50.50 AIDS, Gender and Human Rights https://www.opendemocracy.net/taxonomy/term/7873/all cached version 04/07/2018 11:22:54 en Older women living with HIV in the UK: discrimination and broken confidentiality https://www.opendemocracy.net/5050/jacqui-stevenson/older-women-living-with-hiv-facing-discrimination-and-broken-confidentiality-i <div class="field field-summary"> <div class="field-items"> <div class="field-item odd"> <p>Women accessing HIV care services in the UK report being told to use separate cutlery, being refused help to shower, and having visitors being told by care workers not to associate with them. </p> </div> </div> </div> <p><span class='wysiwyg_imageupload image imgupl_floating_none 0'><a href="//cdn.opendemocracy.net/files/imagecache/wysiwyg_imageupload_lightbox_preset/wysiwyg_imageupload/501857/WomenlivingwithHIVUKNov2016(1).jpg" rel="lightbox[wysiwyg_imageupload_inline]" title=""><img src="//cdn.opendemocracy.net/files/imagecache/article_xlarge/wysiwyg_imageupload/501857/WomenlivingwithHIVUKNov2016(1).jpg" alt="" title="" width="460" height="282" class="imagecache wysiwyg_imageupload 0 imagecache imagecache-article_xlarge" style="" /></a> <span class='image_meta'><span class='image_title'>Women living with HIV in the UK. Image: The Salamander Trust </span></span></span></p><p><em>“We're worried about care homes for people with our disability. In other words they will mistreat you.” </em>Workshop participant</p> <p>As life expectancy grows, more of us can anticipate needing some kind of care in our older age. Worry over such potential future care is not uncommon. This can be fears generated by <a href="http://www.bbc.co.uk/news/uk-27266963">terrible stories in the media</a> about poor treatment in residential care homes. Or worry over burdening family and friends. Concern over the costs of care and how they might be met loom large. Some though face additional cause for concern, particularly those living with stigmatised conditions such as HIV. In recent years, increasing evidence has emerged both of discriminatory treatment of people living with HIV in residential or domiciliary care, and of the fears that many people living with HIV have over facing this in their future. </p> <p>As huge advances have been made in HIV treatment and care, people living with HIV can now expect a <a href="http://www.nhs.uk/chq/Pages/3106.aspx?CategoryID=118&amp;SubCategoryID=126">normal life expectancy</a>. Due to this, the population of older people living with HIV is growing, with <a href="https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/574667/HIV_in_the_UK_2016.pdf">one in three people</a> accessing HIV care services in 2015 aged over 50, <a href="http://www.tht.org.uk/~/media/Files/Publications/Policy/uncharted_territory_final_low-res.pdf">29.960 people</a> in total. This is also driven by increasing rates of diagnosis of HIV amongst older people: in 2015, <a href="https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/574667/HIV_in_the_UK_2016.pdf">17% of new diagnoses</a> were amongst people aged over 50.</p> <p><a href="http://www.tht.org.uk/~/media/Files/Publications/Policy/Uncharted_territory_summary_Final_low-res.pdf">Recent research by the HIV charity THT</a>, with people living with HIV over the age of 50, found that 82% of respondents were concerned about being able to access adequate social care as they grew older, and 88% had not made financial plans to meet their care needs. This lack of financial preparation was rooted in high rates of poverty experienced by older people with HIV, with 58% of the THT survey respondents living on or below the poverty line. In addition, people taking part in the survey reported poor experiences with social care where they were already accessing it, including having their HIV status revealed to friends and family without their consent.</p> <p>The National AIDS Trust published <a href="http://www.nat.org.uk/sites/default/files/publications/NAT_Res_Dom_Care_Report_July_2015.pdf">guidance on HIV for care providers</a> in 2015, to address knowledge gaps and potential stigma and discrimination amongst care workers and in care settings. The guidance includes experiences shared by people living with HIV and specialist social workers, describing discrimination and broken confidentiality, including people being refused help to shower, being made to use separate cutlery, or having visitors or other residents informed of their HIV status and advised not to visit or associate with them. These experiences reflect those reported in the THT research, and in other studies.</p> <p>Many people living with HIV will be familiar with such experiences, and know or know of people who have faced stigma and discrimination in care settings. In <a href="https://drive.google.com/file/d/0B_5XkUwJTVGwQUh2WDdJdkxzWTA/view">my own research</a>, exploring the experiences of ageing with HIV for women in London, with a focus on health and social care needs, such concerns have been shared repeatedly by older women living with HIV.</p> <p>Women make up <a href="https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/574667/HIV_in_the_UK_2016.pdf">almost a third</a> of people living with HIV in the UK, yet are <a href="http://www.huffingtonpost.co.uk/jacquistevenson/minority-within-a-minorit_b_15184762.html">often missing from research and under-represented in policy</a>. In terms of ageing, women face specific gendered experiences and challenges, including biological issues like menopause and loss of bone density and social experiences such as providing care for others. Women also have significant concerns around care and care homes, which are sometimes underrepresented in discussions about care challenges for older people with HIV. In my study, women have reported a range of worries, in addition to concerns about discrimination, including the fear of navigating a care system without children or other family members to act as advocates, and about losing the ability to maintain confidentiality and control disclosure of their HIV status to those close to them. The following are quotes from older women living with HIV taking part in either workshops or a participatory literature review as part of my research, and illustrate the range of concerns that women have.</p> <p>For older women living with HIV who do not have children, or have children that live elsewhere, the prospect of entering care without family to advocate for their needs and ensure they receive good treatment is a source of real worry. In many cases, this is compounded for women who have experiences in navigating the care system on behalf of others, with women I spoke to who have parents in care describing how they felt they played a significant role in ensuring their parent(s) was safe and well-cared for, and feared having no-one to play that role for them:</p> <p><em>“…if that plays out as dementia I feel very fearful of how that scenario is going to be without a family to sort of advocate on my behalf.”</em></p> <p><em>&nbsp;“I would be concerned because I've been directly you know looking after my parents and facilitating their care in both a nursing home last year and now a residential care home and I can just see the vulnerabilities once you're in the care system, in an institution, it's really difficult to negotiate anything for yourself and you really are at the mercy, you know, if you've got nobody keeping an eye on things, you just have to hope that it goes alright”</em></p> <p>For others, their fears were shaped or increased by the experiences of friends or others in their networks, who had experienced discrimination, from poor care to disclosure of HIV status:</p> <p><em>“… also a concern because some of the carers would gossip about other patients so yeah there was a possibility that they were gossiping about her to other patients.”</em></p> <p><em>“Again I'm going to give an example because I do peer support. There is someone who lives with HIV and she's partially blind and she has been allocated carers. They come to her for her daily needs, personal care. This still happens, they disclosed her status.”</em></p> <p>Some women described fears over losing the ability to manage their own medication and clinic appointments, and becoming dependent on others, which would necessitate others knowing their HIV status, and potentially lead to discriminatory treatment:</p> <p><em>“…I always think of the time when I'll start losing my senses, not being able to do things for myself, that alone kills me. I personally, I would say, if I had to go, I don't want to get to that age where someone will have to give me my medication… I mean because of the stigma.”</em></p> <p>Overall, when women described their future care needs and how they might be met, they described fear and worry, over the treatment and standard of care they could expect to receive:</p> <p><em>&nbsp;“… you know my, my most fear is getting old and being put up in a home where people are so ignorant and they're going to treat me, and they can show my files to each other, and gossiping about me. I have nightmares, I have nightmares about this....”</em></p> <p>To alleviate this anxiety, it is essential that training in HIV is implemented as a requirement for all care providers, and that care homes and other facilities are supported to ensure they provide a safe and non-discriminatory setting for people living with HIV. A number of women in my study also suggested the need for care system navigators and advocates for people living with HIV, who could speak up on their behalf and had the training and knowledge to support people living with HIV to access high quality care and to solve challenges where they emerge. Beyond this, HIV stigma is a social issue that needs to be addressed across society. HIV specific support services must also be protected and supported, yet just this past week, it was revealed by a Freedom of Information request by the <a href="http://www.nat.org.uk/press-release/exposed-huge-national-cuts-hiv-support-services">National AIDS Trust</a> that such services have received a 28% funding cut between 2015/16 and 2016/17. This must be reversed to ensure that to ensure that people living and ageing with HIV have access to the specialist support and care that they need. The population of older people living with HIV will continue to grow, and urgent action, resources and attention is needed to ensure they are able to access quality, non-discriminatory and comprehensive care and support.</p> <p><strong><em>Read more articles on openDemocracy 50.50's platform:</em> <a href="https://opendemocracy.net/5050/5050-aids-gender-and-human-rights">AIDS Gender and Human Rights </a></strong></p> <p>&nbsp;</p><fieldset class="fieldgroup group-sideboxs"><legend>Sideboxes</legend><div class="field field-related-stories"> <div class="field-label">Related stories:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> <a href="/5050/alice-welbourn-luisa-orza/welcome-to-our-house-women-living-with-hiv">Welcome to our house: women living with HIV</a> </div> <div class="field-item even"> <a href="/5050/silvia-petretti/hiv-both-cause-and-consequence-of-violence-against-women">HIV: both the cause and the consequence of violence against women</a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/hivaids-and-holistic-healthcare-can-spirituality-and-science-meet">HIV, AIDS and holistic healthcare: can spirituality and science meet?</a> </div> <div class="field-item even"> <a href="/5050/silvia-petretti/i-am-one-of-those-foreigners-living-with-hiv-in-uk">&quot;I am one of those foreigners&quot;: living with HIV in the UK</a> </div> <div class="field-item odd"> <a href="/5050/marama-pala/nobody-left-behind-lives-of-indigenous-women-with-hiv">Nobody Left Behind? The lives of indigenous women with HIV</a> </div> <div class="field-item even"> <a href="/susana-t-fried/ending-hiv">Ending HIV: UN slogans vs the voices of civil society </a> </div> <div class="field-item odd"> <a href="/5050/glory-mlaki/tanzanian-pastoralist-women-hiv-and-health-rights">Tanzanian pastoralist women: HIV and health rights </a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/hiv-witnessing-realisation-of-raw-human-rights">HIV: witnessing the realisation of raw human rights</a> </div> <div class="field-item odd"> <a href="/5050/bev-wilson/women-living-with-hiv-matter-of-safety-and-respect">Women living with HIV: a matter of safety and respect </a> </div> <div class="field-item even"> <a href="/5050/ida-susser/microbicide-success-feminism-is-essential-to-good-science">A microbicide success: feminism is essential to good science</a> </div> <div class="field-item odd"> <a href="/alice-welbourn/hiv-and-aids-language-and-blame-game">HIV and AIDS: language and the blame game</a> </div> <div class="field-item even"> <a href="/5050/susana-t-fried-alice-welbourn/confinement-of-eve-resolving-ebola-zika-and-hiv-with-women-s-bodi">The confinement of Eve: resolving Ebola, Zika and HIV with women’s bodies?</a> </div> <div class="field-item odd"> <a href="/5050/cecilia-chung/hiv-call-for-solidarity-with-transgender-community">HIV: a call for solidarity with the transgender community </a> </div> <div class="field-item even"> <a href="/5050/andrea-von-lieven/hiv-nothing-about-us-without-us">HIV: nothing about us, without us</a> </div> <div class="field-item odd"> <a href="/5050/maria-de-bruyn/hiv-what-kind-of-evidence-counts">HIV: what kind of evidence counts ?</a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/hiv-of-bombs-and-banks-and-transformation">HIV: of bombs and banks and transformation...</a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/hiv-violations-or-investments-in-women%E2%80%99s-rights"> HIV: Violations or investments in women’s rights? </a> </div> <div class="field-item even"> <a href="/blog/jessica_reed/hiv_and_women_fighting_hypocrisy">HIV and women: fighting hypocrisy</a> </div> <div class="field-item odd"> <a href="/5050/martha-tholanah/hiv-disclosure-changing-ourselves-changing-others">HIV disclosure: changing ourselves, changing others </a> </div> <div class="field-item even"> <a href="/5050/susana-t-fried/crosstalk-linking-across-areas-of-criminalization">Crosstalk: HIV and linking across areas of criminalisation</a> </div> </div> </div> </fieldset> <div class="field field-country"> <div class="field-label"> Country or region:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> UK </div> </div> </div> <div class="field field-rights"> <div class="field-label">Rights:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> CC by NC 4.0 </div> </div> </div> 50.50 50.50 UK 50.50 Women Human Rights Defenders 50.50 AIDS, Gender and Human Rights gendered poverty gender justice bodily autonomy 50.50 newsletter Jacqui Stevenson Wed, 05 Apr 2017 08:03:27 +0000 Jacqui Stevenson 109817 at https://www.opendemocracy.net Rhetoric meets reality: ending HIV and AIDS https://www.opendemocracy.net/5050/jane-shepherd/rhetoric-meets-reality-debating-hiv-and-aids <div class="field field-summary"> <div class="field-items"> <div class="field-item odd"> <p>Ending AIDS by 2030 is redundant rhetoric. It is meaningless without investment in community participation. Code red for action.</p> </div> </div> </div> <p><span class='wysiwyg_imageupload image imgupl_floating_none 0'><a href="//cdn.opendemocracy.net/files/imagecache/wysiwyg_imageupload_lightbox_preset/wysiwyg_imageupload/501857/JS_healthworkersAIDS2016.JPG" rel="lightbox[wysiwyg_imageupload_inline]" title=""><img src="//cdn.opendemocracy.net/files/imagecache/article_xlarge/wysiwyg_imageupload/501857/JS_healthworkersAIDS2016.JPG" alt="" title="" width="460" height="246" class="imagecache wysiwyg_imageupload 0 imagecache imagecache-article_xlarge" style="" /></a> <span class='image_meta'><span class='image_title'>“RIP the HIV response”. Protest by South African community health workers for worker’s rights. Photo: Jane Shepherd</span></span></span></p><p>Sixteen years have passed since the International AIDS conference was held at Durban – that watershed moment when an eleven year old activist, Nkosi <a href="http://nkosishaven.org/nkosi-johnsons-history/">Johnson</a>, stood in the main auditorium and asked for acceptance for people living with HIV. It was a time when the South African government’s AIDS <a href="http://www.thebody.com/content/77935/south-africas-remarkable-journey-out-of-the-dark-d.html">denialism</a> prevented the country from accessing antiretrovirals (ARVs). I was living in Zimbabwe where there was also no national roll out of ARV treatment – the state newspaper encouraged eating garlic and beetroot. My ex-boyfriends died, my friends died, my students’ families died. The cemeteries marched across hills, dotted with plastic flowers.</p> <p>Now 17 million of us are on antiretroviral <a href="http://www.unaids.org/en/file/106758">treatment</a> (ART), but this year’s conference was not congratulatory. HIV (and TB) infections continue to <a href="http://www.unaids.org/en/resources/presscentre/pressreleaseandstatementarchive/2016/july/20160712_prevention-gap">rise</a>, there are huge barriers to treatment access with 20 million people without treatment, and there is a glaring <a href="http://www.unaids.org/en/resources/presscentre/featurestories/2016/july/20160719_funding">funding</a> gap. The rhetoric of ending AIDS by 2030 and the 90 90 90 targets for 2020 is meaningless without investment in community participation. Addressing <a href="https://www.opendemocracy.net/5050/susana-t-fried/crosstalk-linking-across-areas-of-criminalization">criminalization</a> and the human rights of key populations are pre-requisites for ending AIDS. Ben Plumley (CEO of <a href="http://pangaeaglobal.org/">Pangaea</a>) summed it up: “UN's revised downwards investment estimates didn't come close to recognising the enormity of the long term prevention, testing, stigma, treatment and research needs we urgently face. In fact the complacency they engender, threaten the progress we have made to date.” </p><p><span class='wysiwyg_imageupload image imgupl_floating_none 0'><a href="//cdn.opendemocracy.net/files/imagecache/wysiwyg_imageupload_lightbox_preset/wysiwyg_imageupload/501857/JS_MarchAIDS2016.jpg" rel="lightbox[wysiwyg_imageupload_inline]" title=""><img src="//cdn.opendemocracy.net/files/imagecache/article_xlarge/wysiwyg_imageupload/501857/JS_MarchAIDS2016.jpg" alt="" title="" width="460" height="310" class="imagecache wysiwyg_imageupload 0 imagecache imagecache-article_xlarge" style="" /></a> <span class='image_meta'><span class='image_title'>Over 6,000 took to the streets of Durban to call for treatment access for all. Photo: Jane Shepherd</span></span></span></p> <p>This was the backdrop to the <a href="http://www.aids2016.org/">AIDS 2016 Conference</a> in Durban; activism was visible, audible and angry. The International Community of Women Living with <a href="http://www.icwea.org/2016/06/join-the-march-to-end-forced-and-coerced-sterilization-of-women-living-with-hiv/">HIV</a> East Africa (ICWEA) against forced sterilisation, community health workers for workers’ rights, key populations for human rights, the Treatment Action Campaign (<a href="http://tac.org.za/campaigns/aids-response-code-red">TAC</a>), and what felt like the whole of KwaZulu Natal, marching for treatment access – loud, passionate, full of song and dance. The Networking Zones for women, human rights, men who have sex with men (MSM), sex workers and transgender people were vibrant and full of activism. The key populations and HIV criminalisation pre-conferences were powerful. The exception was the largely absent voices from people who use drugs, both in the Global Village and on the conference agenda. </p> <p>There were also question marks hanging over the HIV movement. Have targeted interventions and funding silos fragmented our movement? If we don’t unite under commonalities we may not survive as viable networks. If we don't connect with wider issues we may end up irrelevant and isolated. If we don’t define a collective and fully inclusive agenda we will quickly find ourselves in crisis (if we are not already). </p> <p>There were powerful calls for action from women living with HIV to address gender equality and ensure programmes and packages of care, treatment and prevention are gender-responsive. Current biomedical approaches are failing women. One size does not fit all. The launch of a global brief on treatment access <a href="http://salamandertrust.net/project/global-treatment-access-review-women-living-hiv/">barriers</a> for women living with HIV, highlighted the need for a woman-centered, right-based approach to holistic health. </p> <p>Evidence from the Centre for the AIDS Programme of Research in South Africa (CAPRISA) shed light on why HIV prevalence in adolescent girls and young women in sub-Saharan Africa is so <a href="http://www.caprisa.org/News/Read/30166">high</a>. Phylogenetics (using the small differences in HIV’s genes) show who is passing HIV to who at community level. Age-disparate sex &nbsp;– through sugar daddies or “Blessers” – is a key contributor. Vaginal bacteria also plays a role: helpful vaginal flora can reduce susceptibility to acquiring HIV and aid the uptake of a topical pre-exposure <a href="https://www.mailman.columbia.edu/public-health-now/news/new-evidence-why-young-women-south-africa-are-high-risk-hiv-infection">prophylaxis</a> (PrEP). </p><p><span class='wysiwyg_imageupload image imgupl_floating_none 0'><a href="//cdn.opendemocracy.net/files/imagecache/wysiwyg_imageupload_lightbox_preset/wysiwyg_imageupload/501857/JS_WomandlaAIDS2016.jpg" rel="lightbox[wysiwyg_imageupload_inline]" title=""><img src="//cdn.opendemocracy.net/files/imagecache/article_xlarge/wysiwyg_imageupload/501857/JS_WomandlaAIDS2016.jpg" alt="" title="" width="460" height="316" class="imagecache wysiwyg_imageupload 0 imagecache imagecache-article_xlarge" style="" /></a> <span class='image_meta'><span class='image_title'>“Can PrEP be packaged to look a little more sexy?” Poster for Womandla! film screening and debate. Photo: Jane Shepherd</span></span></span></p> <p>HIV prevention technologies for women were big on the agenda. Further analysis from vaginal ring studies were released. The dapivirine ring offered between 75% and 92% HIV risk reduction for women who used the ring consistently – adding a promising option to a much needed prevention package for <a href="http://www.natap.org/2016/IAC/IAC_03.htm">women</a>. </p> <p>It turns out vaginas are also attached to women’s bodies. The US President's Emergency Plan for AIDS Relief (PEPFAR) led partnership launched the $210 million DREAMS Initiative to much fanfare. <a href="http://www.pepfar.gov/partnerships/ppp/dreams/index.htm">DREAMS</a> is a multi-option package to address the structural drivers that increase girls and young women’s HIV risk, such as poverty, gender inequality, sexual violence and a lack of education.&nbsp;</p> <p>Treatment literacy was cited as integral to prevention of vertical transmission, retention in treatment and care, and to adherence. Results from test and treat programmes (where people once diagnosed are encouraged to start treatment for life immediately) were <a href="http://www.aidsmap.com/Test-and-treat-large-study-fails-to-show-an-impact-on-new-HIV-infections/page/3074004/">unsuccessful</a>. Large trials failed to offer the level of community support needed to get people into care and treatment after testing HIV positive – especially difficult when people feel well. </p> <p>A new community treatment literacy <a href="http://www.icwglobal.org/resources/document-library/new-pmtct-treatment-literacy-guide-taking-action-for-women-s-health">guide</a> for prevention of vertical transmission (published by IATT, GNP+, ICW and designed by me) was introduced through an interactive community workshop. Dr Nigel Rollins of the <a href="https://blog.aids.gov/2016/07/hiv-therapy-for-breastfeeding-mothers-can-virtually-eliminate-transmission-to-babies.html">WHO</a> joined the panel to reassure that “WHO recommends, with confidence, breastfeeding if the mother is virally suppressed, on ART and retained in care”. Hopefully, the guide will help clarify the confusion previous guidelines have created. I was reminded that design needs to work on many platforms – think digital, participants also want the guide as a smart phone app. </p><p><span class='wysiwyg_imageupload image imgupl_floating_none 0'><a href="//cdn.opendemocracy.net/files/imagecache/wysiwyg_imageupload_lightbox_preset/wysiwyg_imageupload/501857/JS_whatworksAIDS2016_0.JPG" rel="lightbox[wysiwyg_imageupload_inline]" title=""><img src="//cdn.opendemocracy.net/files/imagecache/article_xlarge/wysiwyg_imageupload/501857/JS_whatworksAIDS2016_0.JPG" alt="" title="" width="460" height="387" class="imagecache wysiwyg_imageupload 0 imagecache imagecache-article_xlarge" style="" /></a> <span class='image_meta'><span class='image_title'>Ideas from participants in the treatment literacy workshop. Image: Georgina Caswell</span></span></span></p> <p>Voluntary medical male circumcision (VMMC) is a cost-effective HIV prevention tool and the ambitious African VMMC programmes have proved successful (in some countries) and will continue to scale-up. Overheard in the coffee queue, “My partner is very happy with my circumcision as I can last longer”. But, engaging boys and men in the HIV response is mostly a neglected area. <a href="https://www.youtube.com/watch?v=T2gEbUcFle4">Vuyiseka Dubula</a> (human rights activist) reminded us that, as women, we fear patriarchal forces taking over if we open up our work to include men, but patriarchy is also excluding men and we need to expose and address these intersectionalities.</p> <p>Stigma was low on the conference agenda but high in community concerns. It is a universal barrier to testing, treatment and full sexual and reproductive health and rights. The session ‘Revolution Against Stigma! What Works to End HIV-related Stigma NOW!’ was so full I could not get in. But, down the corridor in a much larger room, a scientific workshop on PrEP was virtually empty.</p> <p>It was a conference for young people; Africa is a place of young people. Young leaders, many from the <a href="http://www.aidsalliance.org/our-impact/link-up">Link Up project</a>, engaged on all platforms, were articulate and bold. Mark Heywood (<a href="http://section27.org.za/">Section27</a>) pointed out that today’s young leaders have to occupy a crowded space – AIDS activists in the 90s were the first generation. As older activists, our role now is to walk alongside young leaders, not to disappear and leave them to it. </p> <p>What will I take away as key messages? The conference covered much more than the above and these are only my personal highlights. Mentor young leaders, offer community-based treatment literacy and support for adherence and retention in care, roll-out stigma reduction programmes, ensure approaches to prevention, treatment and care are holistic and rights-based, unite as one movement of people living with HIV, use design and digital platforms to mobilise and communicate, sex is fun, activism is essential (the last two could be interchangeable). </p> <p>&nbsp;<em>Read more articles on our platform</em>: <a href="https://opendemocracy.net/5050/5050-aids-gender-and-human-rights">AIDS, Gender and Human Rights</a> </p><fieldset class="fieldgroup group-sideboxs"><legend>Sideboxes</legend><div class="field field-related-stories"> <div class="field-label">Related stories:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> <a href="/5050/alice-welbourn/lost-to-temper-and-hungry-for-hope-diary-of-aids-activist">The diary of an AIDS activist: lost to temper and hungry for hope</a> </div> <div class="field-item even"> <a href="/ending-HIV-ideology-vs-evidence-at-UN">Ending HIV: ideology vs evidence at the UN</a> </div> <div class="field-item odd"> <a href="/susana-t-fried/ending-hiv">Ending HIV: UN slogans vs the voices of civil society </a> </div> <div class="field-item even"> <a href="/5050/susana-t-fried/crosstalk-linking-across-areas-of-criminalization">Crosstalk: HIV and linking across areas of criminalisation</a> </div> <div class="field-item odd"> <a href="/openindia/mona-mishra/hiv-community-condemns-witch-hunt-against-civil-society-in-india">HIV community condemns witch-hunt against civil society in India</a> </div> <div class="field-item even"> <a href="/5050/glory-mlaki/tanzanian-pastoralist-women-hiv-and-health-rights">Tanzanian pastoralist women: HIV and health rights </a> </div> <div class="field-item odd"> <a href="/5050/marama-pala/nobody-left-behind-lives-of-indigenous-women-with-hiv">Nobody Left Behind? The lives of indigenous women with HIV</a> </div> <div class="field-item even"> <a href="/5050/hajjarah-nagadya/aids-targets-fear-factor">AIDS targets: the fear factor </a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn-luisa-orza/welcome-to-our-house-women-living-with-hiv">Welcome to our house: women living with HIV</a> </div> </div> </div> </fieldset> <div class="field field-topics"> <div class="field-label">Topics:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> Civil society </div> </div> </div> <div class="field field-rights"> <div class="field-label">Rights:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> CC by NC 4.0 </div> </div> </div> 50.50 50.50 Civil society 50.50 Women's Movement Building 50.50 AIDS, Gender and Human Rights 50.50 Editor's Pick women's human rights women's health gender justice gender feminism 50.50 newsletter Jane Shepherd Mon, 08 Aug 2016 07:27:33 +0000 Jane Shepherd 104527 at https://www.opendemocracy.net HIV community condemns witch-hunt against civil society in India https://www.opendemocracy.net/openindia/mona-mishra/hiv-community-condemns-witch-hunt-against-civil-society-in-india <div class="field field-summary"> <div class="field-items"> <div class="field-item odd"> <p>It is imperative that Governments, while committing to ending AIDS by 2030, remain alive to the indispensable role of civil society organisations in creating sustainable change.</p> </div> </div> </div> <p><span class='wysiwyg_imageupload image imgupl_floating_none caption-xlarge'><a href="//cdn.opendemocracy.net/files/imagecache/wysiwyg_imageupload_lightbox_preset/wysiwyg_imageupload/500209/Anand-Grovener.jpg" rel="lightbox[wysiwyg_imageupload_inline]" title=""><img src="//cdn.opendemocracy.net/files/imagecache/article_xlarge/wysiwyg_imageupload/500209/Anand-Grovener.jpg" alt="" title="" class="imagecache wysiwyg_imageupload caption-xlarge imagecache imagecache-article_xlarge" style="" width="460" /></a> <span class='image_meta'><span class='image_title'>Anand Grover, forme UN Rapporteur on Health. Some rights rserved.</span></span></span>As the Government of India, along with other member states made promises at the UN General Assembly Special Session on AIDS underway in New York, it intensified its persecution of civil society organisations in India. Recent instances brings the persecution to the doorstep of the HIV response in India.</p> <p>In early June, Lawyers Collective, a civil society organisation that has been at the forefront of legal activism to ensure the rights of people living with HIV, LGBTI groups,&nbsp;sexworkers&nbsp;and injecting drug users in India, received a government order suspending its right to receive funds from foreign agencies. This had the potential to hamper all of Lawyers Collectives work with HIV organisations and the central and state governments in India.</p> <p>Among other things, the organisation was accused of utilising foreign funds for raising awareness and conducting workshops/meetings/seminars on issues relating to HIV/AIDS and women’s empowerment. Further, they have been accused of spending foreign funds on advocacy with media and Members of Parliament for raising awareness on legal issues, including discrimination faced by people living with HIV and the need for legislative measures for redress. And also, they have been accused of spending foreign funds on organising protest rallies led by positive people’s networks.</p> <p>This incident came as an enormous shock to the HIV community that has been witness to the work of Lawyer’s Collective since the mid-1990’s.&nbsp; In the early days of the HIV epidemic in India, when very few people knew anything at all&nbsp;about&nbsp;the issues surrounding HIV and the rights of people living with HIV, Lawyers Collective challenged&nbsp;discrimination against people living with HIV in the Bombay High Court in 1997. Two landmark legislations were drafted&nbsp;by them - Protection of Women from Domestic Violence Act, 2005 and&nbsp;the HIV/AIDS Bill, 2014, which is waiting&nbsp;for ratification by the parliament. </p> <p>Lawyers Collective led the battle against legislation that criminalises same-sex relations. They secured affordable medicines by preserving public health safeguards under the patent laws&nbsp;and have recently&nbsp;drafted&nbsp;changes to ensure access to essential narcotic drugs.&nbsp;Anand Grover, senior advocate and a founder of Lawyers Collective, held the mandate of the UN Special Rapporteur on Right to Health between 2008 to 2014. These and other initiatives helped restore the faith of marginalised groups&nbsp;in the Indian Judiciary and the Constitution of India.</p> <p>While the entire HIV community in&nbsp;India,&nbsp;and many from the around the world stand by Lawyers Collective in this moment of strife and persecution, the situation begs several larger questions. &nbsp;What is the future of rights-based civil society mobilisation in India? What safeguards&nbsp;are available for activists? In the absence of national funding for advocacy, and the shrinking trickle of international funding, how are civil society initiatives to sustain their work? Are the hard-won freedoms of civil society activists in India at risk of being completely closed down?</p> <p>The HIV community is particularly concerned about the shrinking space for civil society voices in India in view of the fact that the enormous success of the HIV programme in India has been due, to a large extent, to the mobilisation of communities around issues of rights and justice. Nearly 170 organisations and individuals from across India and various parts of the world have come together to sign a petition condemning the recent persecution of Lawyers Collective.</p> <p>It is imperative that Governments, while committing to ending AIDS by 2030, remain alive to the indispensable role of civil society organisations in creating sustainable change.</p><fieldset class="fieldgroup group-sideboxs"><legend>Sideboxes</legend><div class="field field-related-stories"> <div class="field-label">Related stories:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> <a href="/ending-HIV-ideology-vs-evidence-at-UN">Ending HIV: ideology vs evidence at the UN</a> </div> <div class="field-item even"> <a href="/susana-t-fried/ending-hiv">Ending HIV: UN slogans vs the voices of civil society </a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/hivaids-and-holistic-healthcare-can-spirituality-and-science-meet">HIV, AIDS and holistic healthcare: can spirituality and science meet?</a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/lost-to-temper-and-hungry-for-hope-diary-of-aids-activist">The diary of an AIDS activist: lost to temper and hungry for hope</a> </div> <div class="field-item odd"> <a href="/5050/susana-t-fried/crosstalk-linking-across-areas-of-criminalization">Crosstalk: HIV and linking across areas of criminalisation</a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/aids-and-adolescents-denying-access-to-health">AIDS and adolescents: denying access to health </a> </div> <div class="field-item odd"> <a href="/5050/hajjarah-nagadya/aids-targets-fear-factor">AIDS targets: the fear factor </a> </div> <div class="field-item even"> <a href="/5050/susan-paxton/aids-2014-where-are-women-we-need-to-step-up-pace">AIDS 2014: Where are the women we need to step up the pace? </a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn-luisa-orza/welcome-to-our-house-women-living-with-hiv">Welcome to our house: women living with HIV</a> </div> </div> </div> </fieldset> <div class="field field-country"> <div class="field-label"> Country or region:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> India </div> </div> </div> <div class="field field-topics"> <div class="field-label">Topics:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> Civil society </div> <div class="field-item even"> Democracy and government </div> <div class="field-item odd"> International politics </div> </div> </div> <div class="field field-rights"> <div class="field-label">Rights:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> CC by NC 4.0 </div> </div> </div> openIndia 50.50 openIndia India Civil society Democracy and government International politics 50.50 AIDS, Gender and Human Rights Mona Mishra Sun, 07 Aug 2016 08:07:46 +0000 Mona Mishra 104602 at https://www.opendemocracy.net The diary of an AIDS activist: lost to temper and hungry for hope https://www.opendemocracy.net/5050/alice-welbourn/lost-to-temper-and-hungry-for-hope-diary-of-aids-activist <div class="field field-summary"> <div class="field-items"> <div class="field-item odd"> <p>“The real reason we haven’t beaten this epidemic boils down to one simple fact: we value some lives more than others” &nbsp;-&nbsp; Charlize Theron, speaking at the 21st International AIDS Conference in Durban.</p> </div> </div> </div> <p><span class='wysiwyg_imageupload image imgupl_floating_none 0'><a href="//cdn.opendemocracy.net/files/imagecache/wysiwyg_imageupload_lightbox_preset/wysiwyg_imageupload/501857/condomising in the Global Village.jpeg" rel="lightbox[wysiwyg_imageupload_inline]" title=""><img src="//cdn.opendemocracy.net/files/imagecache/article_xlarge/wysiwyg_imageupload/501857/condomising in the Global Village.jpeg" alt="" title="" width="460" height="345" class="imagecache wysiwyg_imageupload 0 imagecache imagecache-article_xlarge" style="" /></a> <span class='image_meta'><span class='image_title'>"Condomising" in the Global Village, International AIDS Conference, Durban: Photo: Alice Welbourn</span></span></span></p><p>On the final day of this year’s International AIDS <a href="http://www.aids2016.org/">Conference</a> in Durban I got mad in public. It was in yet another panel about women with no woman actually living openly with this HIV virus on the platform. I normally take pride in having a small reputation for keeping my relative calm when all around me are losing theirs. But my outburst from the audience last Friday, especially when the panelists talked about women’s leadership, the need to link with the women’s movement and the idea of addressing huge rates of HIV among young women in sub-Saharan Africa with <a href="https://start.truvada.com/?_ga=1.240818954.825770805.1469780452">PrEP</a>, was about the absence of a woman living openly with HIV on the panel, the mad lack of funds for women’s rights activists to take part at all and the huge need to hold on to bodily integrity when it comes to treatment, This outburst offered me a large and overdue dent in this particular aspect of my ego. It is really hard, I find, being an activist and not getting angry. Anger seems to be part of an activist’s job description. <a href="https://www.youtube.com/watch?v=G0T_2NNoC68">Anger</a> comes from the reptile part of our brains, the most ancient, instinctive part in the lower back of our skulls, which we share with the rest of the animal kingdom. It is borne out of deep fear, frustration and despair. Yet it does not represent us humans at our best and erupts most often at the wrong time with the wrong person. &nbsp;So I have had to keep learning, the hard way, that anger doesn’t get you very far, Most of the time, I manage to keep it quietly under wraps, ticking away dormant, well covered up by the more humane folds of my upper brain. But every now and then it lashes out in a charged moment of fierce <a href="http://skoll.org/2016/05/09/conscious-social-change-investing-in-mindfulness-for-fierce-compassion-and-social-impact/">compassion</a>. Last Friday was one of those moments. This article is both an apology to those who, through no ill-intent of their own, got caught in the firing line of my lashing reptile tongue, and a rage against the machine that charges up these furies inside us.&nbsp; </p><p><span class='wysiwyg_imageupload image imgupl_floating_none 0'><a href="//cdn.opendemocracy.net/files/imagecache/wysiwyg_imageupload_lightbox_preset/wysiwyg_imageupload/501857/the carpark meeting room under the main conference building.jpeg" rel="lightbox[wysiwyg_imageupload_inline]" title=""><img src="//cdn.opendemocracy.net/files/imagecache/article_xlarge/wysiwyg_imageupload/501857/the carpark meeting room under the main conference building.jpeg" alt="" title="" width="460" height="345" class="imagecache wysiwyg_imageupload 0 imagecache imagecache-article_xlarge" style="" /></a> <span class='image_meta'><span class='image_title'>The carpark meeting room under the main conference building. Photo Alice Welbourn.</span></span></span></p> <p>The week didn’t start well. I arrived early, for the “Living”, 2-day Pre-Conference which, although it was great to see old friends and colleagues, took place mainly in ‘breakout rooms’ which had been temporarily created out of the underground concrete carpark dungeon beneath the Durban conference centre. With loudly whirring ventilation shafts running across the ceiling above us and cold strips of white neon light to guide us, we truly felt hunkered down with a bunker mentality, as we considered where we had come from and where we are heading next with this pandemic. With new <a href="http://www.unaids.org/en/resources/presscentre/pressreleaseandstatementarchive/2016/july/20160712_prevention-gap">adult</a> HIV acquisition still very worrying globally and with widespread cuts to AIDS <a href="http://www.unaids.org/en/resources/presscentre/featurestories/2016/july/20160719_funding">budgets</a>, the mood was bleak. So this environment sadly set my mood for the week. A feeling of restlessness and anxiety, fuelled by other subsequent events. </p> <p>Funding inequities was a key theme for many over the week. Of course, I was lucky to be there at all. There are many colleagues from around the world who could not remotely find the huge funds to attend. The conference is made up of many different layers of the AIDS industry. There are those from government or big pharma, the UN, for profit companies and big international NGOs, who stay right next door in the Hilton, or other large hotels nearby, and often ask me if I am staying there too. I wasn’t. There are exhausted scholarship holders who sleep 20 km away, shipped in and out on shuttle buses. Some lucky few get these scholarships; others manage to get registration waived by being volunteers or programme rapporteurs, or as media reps, like me. Some young women got shipped halfway around the world to appear at pre-meetings and then had no pass or support to attend the conference proper or even the other pre-conference meetings. There are some, like Martha Tholanah, a widely respected global AIDS activist, former chair of the International Community of Women living with HIV, an <a href="https://www.opendemocracy.net/5050/martha-tholanah/hiv-disclosure-changing-ourselves-changing-others">openDemocracy</a> contributor, Chair of the Gay and Lesbian Society in Zimbabwe, winner of the 2014 David Kato <a href="http://www.zimbabwesituation.com/news/zimsit_w_galz-martha-tholanah-wins-2015-david-kato-vision-and-voice-aaward/">Award</a>, and this time awarded the Elizabeth Taylor Award by the International AIDS Society and AmfAR, during the opening plenary <a href="https://www.veooz.com/news/pLFCyd4.html">session</a>. Yet even Martha, for all her extraordinary contributions to human rights, and even though she was requested by major international agencies to appear on three different panels in the main conference during the week, had to commit firstly to her services as a rapporteur in order to attend the conference at all.&nbsp; This. Must. Change. </p> <p>Bodily <a href="https://s3.amazonaws.com/one_org_international/africa/wp-content/uploads/2016/07/22090217/Picture6.png">autonomy</a>, or lack of it, is another key issue that constantly disturbed me. Bodily autonomy is enshrined in human <a href="https://www.opendemocracy.net/5050/susana-t-fried/crosstalk-linking-across-areas-of-criminalization">rights</a>. The thalidomide <a href="http://helix.northwestern.edu/article/thalidomide-tragedy-lessons-drug-safety-and-regulation">catastrophe</a> of the 1960s warned us of the high stakes involved in putting medication into people’s bodies when it hasn’t been properly tested. Obstetricians have very clear guidelines around <a href="https://www.rcog.org.uk/en/news/rcog-release-challenges-of-developing-obstetric-medicines-discussed-in-scientific-opinion-paper/">medication</a>, as a result of this disaster. They and <a href="https://www.youtube.com/watch?v=lgJnZbhlSVM">others</a> regularly emphasise that all medication should be used as little as possible for as briefly as possible. Meanwhile, WHO has now released its latest treatment <a href="http://www.who.int/hiv/pub/arv/arv-2016/en/">guidelines</a>, called “<a href="http://www.who.int/hiv/topics/treatment/treat-all-movement/en/">treat all</a>” for short, which promotes immediate life-long treatment for all who test positive for HIV. As WHO’s Director of the HIV Department, at the closing of the Living Conference explained, the new guidelines were based on a global <a href="http://apps.who.int/iris/bitstream/10665/189977/1/WHO_HIV_2015.36_eng.pdf?ua=1">consultation</a> of 206 people living with or working on HIV. He did say that both testing and treatment are offered, not mandatory. But this particular piece of information appears on pages 72 and 73 of this <a href="http://apps.who.int/iris/bitstream/10665/208825/1/9789241549684_eng.pdf">document</a> so does not jump out at the reader. Whilst I continue to believe in the critical importance of treatment, when we want and need it, the issues facing people who take cannot be ignored. More on this further down. </p><p><span class='wysiwyg_imageupload image imgupl_floating_none 0'><a href="//cdn.opendemocracy.net/files/imagecache/wysiwyg_imageupload_lightbox_preset/wysiwyg_imageupload/501857/the whatwomenwant twitter campaign banner in the Women&#039;s Networking Zone,.jpeg" rel="lightbox[wysiwyg_imageupload_inline]" title=""><img src="//cdn.opendemocracy.net/files/imagecache/article_xlarge/wysiwyg_imageupload/501857/the whatwomenwant twitter campaign banner in the Women&#039;s Networking Zone,.jpeg" alt="" title="" width="460" height="345" class="imagecache wysiwyg_imageupload 0 imagecache imagecache-article_xlarge" style="" /></a> <span class='image_meta'><span class='image_title'> "Whatwomenwant" twitter campaign banner in the Women's Networking Zone, Global Village: Photo: Alice Welbourn</span></span></span></p> <p>A third theme which struck me was the ongoing paucity of women living with HIV in the main conference sessions. I was involved in presenting three sets of data which have been developed by women living with HIV ourselves, and which clearly indicate that many women living with HIV have major issues with accessing treatment. First, we unveiled new collaborative research <a href="http://salamandertrust.net/wp-content/uploads/2014/05/SalamanderTrustAIDS2016__poster_finalTUPED272.pdf">findings</a> in Durban from our “Welcome to our House” <a href="https://www.opendemocracy.net/5050/alice-welbourn-luisa-orza/welcome-to-our-house-women-living-with-hiv">survey</a>, commissioned by WHO’s Department of Reproductive Health and Research. We reported, on just one of many hundreds of posters in the main conference, the side effects from treatment experienced by women living with HIV, based on a global sample of 434 women. Of the 88% of these who were on treatment, only 11.9% reported no side effects. These included fatigue, mood changes, headaches, changes of body shape, loss of libido or sexual desire and others. These physical challenges are difficult to deal with in and of themselves: they also impact on women’s sexual health, our ability to work and feel financially secure, our autonomy and dignity, and mental health. They can even make women more vulnerable to gender-based <a href="https://www.opendemocracy.net/5050/alice-welbourn-luisa-orza/welcome-to-our-house-women-living-with-hiv">violence</a>. </p><p><span class='wysiwyg_imageupload image imgupl_floating_none 0'><a href="//cdn.opendemocracy.net/files/imagecache/wysiwyg_imageupload_lightbox_preset/wysiwyg_imageupload/501857/Presenting the UNWomen treatment access review in the Women&#039;s Networking Zone, Global Village.jpeg" rel="lightbox[wysiwyg_imageupload_inline]" title=""><img src="//cdn.opendemocracy.net/files/imagecache/article_xlarge/wysiwyg_imageupload/501857/Presenting the UNWomen treatment access review in the Women&#039;s Networking Zone, Global Village.jpeg" alt="" title="" width="460" height="259" class="imagecache wysiwyg_imageupload 0 imagecache imagecache-article_xlarge" style="" /></a> <span class='image_meta'><span class='image_title'>Presenting the UNWomen treatment access review in the Women's Networking Zone, Global Village. Photo: Alice Welbourn</span></span></span></p> <p>Secondly, in the Women’s Networking Zone in the informal Global Village, we presented our collaborative <a href="http://salamandertrust.net/wp-content/uploads/2015/07/UNWomenetal_Web_Treatment_access_4pp2016_Final.pdf">research</a> with UN Women, ATHENA Network and AVAC on the first ever global treatment access of women living with HIV. This revealed how many barriers women face, even from health workers’ attitudes and practices when trying just to access care. This multi-stage review included discussions with well over 200 <a href="http://salamandertrust.net/wp-content/uploads/2015/07/UNWomenetal_Web_Treatment_access_4pp2016_Final.pdf">women</a>. As Martha Tholanah remarked “am I lost to follow up or bullied out of care?”, after a health worker rebuked Martha when she commented that it can be hard to keep taking medication daily for <a href="http://salamandertrust.net/wp-content/uploads/2015/07/UNWomenetalWNZ2016Participatory_TxAccessReview_Findings_slidesFinal.pptx.pdf">years</a>. </p><p><span class='wysiwyg_imageupload image imgupl_floating_none 0'><a href="//cdn.opendemocracy.net/files/imagecache/wysiwyg_imageupload_lightbox_preset/wysiwyg_imageupload/501857/Makena Henguva of Namibia Women&#039;s Health Network presenting participatory films in the Women&#039;s Networking Zone, Global Village.jpeg" rel="lightbox[wysiwyg_imageupload_inline]" title=""><img src="//cdn.opendemocracy.net/files/imagecache/article_xlarge/wysiwyg_imageupload/501857/Makena Henguva of Namibia Women&#039;s Health Network presenting participatory films in the Women&#039;s Networking Zone, Global Village.jpeg" alt="" title="" width="460" height="345" class="imagecache wysiwyg_imageupload 0 imagecache imagecache-article_xlarge" style="" /></a> <span class='image_meta'><span class='image_title'>Makena Henguva of Namibia Women's Health Network presenting participatory films in the Women's Networking Zone, Global Village (c) Alice Welbourn</span></span></span></p> <p>Our third data set was a series of participatory <a href="http://salamandertrust.net/project/capacity-building-leadership-gender-based-violence-participatory-film-project/">films</a> created by women living with HIV who are members of Mama’s Club in Uganda and the Namibia Women’s Health Network, also presented in the informal Global Village. As one young Ugandan woman described: “I just decided to find a razor blade and cut my own cord” when she gave birth on a maternity ward before the Mama’s Club was started. In the Ugandan <a href="https://vimeo.com/album/3879429">films</a>, the women describe the crazy situation whereby the health service expects each woman to have a treatment “buddy” to accompany her (normally expected to be her husband) when she goes to access treatment, who then has to be tested for HIV himself: but if her husband refuses to go with her, she then has to find a motorcycle ‘boda boda’ taxi driver to accompany her instead, and pretend to be her husband. The Namibia <a href="https://vimeo.com/album/3879592">films</a> reveal the awfulness of coerced sterilization which has happened to so many women living with HIV across sub-Saharan Africa, Asia, the Pacific, Latin America and beyond, as a consequence of their HIV status. All these films are a huge testament to the courage, resilience, activism and sheer grit of the women who have regrouped to form strong grassroots peer-led support networks, which help each woman who turns to them; and these in turn often become trained to help other, more newly diagnosed women. </p> <p>None of these three presentations - and many on similar women’s rights <a href="http://www.athenanetwork.org/assets/files/General%20-%20publications/WWWSocialMediaRoadmaptoAIDS2016.pdf">themes</a> from other colleagues in Durban, made it into the large session rooms where the formal sessions took place. Meanwhile, those sessions in the main conference which did address women and girls were, once again, largely conspicuous by the absence of a woman - or young woman - actually living with HIV on the panel. </p> <p>By contrast in the main conference, the main agenda included a focus on WHO’s “<a href="http://www.who.int/mediacentre/news/releases/2015/hiv-treat-all-recommendation/en/">treat all</a>” <a href="https://www.opendemocracy.net/5050/hajjarah-nagadya/aids-targets-fear-factor">campaign</a>, and on the threat of HIV drug <a href="http://www.who.int/hiv/pub/drugresistance/hiv-drug-resistance-brief-2016/en/">resistance</a>, both of which we have commented on before. Whilst UNAIDS <a href="http://www.unaids.org/en/file/106758">asserts</a> that 17 million people with HIV are now on treatment, there are huge challenges, as our research shows clearly, between starting and staying on <a href="https://www.opendemocracy.net/5050/alice-welbourn-luisa-orza/welcome-to-our-house-women-living-with-hiv">medication</a>. This is what can easily lead to HIV drug resistance. And amongst those I spoke with last week, many question whether this 17 million figure represents people actually staying on treatment, because of the huge personal barriers described above. That is why we see our research as so relevant. </p><p><span class='wysiwyg_imageupload image imgupl_floating_none 0'><a href="//cdn.opendemocracy.net/files/imagecache/wysiwyg_imageupload_lightbox_preset/wysiwyg_imageupload/501857/the solidaritree in the Global Village.jpeg" rel="lightbox[wysiwyg_imageupload_inline]" title=""><img src="//cdn.opendemocracy.net/files/imagecache/article_xlarge/wysiwyg_imageupload/501857/the solidaritree in the Global Village.jpeg" alt="" title="" width="460" height="345" class="imagecache wysiwyg_imageupload 0 imagecache imagecache-article_xlarge" style="" /></a> <span class='image_meta'><span class='image_title'>The “solidaritree” in the Global Village. Photo: Alice Welbourn</span></span></span></p> <p>So once again we have witnessed a big gulf between the rhetoric of much of the main conference and the reality of our own lived experiences. Once again, the latter are represented far better in the informal global village activities, yet barely noticeable in the main conference. Once again, our right to represent and speak out for ourselves on panels and our rights to uphold our bodily integrity in relation to treatment and care are overlooked in the main conference arena. Ironic as it seems, one person who spoke truth to power in the main conference was South African Hollywood star, Charlize <a href="https://www.youtube.com/watch?v=4sJQ7RfQby0">Theron</a>, in the opening ceremony, when she stated: </p> <p>"The real reason we haven’t beaten this epidemic boils down to one simple fact: we value some lives more than others. We value men more than women, straight love more than gay love, white skin more than black skin, the rich more than the poor, and adults more than adolescents…… we single out the vulnerable, the oppressed or the abused." </p> <p>She wasn’t saying anything new that women living with HIV and others in civil society haven’t said before her. But she was listened to for a change. For a few rare moments, the voices and views of all of us activists were actually being articulated in the main conference. I nominate Charlize to organize our next conference. Perhaps then we will start to see the global political shake up that is really needed to respond effectively to this pandemic once and for all. Perhaps then I will be able to hold my temper in check. </p> <p><em>With thanks to Luisa Orza for contributing to this article. </em></p> <p>&nbsp;<em>Read more articles in our dialogue:</em> <strong><a href="https://opendemocracy.net/5050/5050-aids-gender-and-human-rights">AIDS,Gender and Human Rights <br /></a></strong></p><fieldset class="fieldgroup group-sideboxs"><legend>Sideboxes</legend><div class="field field-related-stories"> <div class="field-label">Related stories:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> <a href="/5050/susana-t-fried/crosstalk-linking-across-areas-of-criminalization">Crosstalk: HIV and linking across areas of criminalisation</a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/hivaids-and-holistic-healthcare-can-spirituality-and-science-meet">HIV, AIDS and holistic healthcare: can spirituality and science meet?</a> </div> <div class="field-item odd"> <a href="/5050/andrea-von-lieven/hiv-nothing-about-us-without-us">HIV: nothing about us, without us</a> </div> <div class="field-item even"> <a href="/ending-HIV-ideology-vs-evidence-at-UN">Ending HIV: ideology vs evidence at the UN</a> </div> <div class="field-item odd"> <a href="/susana-t-fried/ending-hiv">Ending HIV: UN slogans vs the voices of civil society </a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn-luisa-orza/welcome-to-our-house-women-living-with-hiv">Welcome to our house: women living with HIV</a> </div> <div class="field-item odd"> <a href="/alice-welbourn/hiv-and-aids-language-and-blame-game">HIV and AIDS: language and the blame game</a> </div> <div class="field-item even"> <a href="/5050/glory-mlaki/tanzanian-pastoralist-women-hiv-and-health-rights">Tanzanian pastoralist women: HIV and health rights </a> </div> <div class="field-item odd"> <a href="/blog/email/sylvia-rowley/2009/03/01/hiv-and-womens-rights-in-uganda-why-a-new-law-would-hurt-women">HIV and women&#039;s rights in Uganda: why a new law would hurt women</a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/aids-and-adolescents-denying-access-to-health">AIDS and adolescents: denying access to health </a> </div> <div class="field-item odd"> <a href="/5050/hajjarah-nagadya/aids-targets-fear-factor">AIDS targets: the fear factor </a> </div> </div> </div> </fieldset> <div class="field field-rights"> <div class="field-label">Rights:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> CC by NC 4.0 </div> </div> </div> 50.50 50.50 50.50 AIDS, Gender and Human Rights women's health gender justice gender feminism bodily autonomy 50.50 newsletter Alice Welbourn Mon, 01 Aug 2016 07:27:33 +0000 Alice Welbourn 104396 at https://www.opendemocracy.net Crosstalk: HIV and linking across areas of criminalisation https://www.opendemocracy.net/5050/susana-t-fried/crosstalk-linking-across-areas-of-criminalization <div class="field field-summary"> <div class="field-items"> <div class="field-item odd"> <p>In a moment of global attacks on civil society, an intersectional approach linking issues across HIV, sexuality, adult consensual sex and bodily integrity is critical.&nbsp; Now, more than ever.</p> </div> </div> </div> <p><span class='wysiwyg_imageupload image imgupl_floating_none 0'><a href="//cdn.opendemocracy.net/files/imagecache/wysiwyg_imageupload_lightbox_preset/wysiwyg_imageupload/501857/AIDS 2016 Speaking Wall.JPG" rel="lightbox[wysiwyg_imageupload_inline]" title=""><img src="//cdn.opendemocracy.net/files/imagecache/article_xlarge/wysiwyg_imageupload/501857/AIDS 2016 Speaking Wall.JPG" alt="" title="" width="460" height="345" class="imagecache wysiwyg_imageupload 0 imagecache imagecache-article_xlarge" style="" /></a> <span class='image_meta'><span class='image_title'>Speaking Wall, World AIDS Conference, Durban 2016. Photo: Alice Welbourn.</span></span></span></p><p>Every international AIDS conference seems to have a theme or two that picks up energy as it goes. For me, at the <a href="http://www.aids2016.org/">World AIDS Conference </a>2016 underway in Durban, this was the growing discussion about disastrous impact of criminal law.&nbsp; Of course, this isn’t a new issue – not at an international AIDS conference, nor in advocacy more generally. The <a href="http://www.undp.org/content/dam/undp/library/HIV-AIDS/Governance%20of%20HIV%20Responses/Commissions%20report%20final-EN.pdf">2012 Global Commission on HIV and the Law</a> explored this in depth. However, at this AIDS conference there was a renewed energy behind it.&nbsp; In addition, there were a number of conversations that added a new twist, linking criminalisation of same sex conduct, sex work and HIV criminalisation to criminalisation of abortion.&nbsp; </p><p>For someone who stands with one leg in the women’s movement and another in the HIV movement, this was a welcome and long overdue conversation. We know the ways in which abusive laws and practices put sex workers, gay and other men who have sex with men, transgender women (there is still a dearth of data on HIV and <a href="https://www.avert.org/learn-share/hiv-fact-sheets/women-who-have-sex-with-women">transmen or lesbians and other women who have sex with women</a>) and other marginalised groups at increased risk of contracting HIV and create serious and unmanageable barriers to accessing services and justice. We also know the ways in which governments use criminal laws not just to contain and regulate the lives of individuals, but they also use it to circumscribe the work of civil society organisations working on these issues.</p> <p>Laws that criminalise adult consensual sex, non-heteronormative behavior and gender transgression are used to control (often in the name of “protection”), penalise and, as a result, stigmatise a range of sexual practices and sexual and gender identities that put health and rights at risk.&nbsp; Many of the groups who are on the receiving end of such punitive laws and practices are among those most at risk of contracting HIV.&nbsp; This conversation, despite massive evidence, still doesn’t always inform legislation and public policy.&nbsp; This is, in a sense, “old hat” to social movements across the board.</p> <p>However, what was new to the conversation at this year’s <a href="http://www.aids2016.org/">International AIDS Conference (AIDS2016)</a> in a visible way and in a public conversation was the introduction of criminalisation of abortion to the list of forms of criminalisation that intersect with HIV risk and vulnerability.&nbsp; <a href="http://www.unaids.org/en/resources/presscentre/featurestories/2016/july/20160719_criminal-law">At one panel</a>, Lucinda O’Hanlon from the UN human rights office drew out some of the parallels between criminalisation of abortion and other forms of criminalisation, stating “Restrictive legal regimes on abortions, including criminalisation, do not reduce abortion rates but rather makes them unsafe. These restrictions are rooted in societal norms that deny women’s agency and capacity to make decisions about their own lives.”&nbsp; In many countries, women who undergo abortions are stigmatised as improper women, much like sex workers who, as Ruth Morgan Thomas noted “Criminalisation of sex work sends the message that sex workers are not seen as fit and worthy to enjoy rights.”</p> <p>However, the linkages can be more direct.&nbsp; For example, transmen who have sex with other men and become pregnant may find it impossible to find safe and non-judgmental sexual and reproductive health care, let alone abortion services.&nbsp; Sex workers, too, may find their access to abortion services restricted because of the ripple effect of laws criminalising sex work. &nbsp;With abortion, as with other groups whose identities and practices are penalised, other factors of marginalisation matter.&nbsp; In the case of abortion, it is <a href="https://www.guttmacher.org/fact-sheet/facts-induced-abortion-worldwide">women with fewer resources</a> who are at greatest risk of facing punishment for their choice.&nbsp; The same could be said for those who get penalised for living with HIV.&nbsp; For example, a young woman who has been coerced into having sex and fears that the man she had sex with might be living with HIV, will find it difficult in many countries, to have an abortion. <a href="http://www.reproductiverights.org/sites/crr.civicactions.net/files/documents/AbortionMap_Factsheet_2013.pdf">In some countries</a>, if she is under the age of consent for services, she will have to get parental consent just to be able to see a sexual and reproductive health practitioner. A limited number of <a href="http://www.reproductiverights.org/sites/crr.civicactions.net/files/documents/AbortionMap_Factsheet_2013.pdf">countries</a> ban abortions under any circumstances, even, in some cases, as a principle of their country’s constitution (Ecuador, for instance).&nbsp; <a href="http://www.reproductiverights.org/sites/crr.civicactions.net/files/documents/AbortionMap_Factsheet_2013.pdf">Most countries</a> allow abortion under some circumstances, but access the services requires money, information and the ability to travel.&nbsp; Such resource requirements have a particularly severe impact on young women, poor women, and women in marginalised groups.&nbsp; Failing to learn lessons from HIV, women, adolescents and girls in countries <a href="https://www.opendemocracy.net/5050/susana-t-fried-alice-welbourn/confinement-of-eve-resolving-ebola-zika-and-hiv-with-women-s-bodi">affected by Zika</a> face similar barriers to services and justice.</p> <p>In a cross-issue conversation, <a href="http://www.unaids.org/en/resources/presscentre/featurestories/2016/july/20160719_criminal-law">Edwin Bernard from the HIV Justice Network</a> also noted a “shift towards intersectionality in our efforts to end the punitive and abusive laws against various populations,” including women who seek or undergo abortions<em>.&nbsp;</em>In this context, these conversations stand as a clarion call for a new or renewed effort to link forces to challenge the growing reliance on punitive laws and practices, including those about abortion, by governments to control those who step outside of social norms around gender and sexuality.&nbsp; </p><p><em>Read more articles on openDemocracy 50.50's platform</em>: <strong><a href="https://opendemocracy.net/5050/5050-aids-gender-and-human-rights">AIDS, Gender and Human Rights</a></strong></p><fieldset class="fieldgroup group-sideboxs"><legend>Sideboxes</legend><div class="field field-related-stories"> <div class="field-label">Related stories:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> <a href="/5050/alice-welbourn/hivaids-and-holistic-healthcare-can-spirituality-and-science-meet">HIV, AIDS and holistic healthcare: can spirituality and science meet?</a> </div> <div class="field-item even"> <a href="/5050/glory-mlaki/tanzanian-pastoralist-women-hiv-and-health-rights">Tanzanian pastoralist women: HIV and health rights </a> </div> <div class="field-item odd"> <a href="/ending-HIV-ideology-vs-evidence-at-UN">Ending HIV: ideology vs evidence at the UN</a> </div> <div class="field-item even"> <a href="/susana-t-fried/ending-hiv">Ending HIV: UN slogans vs the voices of civil society </a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn-luisa-orza/welcome-to-our-house-women-living-with-hiv">Welcome to our house: women living with HIV</a> </div> </div> </div> </fieldset> <div class="field field-rights"> <div class="field-label">Rights:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> CC by NC 4.0 </div> </div> </div> 50.50 50.50 50.50 AIDS, Gender and Human Rights 50.50 Editor's Pick women's health gender justice gender feminism bodily autonomy 50.50 newsletter Susana T. Fried Fri, 22 Jul 2016 07:27:33 +0000 Susana T. Fried 104179 at https://www.opendemocracy.net Tanzanian pastoralist women: HIV and health rights https://www.opendemocracy.net/5050/glory-mlaki/tanzanian-pastoralist-women-hiv-and-health-rights <div class="field field-summary"> <div class="field-items"> <div class="field-item odd"> <p>Vertical health service provision alone will not solve the gender-based violence and HIV challenges facing pastoralist women in Tanzania. More holistic, rights-based policies are required.</p> </div> </div> </div> <p><span class='wysiwyg_imageupload image imgupl_floating_none 0'><a href="//cdn.opendemocracy.net/files/imagecache/wysiwyg_imageupload_lightbox_preset/wysiwyg_imageupload/501857/MaasaiTraditionalBirthAttendants.jpg" rel="lightbox[wysiwyg_imageupload_inline]" title=""><img src="//cdn.opendemocracy.net/files/imagecache/article_xlarge/wysiwyg_imageupload/501857/MaasaiTraditionalBirthAttendants.jpg" alt="" title="" width="460" height="309" class="imagecache wysiwyg_imageupload 0 imagecache imagecache-article_xlarge" style="" /></a> <span class='image_meta'><span class='image_title'>Meeting with Maasai traditional birth attendants. Photo: Bernard Paul Muyanda. ACORD</span></span></span></p> <p>Pastoralist women in many parts of Africa, including <a href="http://www.tandfonline.com/doi/abs/10.2989/16085906.2016.1148060">Northeast</a> Africa and <a href="http://journals.lww.com/jaids/Fulltext/2009/06012/251_Migration,_Pastoralists,_HIV_Infection_and.156.aspx">Nigeria</a>, face many cultural practices which increase their vulnerability to HIV. At the current International AIDS Conference in <a href="http://www.aids2016.org/">Durban</a>, despite it taking place on the same continent, there are no sessions or abstracts listed in relation to pastoralists at all. I would love to be there to raise awareness of pastoralist women’s rights myself, but with no funds available to travel, register or stay there, I am glad to be able to write about some of the issues they face here.</p><p>In Tanzania, the Maasai, Sonjo, Hadzabe and Mang’ati people number about <a href="http://catalog.ihsn.org/index.php/catalog/4618">170,000</a>, 51% of whom are female, living across 14,000 km. Whilst seeking to preserve their culture despite modern world pressures, they still embrace a system that denies most women and girls basic human rights. Lack of inheritance rights leave widows and their children very vulnerable when a man dies. In addition, pastoralist women lack access to political power or representation and frequently have development policies imposed upon them. </p> <p>Tanzania has a 4.7% adult HIV prevalence rate, with 60% of the 1.3 million adults being women. Traditional practices which can increase HIV transmission include polygamy; female genital mutilation with un-sterile instruments; home-based childbirth with traditional birth attendants (TBAs) who are unskilled in modern sterile practices; early and forced marriages by older men where a young girl has no chance to say no to unprotected sex.&nbsp;Traditionally, girls do not attend school because they marry soon after their 12th&nbsp;birthday, despite primary education in Tanzania being compulsory and both primary and secondary education being free.&nbsp; </p> <p>These cultural <a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3830632/">practices</a>, gender inequalities and inadequate knowledge for most women – and men - about sexual and reproductive health (SRH) issues and HIV transmission limit their decision-making abilities regarding when to have sex, whether or not to use a condom or other contraceptive methods, whether or not to get pregnant, and whether or not to get tested for HIV or other STIs. </p> <p>Deprived of rights to access basic needs such as healthcare, or a balanced diet, women are also particularly vulnerable to domestic violence, as their fragile socio-economic systems worsen. Furthermore, men and women face different challenges in living with HIV and AIDS, in access to health and support services, and with regard to stigma attached to the epidemic. Women have much less time and much less opportunity than men to access services. </p> <p>Whilst laws do <a href="http://www.lexadin.nl/wlg/legis/nofr/oeur/lxwetan.htm">exist</a> to prevent violation of women’s and children’s rights, their enforcement especially in Ngorongoro District is problematic. For example, whilst female genital mutilation and early FGM and ECM are illegal, pastoral communities still practise them in ceremonies involving long periods of preparations, huge numbers of girls, and traditional leaders and local community members. So HIV transmission through these routes continues. </p> <p>To be effective, HIV and SRH services have to be accessible for all. Although public health facilities are free, such services are often underutilized and not available in all facilities. Other factors also affect SRH services, including demographic, economic, social and cultural dynamics, power relations and gender inequity, discrimination, sexual and domestic violence among others. For example, most public SRH programmes have focused uniquely on maternal and child health, but have left out other important populations including men, adolescents, and women who are not pregnant or mothers. These services have also focused more on the health facility level and have largely ignored other critical socio-cultural and economic barriers to accessing SRH information and services, such as women’s ability to buy condoms or negotiate their use. </p> <p>Health providers, particularly those providing SRH and HIV services, have not been trained to interact with the community groups in a way that takes into account the traditional cultural taboos facing women and adolescent girls, people with disabilities and women heads of households - or the newer taboos of stigma and discrimination facing people living with HIV. Thus the education they provide is not tailored to meet their needs, realities and concerns. </p> <p>For example, although the government of Tanzania is encouraging all women to have their babies at health facilities, in Ngorongoro almost 60% of births still occur at home with support from traditional birth attendants owing to long distances and other cultural, reasons and much work is needed to strengthen their skills and knowledge about how to protect everyone from HIV, while assisting women in home delivery. For instance, some birth attendants who are in high demand may have been diagnosed with HIV themselves, but are still having to conduct home deliveries without access to appropriate protective skills or equipment. </p> <p>Meanwhile, most women, adolescent girls and young mothers have insufficient information on peri-natal transmission of HIV and safe motherhood. Only 38% of women with HIV who are on anti-retroviral treatment (ART) reported that their clinic discussed family planning with <a href="http://www.acordinternational.org/acord/en/our-work/where/tanzania/reaching-the-poorly-served/">them</a>. &nbsp;Available contraceptive prevalence data indicated a rate far below the national average. Women usually seek contraceptive advice from their husbands - who often know nothing and instead may mislead and prohibit its use. There is thus a great need to empower women to make informed choices about their SRH, giving them more autonomy and greater confidence to engage with structures and institutions that are critical to ensuring equitable access to services. </p> <p>Much has been done to prevent and respond to SGBV issues within the district through key duty bearers, including police, judiciary, frontline health workers, police, members of human rights organizations, religious leaders, traditional leaders, media representatives, women councilors and local leaders. They have jointly developed a working group, work plan and terms of reference for their network. Yet much is still needed, to involve male community leaders to gain trust and motivate community members, including men who are the key perpetrators, strengthening the capacity of the SGBV district network members and increasing community awareness. </p> <p>Reducing vulnerability to SGBV and HIV and mitigating their effect raises many challenges that require linkages with interventions on gender and livelihoods, while promoting integration of SRH services and HIV, to ensure universality of information and services. </p> <p>This requires investment in the socio-economic development of women, men, children, household and communities at large. Decisions to invest in them should thus be taken by policy makers who are responsible for socio-economic development and not only by those responsible for health.&nbsp; The mainstreaming of SRH and HIV into development programming, centered specifically on the nomadic lifestyle and culture of these pastoralist communities, is critical in enhancing their access to human rights. </p> <p>Due to stigma attached to adolescent sexuality, there have also been pockets of opposition to youth access to SRH information and services, for fear of promoting promiscuity. Yet I believe young people are the potential agents of change; they need better information for their SRH, and skills to embrace their own local culture and to change what hurts them (domestic violence, FGM, early and forced marriages). Much has been done which is stimulating great debate about cultural practices among youth groups. There is great need for supporting and engaging the young generation as agents for change, in particular by supporting school-based and out-of-school programmes on SRH, human rights, SGBV and HIV/AIDS. </p> <p>In addressing cultural and gender barriers to accessing to SRH, it is of paramount importance to support training programmes such as <em><a href="http://steppingstonesfeedback.org/index.php/page/Resources/gb?resourceid=85">Stepping Stones</a></em> which uses a holistic rights-based approach. The training will work specifically with traditional structures and traditional leaders (both male and female), as well as with service providers. These include birth attendants, ngarimuratanyi who practise female genital mutilation, women and male elders, community volunteers, as well as health workers, youth workers and teachers, and ‘SGBV value chain actors’. This process will enable us to identify. Once sensitive social and cultural practices are identified, we can then develop a dialogue for action on which practices should be modified or changed in order to reduce vulnerability to HIV and other SRH issues; on how to change attitudes towards women’s rights; and ultimately on how to tackle the cultural barriers to accessing better tailored HIV services. </p> <p><em>Read more articles articles on our platform:</em><strong> <a href="https://opendemocracy.net/5050/5050-aids-gender-and-human-rights">AIDS, Gender and Human Rights</a></strong></p><fieldset class="fieldgroup group-sideboxs"><legend>Sideboxes</legend><div class="field field-related-stories"> <div class="field-label">Related stories:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> <a href="/5050/alice-welbourn/hivaids-and-holistic-healthcare-can-spirituality-and-science-meet">HIV, AIDS and holistic healthcare: can spirituality and science meet?</a> </div> <div class="field-item even"> <a href="/5050/ida-susser-zena-stein/bioinsecurity-and-hivaids">Bio-insecurity and HIV/AIDS </a> </div> <div class="field-item odd"> <a href="/5050/hajjarah-nagadya/aids-targets-fear-factor">AIDS targets: the fear factor </a> </div> <div class="field-item even"> <a href="/ending-HIV-ideology-vs-evidence-at-UN">Ending HIV: ideology vs evidence at the UN</a> </div> <div class="field-item odd"> <a href="/5050/marama-pala/nobody-left-behind-lives-of-indigenous-women-with-hiv">Nobody Left Behind? 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Faith healing, HIV and AIDS responses</a> </div> <div class="field-item odd"> <a href="/5050/anonymous/hiv-homophobia-and-historical-regression-where-next-for-uganda">HIV, homophobia and historical regression: where next for Uganda?</a> </div> <div class="field-item even"> <a href="/5050/susana-t-fried-alice-welbourn/confinement-of-eve-resolving-ebola-zika-and-hiv-with-women-s-bodi">The confinement of Eve: resolving Ebola, Zika and HIV with women’s bodies?</a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/hiv-witnessing-realisation-of-raw-human-rights">HIV: witnessing the realisation of raw human rights</a> </div> <div class="field-item even"> <a href="/5050/nell-osborne/against-coerced-sterilisation-resounding-victory-in-namibia">Against coerced sterilisation: a resounding victory in Namibia</a> </div> <div class="field-item odd"> <a href="/5050/susan-paxton/positive-and-pregnant-in-asia-how-dare-you">Positive and pregnant in Asia - How dare you</a> </div> </div> </div> </fieldset> <div class="field field-country"> <div class="field-label"> Country or region:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> Tanzania </div> </div> </div> <div class="field field-rights"> <div class="field-label">Rights:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> CC by NC 4.0 </div> </div> </div> 50.50 50.50 Tanzania 50.50 AIDS, Gender and Human Rights 50.50 Our Africa women's health gendered poverty 50.50 newsletter Glory Mlaki Tue, 19 Jul 2016 08:27:33 +0000 Glory Mlaki 103967 at https://www.opendemocracy.net HIV, AIDS and holistic healthcare: can spirituality and science meet? https://www.opendemocracy.net/5050/alice-welbourn/hivaids-and-holistic-healthcare-can-spirituality-and-science-meet <div class="field field-summary"> <div class="field-items"> <div class="field-item odd"> <p>The theme of next week's World Aids Conference in Durban, South Africa is '<em>Access, Equity, Rights Now</em>'. Will its debates offer the whole answer to those preventing - or living with - HIV?</p> </div> </div> </div> <p><span class='wysiwyg_imageupload image imgupl_floating_none 0'><a href="//cdn.opendemocracy.net/files/imagecache/wysiwyg_imageupload_lightbox_preset/wysiwyg_imageupload/501857/HIVholistichealthwordcloudNellOsborne.jpg" rel="lightbox[wysiwyg_imageupload_inline]" title=""><img src="//cdn.opendemocracy.net/files/imagecache/article_xlarge/wysiwyg_imageupload/501857/HIVholistichealthwordcloudNellOsborne.jpg" alt="" title="" width="460" height="295" class="imagecache wysiwyg_imageupload 0 imagecache imagecache-article_xlarge" style="" /></a> <span class='image_meta'><span class='image_title'>HIV holistic health word cloud. Image: Nell Osborne, Salamander Trust</span></span></span>Next week the annual International AIDS Conference opens in <a href="http://www.aids2016.org/">Durban</a>, South Africa, attended by over 20,000 people from around the world. The scope of the conference alternates each year from being a <a href="http://ias2015.org/Default.aspx?pageId=739">pathogenesis</a> conference with very little social science input, to the one this year which includes community issues as well as science. This <a href="http://www.aids2016.org/Programme/Abstracts/Track-Categories">one</a> has three largely scientific tracks, two largely social political and economic tracks, and one “cross track”. </p><p>The conference theme this year is “Access, Equity, Rights Now” and there is already huge tension in the air around at least two issues. &nbsp;Firstly, there is the question of who may have these rights. At the UN High Level <a href="http://www.hlm2016aids.unaids.org/index.php/en/home/">Meeting</a> in June, there were considerable gains in recognition of women’s rights and the widespread harms of gender-based violence, such as in its capacity both to increase <a href="http://www.who.int/reproductivehealth/publications/violence/VAW_infographic.pdf?ua=1">vulnerability</a> to, and to result <a href="https://www.opendemocracy.net/5050/alice-welbourn-luisa-orza/welcome-to-our-house-women-living-with-hiv">from</a>, HIV. However, he meeting &nbsp;was also deeply marred by the exclusion of key <a href="http://files.unaids.org/en/media/unaids/contentassets/documents/unaidspublication/2014/UNAIDS_Gap_report_en.pdf">populations</a> - including lesbian, gay or bisexual people, trans* people, sex workers, people who use drugs, and others - from the process, and the limited recognition by UN and many governments alike of the issues these people <a href="https://www.opendemocracy.net/susana-t-fried/ending-hiv">face</a>.</p><p>Secondly, there is the question of what aspects of this conference theme people might gain access to. &nbsp;There is tension here because it has now been recognised that HIV medication taken by someone when they don’t have HIV can protect them from acquiring it. So there is a huge push for roll-out of this Pre-Exposure Prophylaxis (<a href="http://www.whatisprep.org">PrEP</a>), from scientists and community activists alike. This is so that anyone who may be vulnerable to acquiring HIV might avoid doing so. Yet here is a slippery slope scenario. I have described this scenario in an earlier <a href="https://opendemocracy.net/5050/alice-welbourn/hiv-free-generation-human-sciences-vs-plumbing">article</a> on openDemocracy before in the whole debate around treatment as prevention (TasP), where people with HIV, especially women in the case of “Option B+” are encouraged to take HIV medication primarily to protect others. </p><p>The new slippery slope now starts with the principle of individuals being offered well informed <a href="http://www.ids.ac.uk/events/twitter-chat-where-are-the-women-in-discussions-about-prep-for-hiv">choice</a> over if, when, and how long to take medication in the context of personal bodily autonomy. These well-intentioned strategies can quickly morph into a situation where individuals are being told that this is what they should do, and they can find themselves scorned and <a href="http://www.ids.ac.uk/news/implications-of-prep-medication-as-hiv-prevention-for-sex-workers">damned</a> if they <a href="https://www.opendemocracy.net/5050/susan-paxton/aids-2014-where-are-women-we-need-to-step-up-pace">don’t</a>. </p><p>Once again, with Pre-Exposure Prophylaxis (PrEP), as with Treatment as Prevention (TasP), we are looking at a double-edged sword: there is the risk that medication is seen as the simple magical bullet, without consideration of the <a href="http://www.powercube.net/other-forms-of-power/expressions-of-power/">power</a> relations involved in who gets to <a href="http://salamandertrust.net/wp-content/uploads/2016/04/Am_I_Lost_to_Follow_up_or_Bullied_Out_of_Care.pdf">choose</a> what is put in their own bodies – and the potential negative and positive consequences for them, both if they do, and if they don’t.</p><p>Although the science now tells us that all of us who test positive for HIV should be encouraged to start on HIV medication <a href="http://www.who.int/mediacentre/news/statements/2015/antiretroviral-therapy-hiv/en/">straightaway</a>, including PrEP for those who test <a href="http://www.nejm.org/doi/full/10.1056/NEJMp1502020">negative</a>, we humans have a complex relationship with medication which can’t be set aside. In particular, for the majority of women living with HIV, it is not just a question of the effects of the virus versus the effects of the drugs on our bodies: there are also the fundamental factors of gender-based violence and mental health in the <a href="https://www.opendemocracy.net/5050/alice-welbourn-luisa-orza/welcome-to-our-house-women-living-with-hiv">equation</a>.</p><p>I was lucky enough to be able to choose when to start my own anti-retroviral treatment (ART). I waited for 8 years after I was diagnosed in 1992. Whilst I believe in the critical importance of treatment when someone feels ready to take it, I was not ready to take it before then, and may well not have managed to adhere to it as religiously as I have since 2000. It makes good <a href="https://www.opendemocracy.net/alice-welbourn/hiv-and-aids-language-and-blame-game">gardening</a> sense to prepare the ground before planting, to give seeds their best chance of survival. My very good health now means I do not even have to pay an HIV-related premium for my annual health insurance. So I am one example at least of where waiting until I felt ready for treatment has caused no apparent harm and may well have had a better long-term result.</p><p>Until scientists include such key psycho-<a href="http://salamandertrust.net/wp-content/uploads/2016/04/web_UNWomenetal_IAS-treatment_access-4pp.pdf">social</a> factors in their trials, their findings are not yet fit for real life implementation. One simple example of this is the question of how women on PrEP are supposed to protect themselves from unplanned pregnancies and other sexually transmitted infections without continued condom use, since PrEP only prevents HIV transmission. Yet to date I have seen little substantive discussion of this. &nbsp;The question of who owns the rights to an individual’s bodily autonomy once again becomes a stomping ground for those institutions or people with power – and pity help those <a href="https://vimeo.com/album/3879429/video/123720237">without</a> it.</p><p>During this World Aids Conference openDemocracy will be publishing several&nbsp; articles addressing these on-going enormous challenges and others. However here I want to look at a wider perspective that is rarely mentioned - one that embraces the whole person as a sentient being, rather than one that views us just as passive recipients of medical interventions. Holistic healthcare is not new at all: &nbsp;traditional Chinese <a href="https://en.wikipedia.org/wiki/Traditional_Chinese_medicine">holistic</a> approaches to healthcare have been around for millennia. But it is still very <a href="http://www.nytimes.com/2013/09/20/science/candace-pert-67-explorer-of-the-brain-dies.html?_r=0">slow</a> to be accepted by mainstream Western practitioners. Yet I am just one of many living with HIV who rely not just on our medication, but also on keeping a close eye on our diet, our <a href="https://www.opendemocracy.net/content/balancing-on-wheels-of-hope">exercise</a> regime, and other stress-relief practices such as <a href="https://hivpolicyspeakup.wordpress.com/ashtanga-yoga-and-hiv/">yoga</a> and meditation and other spiritual practice – in its widest sense.</p><p>Some HIV doctors and policy makers deride our interest in these complementary approaches to health and well-being as irrelevant at best, and really quite threatening at worst - dismissing them as subversive to the treatment roll-out mantra. Yet how can someone who does not even have adequate, let alone nutritious, food in their stomach, be expected to start and stay on treatment?</p><p>Hippocrates wrote “let your food be your treatment and your treatment your food” 2,400 years ago. Yet the most recent World Health Organisation (WHO) anti-retroviral guidelines barely mention <a href="http://apps.who.int/iris/bitstream/10665/208825/1/9789241549684_eng.pdf">food</a>, other than in one brief section.</p><p>One colleague, a medical doctor and psychologist living with HIV, <a href="https://opendemocracy.net/5050/heidemarie-f-kremer/usa-banning-people-with-hiv-from-attending-aids-2012-conference">Heidemarie Kremer</a>, has taken another route, publishing research that studied 177 people with HIV over 17 years, which shows that some people using spiritual strategies were 2–4 times more likely to survive. When women’s capacity to start and adhere to treatment can be affected fundamentally by factors such as <a href="http://www.jiasociety.org/index.php/jias/article/view/20285">gender- based violence </a>&nbsp;and mental <a href="http://www.jiasociety.org/index.php/jias/article/view/20289">health</a>, then if spirituality can help to alleviate these challenges, surely that is a huge asset. Spirituality is something which resonates strongly with many of us. Yet there is no funding in this line of research, and Kremer has now had to abandon academia for other pursuits.</p><p>Another example of the wide breadth of riches that holistic healthcare has to offer, and the relatively tiny spot on this map that western healthcare offers, is provided by a wonderful book that my sister recently shared with me, that she learnt about at the Penny Brohn Centre for living well with <a href="http://www.pennybrohn.org.uk/">cancer</a>. This centre embraces a whole-life approach to cancer, alongside western treatment. <a href="http://www.radicalremission.com/index.php/about">Radical Remission, </a>written by Kelly Turner, a Harvard and Berkeley trained psychologist, explores the nine most mentioned key factors identified by over 1,000 people with cancer whose stories she analysed, as alternative methods of healing: body, mind and spirit interventions which may have led to a statistically unexpected positive outcome for them. These factors include radical changes to <a href="http://www.cancersupportinternational.com/beat%20cancer%20release.pdf">diet</a>, taking control of our health, following our intuition, using herbs and supplements, releasing suppressed emotions, embracing social support, deepening our spiritual connection and having strong reasons for living.</p><p>Since none of these factors have or can be subjected to the rigours of a randomised <a href="http://www.bmj.com/content/316/7126/201">controlled</a> trial (RCT), as all medication has to be, (and which scientists take as the gold standard for medical intervention), it is understandably all too easy for many western healthcare providers to dismiss these factors as quackery. Yet, as Turner explains, finding funds for an RCT of these factors, when they are normally funded by pharma (and no pharmaceutical company can see potential financial gains from patenting a specific trialled product), is nigh impossible, since it is thankfully not easy for them to take out a <a href="http://news.bbc.co.uk/1/hi/sci/tech/745028.stm">patent</a> on a particular food or on yoga.</p><p>I am not trying to draw simplistic parallels between HIV and cancer here. Whilst some people with cancer really do manage to recover <a href="http://www.radicalremission.com">spontaneously</a>, to date there have only been <a href="http://www.bbc.co.uk/news/health-33542749">fourteen</a> people formally recorded to be in remission from <a href="http://www.iasociety.org/Web/WebContent/File/HIV_Cure_Visconti_Cohort_Media_Coverage.pdf">HIV</a>. Whilst HIV scientists accept that they really seem to be “functionally cured”, they use their existence to call for more bio-medical research into an HIV cure, and for early treatment after diagnosis. There seems little consideration of whether other factors might be at play in keeping them well. I don’t think I am so lucky as not to need antiretroviral therapy (ART). So it will certainly remain a crucial part of my health strategy. I am just trying to explain that, as Kelly Turner states in her book, the pursuit of any or all of these complementary strategies will certainly not harm us, and may well enable us to stay happy, healthy and safe, when we decide if, when, and how long to take our medication.</p><p>It is not easy airing these sorts of things in public. Even in the world of cancer, a holistic approach to healthcare is still mocked by many. In the world of HIV, it is even harder to discuss these things. Sadly my sister was not one of those fortunate few who found remission. But she did take to cancer with curiosity and creative thinking – determined to live life to the full with it, rather than be crushed by it. Whilst recognizing the importance and value of conventional treatment, she also decided to learn through her experience of living with cancer, to develop further her spiritual growth within.,</p> <p>If nothing else, I want to learn and to grow from both my sister’s and my own experiences. &nbsp;For me, “access, equity, rights now” include my ability to take a holistic approach to my own healthcare. The drugs are hugely important but they are not – and will never be - the whole story.</p><p><strong><em>Read more articles in openDemocracy 50.50's dialogue on</em>&nbsp; <a href="https://opendemocracy.net/5050/5050-aids-gender-and-human-rights">AIDS Gender and Human Rights</a></strong></p><fieldset class="fieldgroup group-sideboxs"><legend>Sideboxes</legend><div class="field field-related-stories"> <div class="field-label">Related stories:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> <a href="/5050/alice-welbourn-luisa-orza/welcome-to-our-house-women-living-with-hiv">Welcome to our house: women living with HIV</a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/hiv-and-global-plan-turning-tide-or-wash-out-for-women">HIV and the Global Plan: turning the tide or a wash-out for women?</a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/absence-of-evidence-does-not-mean-evidence-of-absence">Absence of evidence does not mean evidence of absence</a> </div> <div class="field-item even"> <a href="/5050/ida-susser/microbicide-success-feminism-is-essential-to-good-science">A microbicide success: feminism is essential to good science</a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/hiv-free-generation-human-sciences-vs-plumbing">An HIV-free generation: human sciences vs plumbing </a> </div> <div class="field-item even"> <a href="/ending-HIV-ideology-vs-evidence-at-UN">Ending HIV: ideology vs evidence at the UN</a> </div> <div class="field-item odd"> <a href="/susana-t-fried/ending-hiv">Ending HIV: UN slogans vs the voices of civil society </a> </div> <div class="field-item even"> <a href="/5050/susan-paxton/positive-and-pregnant-in-asia-how-dare-you">Positive and pregnant in Asia - How dare you</a> </div> <div class="field-item odd"> <a href="/5050/hajjarah-nagadya/aids-targets-fear-factor">AIDS targets: the fear factor </a> </div> <div class="field-item even"> <a href="/5050/silvia-petretti/i-am-one-of-those-foreigners-living-with-hiv-in-uk">&quot;I am one of those foreigners&quot;: living with HIV in the UK</a> </div> <div class="field-item odd"> <a href="/5050/aziza-ahmed-jm-kirby/preventing-hiv-decriminalisation-of-sex-work">Preventing HIV: the decriminalisation of sex work</a> </div> <div class="field-item even"> <a href="/5050/aziza-ahmed/sterilized-against-our-will">Sterilized: against our will </a> </div> <div class="field-item odd"> <a href="/5050/lyric-thompson/groundbreaking-policy-us-support-for-sexual-and-reproductive-health-and-rights">CSW: groundbreaking US support for sexual rights </a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/when-things-fall-apart">When things fall apart</a> </div> <div class="field-item odd"> <a href="/5050/susana-t-fried-alice-welbourn/confinement-of-eve-resolving-ebola-zika-and-hiv-with-women-s-bodi">The confinement of Eve: resolving Ebola, Zika and HIV with women’s bodies?</a> </div> <div class="field-item even"> <a href="/5050/heidemarie-f-kremer/usa-banning-people-with-hiv-from-attending-aids-2012-conference">USA: banning people with HIV from attending the AIDS 2012 conference </a> </div> <div class="field-item odd"> <a href="/5050/jessica-horn/accepted-mishaps-faith-healing-hiv-and-aids-responses">Accepted mishaps? Faith healing, HIV and AIDS responses</a> </div> </div> </div> </fieldset> <div class="field field-rights"> <div class="field-label">Rights:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> CC by NC 4.0 </div> </div> </div> 50.50 50.50 50.50 AIDS, Gender and Human Rights 50.50 Editor's Pick 50.50 Voices for Change women's human rights women's health bodily autonomy 50.50 newsletter Alice Welbourn Fri, 15 Jul 2016 08:27:33 +0000 Alice Welbourn 103932 at https://www.opendemocracy.net Ending HIV: UN slogans vs the voices of civil society https://www.opendemocracy.net/susana-t-fried/ending-hiv <div class="field field-summary"> <div class="field-items"> <div class="field-item odd"> <p>Last week’s UN meeting exposed the deep divide about whether HIV responses should commit to respecting, protecting and fulfilling human rights rather than blaming those who are most affected.</p> </div> </div> </div> <p><span class='wysiwyg_imageupload image imgupl_floating_none 0'><a href="//cdn.opendemocracy.net/files/imagecache/wysiwyg_imageupload_lightbox_preset/wysiwyg_imageupload/501857/2016-06-09-PHOTO-00001808.jpg" rel="lightbox[wysiwyg_imageupload_inline]" title=""><img src="//cdn.opendemocracy.net/files/imagecache/article_xlarge/wysiwyg_imageupload/501857/2016-06-09-PHOTO-00001808.jpg" alt="" title="" width="460" height="345" class="imagecache wysiwyg_imageupload 0 imagecache imagecache-article_xlarge" style="" /></a> <span class='image_meta'><span class='image_title'>Steve Mmapaseka Letskie speaking at the UN Opinion Leaders Dialogue on what it will take to end AIDS. Photo: UN</span></span></span></p><p>The week of activities connected to the UN high level meeting on ending AIDS was a week of dramatic contrasts.&nbsp; On Wednesday 7 June, the formal opening of the meeting, Member States at the high level meeting (HLM) adopted an underwhelming <a href="http://www.un.org/apps/news/story.asp?NewsID=54172#.V12l1bsrKpA">Political Declaration on Ending AIDS</a>.&nbsp; The title far more forward-looking than the words it contains. </p><p>As I wrote in my <a href="https://opendemocracy.net/ending-HIV-ideology-vs-evidence-at-UN">article</a> published on openDemocracy last week, the meeting was a study in exclusion and misrepresentation of many of the characteristics of HIV epidemics. While the declaration itself fell victim to UN political ping-ponging, the gap between the relative weakness of the commitments and the level of need was repeatedly noted by Member States and civil society alike, as well the visible presence of the very groups who were barely mentioned in the declaration. The urgency of greater attention to “key populations” (i.e. gay and other men who have sex with men, transgender people, sex workers, drug users and prisoners) was a fortunately common topic in both side event, formal panels and in many Members States formal statements.&nbsp; </p> <p>Several issues were hotly contested as noted in a <a href="http://www.icaso.org/announcements/civil-society-and-communities-declaration-to-end-hiv-human-rights-must-come-first">Civil Society and Communities Declaration.</a> In this “alternative” declaration, civil society and communities of people living with and affected by HIV declared their outrage “with language that highlights victimization and blames key populations and fuels discrimination.&nbsp; Euphemisms have no place in evidence-based HIV responses, and leave the door open for HIV responses that are driven by ideology, rather than informed by evidence and rights-based obligation.&nbsp;People in vulnerable contexts are the people leading the fight against the epidemic, and should be recognized for their leadership role and as subjects of rights.”&nbsp; </p><p>Member States also zeroed in on some of these gaps: in an HLM panel entitled “Leaving no one behind: ending stigma and discrimination through social justice and inclusive societies," the <a href="http://statements.unmeetings.org/media2/7658835/ecuador.pdf">representative of Ecuador</a>, Sra. Verónica Espinosa, noted that in the area of intellectual property, it is essential to weigh the right to health against the privileges of intellectual property, with greater weight given to health and rights.&nbsp; The representative of Cuba, Ms. Mariela Castro (from a country not always known for its warm embrace of LGBTI communities), in <a href="http://statements.unmeetings.org/media2/7658831/cuba.pdf">her statement</a> at the same panel stressed that “sexual and reproductive rights and with the full participation of civil society,” were key to effective HIV responses, and referred to their strategy of comprehensive sexuality education [including] the sexual rights of LGBTI people.” &nbsp;The former president of Fiji, <a href="http://webtv.un.org/meetings-events/watch/panel-discussion-1-ending-aids-8-10-june-2016-hlm2016aids-general-assembly-high-level-meeting/4931960048001#full-text">HE Mr. Ratu Epeli Nailatikau</a>, co-chaired the first panel, calling for using AIDS as a pathfinder for social transformation and social justice, including everyone’s entitlement to enjoy basic human rights.&nbsp; He delineated the steps that Fiji has taken in the fight against HIV including the decriminalization of same sex conduct and lifting travel restrictions on people living with HIV “in order to pave the way to a more inclusive society.” In the same panel, the representative from <a href="http://webtv.un.org/meetings-events/watch/panel-discussion-1-ending-aids-8-10-june-2016-hlm2016aids-general-assembly-high-level-meeting/4931960048001#full-text">Switzerland</a> proudly described the country’s harm reduction practices.&nbsp; Noting that 25 years ago, Switzerland had the highest prevalence of HIV because the large number of users in the country, emphasizing removing discrimination and expanding access to treatment for drug users.&nbsp; Further, she stressed the importance of multi-stakeholder strategies, including the police force, health workers and civil society. </p><p>Statements such as those from Ecuador, Cuba, Switzerland and Fiji focused attention on many of the very topics that were skimmed over in the declaration:&nbsp; the right to health over intellectual property privileges, the importance of comprehensive sexuality education, the affirmation of sexual and reproductive rights, and the critical fact of recognizing the rights of LGBTI people. Encouraging as the recognition by Member States of key populations, human rights and sexual and reproductive rights was, ultimately, civil society speakers rocked the house. </p> <p>Speaking at the "Opinion Leaders Dialogue on what it will take to end AIDS", Steve Mmapaseka Letskie stressed that "Leadership goes hand in hand with accountability, which both requires a framework that is shared and respected by all Sectors. The HIV response needs shared responsibility and leadership&nbsp;between Government, Civil Society, Private Sector and Development Partners. South Africa is a great example of multisectoral response to HIV, TB and STIs. We as Civil Society join in the call to lead and as well as to hold each other accountable".</p> <p>Capturing many of the sentiments of civil society speakers in a panel on “Breaking the Silos:&nbsp; integrated services for adolescent girls and young women” on 7 June, <a href="http://webtv.un.org/meetings-events/watch/breaking-the-silos-integrated-services-for-adolescent-girls-and-young-women-side-event-at-the-high-level-meeting-on-hivaids-8-10-june-2016-hlm2016aids/4933047517001">L’Orangelis Thomas Negron</a> demanded that Member States implement “comprehensive education on sexual and reproductive health and rights, and to ensure the access to every women, young woman, adolescent and girls, in all our diversity, including key populations…I make this call because at this point of the game, coming here to share my experiences and stories, share our pain, without having concrete compromises and actions, is another way of&nbsp; tokenisms.<em> </em>You don’t get to use our pain to do what is right<strong>.</strong>”&nbsp; She continued, noting “Times have changed, and so have generations. e must now speak about sex – oral sex, vaginal sex, anal sex, sexual pleasure and freedom. It’s outrageous that many young women living with HIV are not able to enjoy their sexual lives. We need government that provide for us instead of controlling us, controlling our bodies and controlling our autonomy.”</p> <p>Bold words, sadly not matched by bold commitments to action. As the <a href="http://www.icaso.org/announcements/civil-society-and-communities-declaration-to-end-hiv-human-rights-must-come-first">Civil Society Declaration</a> proclaimed, “Slogans and simple answers will not end the AIDS epidemic.<strong>&nbsp;</strong>The diversity of today’s HIV epidemics demands diverse, evidence-informed, rights-based and gender-transformative responses. Political leaders at the community, national, regional and global levels must recommit to take real steps to end this epidemic.”&nbsp; Maybe by 2021 Member States will get it right.</p><fieldset class="fieldgroup group-sideboxs"><legend>Sideboxes</legend><div class="field field-related-stories"> <div class="field-label">Related stories:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> <a href="/ending-HIV-ideology-vs-evidence-at-UN">Ending HIV: ideology vs evidence at the UN</a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn-luisa-orza/welcome-to-our-house-women-living-with-hiv">Welcome to our house: women living with HIV</a> </div> <div class="field-item odd"> <a href="/5050/cecilia-chung/hiv-call-for-solidarity-with-transgender-community">HIV: a call for solidarity with the transgender community </a> </div> <div class="field-item even"> <a href="/5050/aziza-ahmed/is-evidence-all-it-will-take">Is evidence all it will take? </a> </div> <div class="field-item odd"> <a href="/5050/ida-susser-zena-stein/bioinsecurity-and-hivaids">Bio-insecurity and HIV/AIDS </a> </div> <div class="field-item even"> <a href="/5050/louise-binder/criminal-law-hiv-and-violence-against-women">Criminal law: HIV and violence against women</a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/end-to-aids-not-through-medication-alone">An end to AIDS?: Not through medication alone</a> </div> <div class="field-item even"> <a href="/5050/ida-susser/hiv-fight-for-trade-related-intellectual-property-regulations">HIV: the fight for trade related intellectual property regulations</a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/hiv-witnessing-realisation-of-raw-human-rights">HIV: witnessing the realisation of raw human rights</a> </div> </div> </div> </fieldset> <div class="field field-rights"> <div class="field-label">Rights:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> CC by NC 4.0 </div> </div> </div> 50.50 50.50 50.50 AIDS, Gender and Human Rights 50.50 Editor's Pick 50.50 Voices for Change women's health gender justice bodily autonomy 50.50 newsletter Susana T. Fried Wed, 15 Jun 2016 08:27:33 +0000 Susana T. Fried 102958 at https://www.opendemocracy.net Ending HIV: ideology vs evidence at the UN https://www.opendemocracy.net/ending-HIV-ideology-vs-evidence-at-UN <div class="field field-summary"> <div class="field-items"> <div class="field-item odd"> <p>This week’s negotiations over the UN’s <em>Political Declaration Ending AIDS</em> are rife with circular debates, and sex, gender and sexuality are flashpoints of polarization.&nbsp; </p> </div> </div> </div> <p><span class='wysiwyg_imageupload image imgupl_floating_none 0'><a href="//cdn.opendemocracy.net/files/imagecache/wysiwyg_imageupload_lightbox_preset/wysiwyg_imageupload/535193/CopyrightUNAIDSpeopleA.jpg" rel="lightbox[wysiwyg_imageupload_inline]" title=""><img src="//cdn.opendemocracy.net/files/imagecache/article_xlarge/wysiwyg_imageupload/535193/CopyrightUNAIDSpeopleA.jpg" alt="" title="" width="460" height="184" class="imagecache wysiwyg_imageupload 0 imagecache imagecache-article_xlarge" style="" /></a> <span class='image_meta'><span class='image_title'>"Ending AIDS requires evidence-informed, rights-based global leadership”. Photo: UNAIDS</span></span></span></p><p>When you hang around the United Nations long enough, you hear some of the strangest things.&nbsp; In the past few months, I’ve been following the process leading up to the <a href="http://www.unaids.org/en/aboutunaids/unitednationsdeclarationsandgoals/2016highlevelmeetingonaids">UN High Level Meeting on Ending AIDS</a> (8-10 June) in New York.&nbsp; In advance of the meeting, Member States of the UN have been negotiating a <em>Political Declaration on Ending AIDS</em> that’s supposed to represent the way forward. Though one might hope that such a global stocktaking would be dominated by conversations that move us toward a vision for “ending AIDS epidemic by 2020,” it has been quite the contrary. The space of diplomacy in 2016 is often rife with circular debates in which wealthy countries resist financial commitments for addressing key concerns, and evidence-informed information is contested by extremist politics and conservative ideas about gender, sex and sexuality.</p> <p>In the current negotiations three disputes have reached new heights of absurdity: first, whether we can “name” the communities that are most affected by HIV globally - “key populations”- composed of men who have sex with men [MSM], transgender women, drug users and sex workers; second, whether evidence supports the claim that gender-based violence increases women’s and key populations’ vulnerability to HIV; and third, whether we can name “comprehensive sexuality education” as one important strategy to reduce vulnerability to HIV and increase access to services. The debates illustrate a toxic combination of cowardice, misogyny, homo-and trans-phobia, religious fundamentalism, and a closing of space for realistic discussion of how to solve pressing global challenges by governments and civil society together. </p> <p>The term “key populations” itself, as well as the groups that it encompasses, has been contested regularly by a number of member states of the UN. The resistance to using the term stems from a view that simply naming key populations acknowledges their existence without judgement. This might seem bizarre in the context of HIV where there is an abundance of evidence about “key populations” carrying the greatest burden of HIV across epidemic contexts.&nbsp; Perhaps this represents magical thinking that if “we don’t name them, they will go away.”&nbsp; This fantasy hampers effective HIV responses that require the full meaningful participation of all the people who are most affected.&nbsp; Not surprisingly civil society groups are contesting attempts to exclude and misrepresent:&nbsp; <a href="http://us1.campaign-archive1.com/?u=1efcb45b2d3a4abde06876054&amp;id=40098f83e3&amp;e=528b1c6c3b">in a strongly worded statement</a>, the Global Forum on MSM and HIV and the Global Network of Sex Work Projects noted: </p> <p class="blockquote-new">We emphatically reject revisionist characterizations of the global HIV epidemic.&nbsp; We do not accept negative characterizations of men who have sex with men, sex workers, transgender people, and people who inject drugs, and we certainly disagree with the idea that key populations are only worthy of mention in the context of discussions about risk – especially since it reinforces old stereotypes about our communities as being irresponsible.&nbsp; We are not surprised by these actions because using key populations as a political wedge is&nbsp;a routinely&nbsp;employed tactic by governments to subjugate, oppress, debase, and belittle its citizens.&nbsp;These are also tactics deliberately used to throw activists off their game and to distract global attention away from State-sanctioned abuses and corruption.</p> <p>Governments’ effort to mischaracterize and deny the association between gender-based violence and HIV is another example of the misinformation game being played at the UN. Fifteen years ago, at the time of the&nbsp; <a href="http://www.unaids.org/sites/default/files/sub_landing/files/aidsdeclaration_en.pdf">2001 Declaration of Commitment</a> (the outcome document from the UN General Assembly Special Session on HIV), evidence about the association between gender-based violence and HIV was extremely limited.&nbsp; While we had many testimonies, observations and logical analyses of the connection, there was almost no well-documented epidemiological evidence demonstrating the relationship. Over the past fifteen years this has changed, and today we have <a href="http://www.pepfar.gov/press/2013/205796.htm">solid empirical evidence of the connection</a>. The fact that some member states seek to deny the connection shows how many governments still refuse to grapple with the extensive reality of gender-based violence, especially violence against women and girls and violence against “key populations” (those unmentionable men who have sex with men, transgender people, drug users and sex workers). <span class='wysiwyg_imageupload image imgupl_floating_none 0'><a href="//cdn.opendemocracy.net/files/imagecache/wysiwyg_imageupload_lightbox_preset/wysiwyg_imageupload/535193/BCopyrightUNAIDSpeople-final-1 (1).jpg" rel="lightbox[wysiwyg_imageupload_inline]" title=""><img src="//cdn.opendemocracy.net/files/imagecache/article_xlarge/wysiwyg_imageupload/535193/BCopyrightUNAIDSpeople-final-1 (1).jpg" alt="" title="" width="460" height="200" class="imagecache wysiwyg_imageupload 0 imagecache imagecache-article_xlarge" style="" /></a> <span class='image_meta'></span></span></p><p>Finally, the current draft of the <em>Political Declaration</em> contains no reference to “comprehensive sexuality education.”&nbsp; This despite the fact that the draft declaration itself notes that “that only 36 per cent of young men and 28 percent of young women (15-24) possess accurate knowledge of HIV, and that laws and policies in some instances exclude young people from accessing sexual and reproductive health-care and HIV-related services..."<a href="http://www.advocatesforyouth.org/publications/publications-a-z/2390-sexuality-education">&nbsp; Comprehensive sexuality education</a> (CSE) means the provision of scientifically accurate, non-judgmental information about the body and puberty; including education about bodily development, sex, sexuality, and relationships, along with skills-building to help young people communicate about and make informed decisions about sexual health and sexuality. It attempts to empower people to deal positively with their sexuality, protect themselves from unwanted pregnancy, HIV and sexually transmitted infections, learn values of mutual respect and non-violence in relationships, and have the ability to plan their sexual and reproductive lives.&nbsp; Almost <a href="https://www.unfpa.org/sites/default/files/pub-pdf/CSE_Global_Review_2015.pdf">80 per cent of countries</a> have policies&nbsp;or strategies in place that support CSE. That some governments seem to see this important health and education strategy as anathema rather than essential to national HIV responses is scientifically indefensible and substantively difficult to explain. It represents a potentially life-threatening triumph of ideology over common sense. </p><p>Such disagreements illustrate how the process leading up to this High Level Meeting on Ending AIDS has been fraught.&nbsp; At the outset, a number of global and regional HIV networks focusing on LGBTI and drug users were excluded from participation. This isn’t unusual, especially as UN spaces today are marked by highly polarized ideological differences among governments and a persistent effort to close the space to active civil society engagement.&nbsp; However, given the urgency of engaging, educating and ensuring the exercise of rights for those who are most affected by HIV – women and girls (especially adolescent girls and young women in Eastern and Southern Africa), “key populations” (men who have sex with men, transgender women, people who inject drugs and sex workers), and young people – the choice to proffer ideology over evidence means that this meeting on <em>ending AIDS</em> unfortunately won’t meaningfully move us in that direction. </p> <p>The battle between ideology and evidence is set to continue at this week's UN High Level Meeting on Ending AIDS. </p> <p><em><strong>Read more articles on openDemocracy 50.50's platform: <a href="https://opendemocracy.net/5050/5050-aids-gender-and-human-rights">AIDS, Gender and Human Rights</a></strong></em></p><fieldset class="fieldgroup group-sideboxs"><legend>Sideboxes</legend><div class="field field-related-stories"> <div class="field-label">Related stories:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> <a href="/5050/alice-welbourn-luisa-orza/welcome-to-our-house-women-living-with-hiv">Welcome to our house: women living with HIV</a> </div> <div class="field-item even"> <a href="/5050/cecilia-chung/hiv-call-for-solidarity-with-transgender-community">HIV: a call for solidarity with the transgender community </a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/hiv-witnessing-realisation-of-raw-human-rights">HIV: witnessing the realisation of raw human rights</a> </div> <div class="field-item even"> <a href="/5050/ida-susser/microbicide-success-feminism-is-essential-to-good-science">A microbicide success: feminism is essential to good science</a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/aids-and-adolescents-denying-access-to-health">AIDS and adolescents: denying access to health </a> </div> <div class="field-item even"> <a href="/5050/ida-susser-zena-stein/bioinsecurity-and-hivaids">Bio-insecurity and HIV/AIDS </a> </div> <div class="field-item odd"> <a href="/5050/anonymous/hiv-homophobia-and-historical-regression-where-next-for-uganda">HIV, homophobia and historical regression: where next for Uganda?</a> </div> <div class="field-item even"> <a href="/alice-welbourn/hiv-and-aids-language-and-blame-game">HIV and AIDS: language and the blame game</a> </div> <div class="field-item odd"> <a href="/5050/susana-t-fried-sonia-correa/amnesty-international-should-sex-work-be-decriminalized">Amnesty International: should sex work be decriminalized? </a> </div> <div class="field-item even"> <a href="/5050/louise-binder/criminal-law-hiv-and-violence-against-women">Criminal law: HIV and violence against women</a> </div> <div class="field-item odd"> <a href="/5050/parinita-bhattacharjee/sex-work-violence-and-hiv-experience-from-rural-karnataka">Sex work, violence and HIV: experience from rural Karnataka</a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/end-to-aids-not-through-medication-alone">An end to AIDS?: Not through medication alone</a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/hiv-free-generation-human-sciences-vs-plumbing">An HIV-free generation: human sciences vs plumbing </a> </div> <div class="field-item even"> <a href="/5050/aziza-ahmed/is-evidence-all-it-will-take">Is evidence all it will take? </a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/hiv-and-global-plan-turning-tide-or-wash-out-for-women">HIV and the Global Plan: turning the tide or a wash-out for women?</a> </div> <div class="field-item even"> <a href="/5050/silvia-petretti/i-am-one-of-those-foreigners-living-with-hiv-in-uk">&quot;I am one of those foreigners&quot;: living with HIV in the UK</a> </div> <div class="field-item odd"> <a href="/5050/hajjarah-nagadya/aids-targets-fear-factor">AIDS targets: the fear factor </a> </div> <div class="field-item even"> <a href="/5050/sindi-putri/indonesia-facing-life-with-hiv">Indonesia: facing life with HIV </a> </div> <div class="field-item odd"> <a href="/5050/susan-paxton/positive-and-pregnant-in-asia-how-dare-you">Positive and pregnant in Asia - How dare you</a> </div> <div class="field-item even"> <a href="/5050/maria-de-bruyn/hiv-what-kind-of-evidence-counts">HIV: what kind of evidence counts ?</a> </div> <div class="field-item odd"> <a href="/5050/aziza-ahmed/is-evidence-all-it-will-take">Is evidence all it will take? </a> </div> </div> </div> </fieldset> <div class="field field-topics"> <div class="field-label">Topics:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> Civil society </div> <div class="field-item even"> International politics </div> <div class="field-item odd"> Science </div> </div> </div> <div class="field field-rights"> <div class="field-label">Rights:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> CC by NC 4.0 </div> </div> </div> 50.50 50.50 Civil society International politics Science 50.50 Women Human Rights Defenders 50.50 Women's Movement Building 50.50 AIDS, Gender and Human Rights 50.50 Contesting Patriarchy 50.50 Editor's Pick women's human rights women's health gender justice 50.50 newsletter Susana T. Fried Wed, 08 Jun 2016 08:41:23 +0000 Susana T. Fried 102760 at https://www.opendemocracy.net CSW: groundbreaking US support for sexual rights https://www.opendemocracy.net/5050/lyric-thompson/groundbreaking-policy-us-support-for-sexual-and-reproductive-health-and-rights <div class="field field-summary"> <div class="field-items"> <div class="field-item odd"> <p>With the 60th <a href="http://www.unwomen.org/en/csw/csw60-2016">UN Commission on the Status of Women</a> underway in New York, the decision by the US to support sexual and reproductive health and rights - at last - presents a real opportunity to move the agenda forward. </p> </div> </div> </div> <p>Here’s a little-known fact: the United States now has a policy on - and can support- sexual and reproductive health and rights. </p> <p>This policy is groundbreaking for the United States, which has in the past held up progress in international policy dialogues insisting on using the modified phrasing of “sexual and reproductive health and reproductive rights.”</p> <p>The rhetorical difference may seem simplistic, but this phrase has undermined global efforts to recognize that sexual rights exist and affirm state obligations to recognize and uphold them. This has far-reaching consequences for the health and rights of women, girls and sexual minorities. 47,000 girls and women die each year from unsafe abortions; 23,000 of those <a href="http://apps.who.int/iris/bitstream/10665/44529/1/9789241501118_eng.pdf&amp;ie=utf-8&amp;oe=utf-8&amp;gws_rd=cr&amp;ei=5avlVpqfHsavUfP7qJAI">take place</a> in the least developed countries. The most recent data available, from 2003, shows that 14% of all unsafe abortions in developing countries were among women younger than 20. For marginalized populations whose fundamental rights are not protected, such as LGBTI individuals, or those living in crisis or conflict settings, preventing pregnancy can be even more difficult, and one could imagine that these numbers would rise significantly. </p> <p>Last summer, with little warning and no fanfare, a US representative made the <a href="http://usun.state.gov/remarks/6831">announcement</a> during a meeting of the UN Women Executive Board: Drawing heavily from the Beijing Platform for Action’s 1995 outcome document, the policy reads: </p> <p><em>Sexual rights…</em><em>[</em><em>are</em><em>]</em><em> critical expression of our support for the rights and dignity of all individuals regardless of their sex, sexual orientation, or gender identity.</em><em>…</em><em>the United States understands the term ‘sexual rights’ to include all individuals’ ‘right to have control over and decide freely and responsibly on matters related to their sexuality, including sexual and reproductive health, free of coercion, discrimination, and violence.’ With further reference to paragraph 96 of the Beijing Platform of Action, we note that ‘equal relationships between [individuals] in matters of sexual relations and reproduction, including full respect for the integrity of the person, require mutual respect, consent and shared responsibility for sexual behavior and its consequences.’</em></p><p><em><img src="//opendemocracy.net/files/shutterstock_321596360.jpg" alt="" width="460 " /><br /></em></p> <p><em>United Nations, New York. Photo: Drop of light/Shutterstock </em></p><p>Unfortunately the United States stopped short of recognizing sexual rights as legally binding and enshrined in international human rights law, but advocates hope that even with this considerable caveat the US will have room to maneuver and show strong leadership in this area as the 60th <a href="http://www.unwomen.org/en/csw/csw60-2016">UN Commission on the Status of Women</a> gets underway in New York. It merits mentioning that the launch of the policy came too late for the US to be able to influence the language adopted in the Sustainable Development Goals (SDGs) - which still retain the problematic formulation of “sexual and reproductive health and reproductive rights.” Under Goal 3, the health goal, targets include reducing global maternal mortality, ending the AIDS epidemic and ensuring universal access to sexual and reproductive health-care services; the omission of rights here is a loss. Under Goal 5, the gender goal, language is so heavily caveated to avoid affirming sexual rights as to be almost laughable. Target 5.6 commits to: “Ensure universal access to sexual and reproductive health and reproductive rights as agreed in accordance with the Programme of Action of the International Conference on Population and Development and the Beijing Platform for Action and the outcome documents of their review conferences.” </p> <p>This not only prevented critical women’s rights protections from being articulated in the framework, but also undercut progress in affirming the rights of sexual minorities, a major priority for the Obama administration’s foreign policy goals. The Obama Administration is the first to name a Special Envoy for the Human Rights of LGBT Persons, currently Stephen Berry, although as one activist recently said, “He’s the loneliest man in government,” alluding to the fact that Mr. Berry has no staff or budget support to speak of. That said, Mr. Berry has been aggressively pursuing all possible avenues to <a href="http://time.com/4108973/vatican-meets-with-u-s-state-departments-gay-and-lesbian-envoy/">raise LGBT issues as a foreign policy priority</a> since setting foot in the office, traveling to 30 countries between April and November to meet with global leaders in politics, business, and religion. During those discussions, Berry discussed violence and discrimination, and tried to find common ground with the influential Holy See, often problematic for sexual rights at the UN and otherwise. Berry also has a direct line to the Secretary of State, which is not only important institutionally for elevating the issues his post represents, but sets a strong precedent for the future.</p> <p>Alas, while the timing of American acknowledgement of sexual rights could have been better - by decades, if not by months - this year’s meeting of the UN Commission on the Status of Women presents the first major moment for the United States to put this long-awaited policy to good use. Two opportunities are on the horizon: the negotiations of the annual outcome document, known as the Agreed Conclusions, and a resolution on HIV that will be tabled by Botswana, on behalf of the Southern African Development Community.</p> <p>“We expect that the CSW this year will put governments’ political will to the test,” says Shannon Kowalski of the International Women’s Health Coalition, a leading advocate at the UN for women’s health and rights. “The CSW is focused on the means of implementation for the Sustainable Development Goals. It is the first time governments have to elaborate on how they will meet the gender-related goals and targets: funding, promoting an enabling policy and legal environment, capacity building, data collection and measurement, and support for feminist organizations in the implementation of and accountability for the goals."</p> <p>To date, governments have mostly been negotiating the substance of the issues that made it into the framework, not committing dollars and cents to achieve them. The Women’s Rights Caucus, which lobbied the UN for inclusion of various women’s rights issues in the SDGs, <a href="https://iwhc.org/press-release/womens-groups-alarmed-by-financing-for-development-plans/">decried the outcomes of last year’s Financing for Development conference</a> where <a href="https://iwhc.org/2015/07/financing-discussions-on-global-development-miss-the-mark/">advocates had hoped</a> that real commitments to fund women’s rights and sustainable development would be made. As the Association for Women in Development <a href="http://www.awid.org/priority-areas/resourcing-womens-rights">has documented for a decade</a>, feminist and women’s organizations are consistently underfunded to do work that is actually essential to achievement of the very goals the international community has agreed. Without funding to achieve goals and targets stated in the SDGs, as well as funding to organizations to implement goals and hold government officials accountable, we will likely fall short of achieving these worthwhile targets and will continue to fall short of true equality for women and girls.</p> <p>The other opportunity for progress is the HIV resolution, which has come up again after a near meltdown two years ago over language that demonized sex work and undermined sexual rights. This year, critically, the resolution is timed ahead of an upcoming <a href="http://www.unaids.org/en/resources/documents/2016/A-Res-70-228">High Level Meeting on Ending AIDS</a> this June. As such, the CSW resolution represents an opportunity to test the waters for progressive language that can be echoed and built upon this summer in New York. The US has a role to play here, as it now has its sexual rights policy in hand and can be looked to as an ally on important provisions such as comprehensive sexuality education and the particular needs of women and adolescent girls living with HIV. Girls and young women account for 71 percent of new HIV infections among adolescents in Sub-Saharan Africa. Each year, 380,000 girls 15-24 are infected with HIV. </p> <p>“In Sub-Saharan Africa and in Southern Africa in particular, adolescent girls are disproportionately affected by the epidemic and have been for the last 15 years, but we have failed them,” says the Dr. Katherine Fritz, a leading HIV expert at the International Center for Research on Women. Dr. Fritz is alluding to shifts in the global HIV response in recent years towards a medicalized approach to HIV prevention. “These efforts have been completely ineffective in empowering adolescent girls and young women with what they need in addition to prevention technology such as microbicides: agency and control over their sexual lives.” </p> <p>“The HIV epidemic spawned such an incredible movement of human rights and feminist activists who advocated for the social changes required to ending the epidemic. The pivot to a predominately biomedical paradigm has resulted in an abandonment of funding for these groups and initiatives. Yet need the grassroots groups now more than ever.”</p> <p>So it seems that for both of the major policy opportunities ahead at CSW - the Agreed Conclusions and the HIV resolution - there is at once a strong need for more progressive, rights based language at a time when the grassroots groups who have been pushing for it are struggling to survive. It is hoped that the US the world’s leading donor, now having a sexual rights policy in hand, will be able to move the agenda forward. </p> <p>“We are looking for the US to lead on SRHR now that they have this policy,” says Kowalski. “It’s important.” </p><fieldset class="fieldgroup group-sideboxs"><legend>Sideboxes</legend><div class="field field-related-stories"> <div class="field-label">Related stories:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> <a href="/5050/lydia-alpizar/csw-vital-need-to-defend-women-human-rights-defenders">CSW: the vital need to defend women human rights defenders </a> </div> <div class="field-item even"> <a href="/5050/lyric-thompson/best-time-to-be-born-female-worst-to-be-feminist-advocate">The &quot;best time to be born female&quot;: the worst to be a feminist advocate</a> </div> <div class="field-item odd"> <a href="/5050/zohra-moosa/movements-money-and-social-change-how-to-advance-women%E2%80%99s-rights">Movements, money and social change: how to advance women’s rights</a> </div> <div class="field-item even"> <a href="/5050/angelika-arutyunova/womens-human-rights-watering-leaves-starving-roots">Women&#039;s human rights: Watering the leaves, starving the roots </a> </div> <div class="field-item odd"> <a href="/5050/anne-marie-goetz/madam-secretary-general">Madam Secretary-General?</a> </div> <div class="field-item even"> <a href="/5050/jennifer-allsopp/women-human-rights-defenders-activisms-front-line">Women human rights defenders: activism&#039;s front-line</a> </div> <div class="field-item odd"> <a href="/5050/susan-tolmay/csw-resisting-backlash-against-womens-human-rights">CSW: resisting the backlash against women&#039;s human rights </a> </div> <div class="field-item even"> <a href="/5050/maggie-murphy/traditional-values-vs-human-rights-at-un">&#039;Traditional values&#039; vs human rights at the UN</a> </div> <div class="field-item odd"> <a href="/5050/ruby-johnson-marisa-viana/our-bodies-as-battlegrounds">Our bodies as battlegrounds</a> </div> <div class="field-item even"> <a href="/5050/madeleine-rees/sexual-violence-access-to-justice-and-human-rights">Sexual violence, access to justice, and human rights</a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn-luisa-orza/welcome-to-our-house-women-living-with-hiv">Welcome to our house: women living with HIV</a> </div> <div class="field-item even"> <a href="/5050/cecilia-chung/hiv-call-for-solidarity-with-transgender-community">HIV: a call for solidarity with the transgender community </a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/hiv-witnessing-realisation-of-raw-human-rights">HIV: witnessing the realisation of raw human rights</a> </div> <div class="field-item even"> <a href="/5050/anne-marie-goetz-joanne-sandler/debating-5th-world-conference-on-women-defiance-or-defeatism">Debating a 5th World Conference on Women: defiance or defeatism ?</a> </div> <div class="field-item odd"> <a href="/5050/lyric-thompson/world%27s-girls-no-voice-no-rights">The world&#039;s girls: no voice, no rights</a> </div> <div class="field-item even"> <a href="/5050/lyric-thompson/girls-speaking-truth-to-power-at-un-global-2030-agenda">Girls speaking truth to power at the UN: the global 2030 Agenda </a> </div> <div class="field-item odd"> <a href="/5050/lyric-thompson/lives-of-endurance-sanitizing-crime-against-girls">Lives of endurance: sanitizing crime against girls</a> </div> <div class="field-item even"> <a href="/5050/margaret-owen/csw-will-there-be-agreed-conclusion-to-csw-this-year">CSW: will there be an Agreed Conclusion to the CSW this year? </a> </div> <div class="field-item odd"> <a href="/5050/massouda-jalal/csw-voices-from-afghanistan">CSW: Voices from Afghanistan </a> </div> <div class="field-item even"> <a href="/5050/zohra-moosa/csw-its-time-to-question-vaticans-power-at-un">CSW: it&#039;s time to question the Vatican&#039;s power at the UN</a> </div> <div class="field-item odd"> <a href="/5050/zohra-moosa/csw-on-balance-did-we-win">CSW on balance: did we win?</a> </div> <div class="field-item even"> <a href="/5050/andrea-cornwall/reclaiming-feminist-visions-of-empowerment">Reclaiming feminist visions of empowerment</a> </div> <div class="field-item odd"> <a href="/5050/anne-marie-goetz-joanne-sandler/women%27s-rights-have-no-country">Women&#039;s rights have no country</a> </div> <div class="field-item even"> <a href="/blog/jane_gabriel/csw_womens_empowerment_or_just_smart_economics">CSW: women&#039;s empowerment or just smart economics?</a> </div> <div class="field-item odd"> <a href="/valeria-costa-kostritsky/csw-gender-and-unsustainable-development">CSW: gender and unsustainable development </a> </div> </div> </div> </fieldset> <div class="field field-country"> <div class="field-label"> Country or region:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> United States </div> </div> </div> <div class="field field-topics"> <div class="field-label">Topics:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> Democracy and government </div> <div class="field-item even"> Equality </div> </div> </div> <div class="field field-rights"> <div class="field-label">Rights:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> CC by NC 4.0 </div> </div> </div> 50.50 50.50 United States Democracy and government Equality UN Commission on the Status of Women 50.50 AIDS, Gender and Human Rights 50.50 Gender Politics Religion 50.50 Contesting Patriarchy 50.50 newsletter bodily autonomy feminism gender gender justice women's health Lyric Thompson Mon, 14 Mar 2016 08:45:27 +0000 Lyric Thompson 100545 at https://www.opendemocracy.net The confinement of Eve: resolving Ebola, Zika and HIV with women’s bodies? https://www.opendemocracy.net/5050/susana-t-fried-alice-welbourn/confinement-of-eve-resolving-ebola-zika-and-hiv-with-women-s-bodi <div class="field field-summary"> <div class="field-items"> <div class="field-item odd"> <p>There are parallels between three major newsworthy viruses, Ebola, HIV and Zika, in relation to the global public health response and persistent and often toxic gender stereotypes. <a href="https://opendemocracy.net/democraciaabierta/susana-t-fried-alice-welbourn/el-confinamiento-de-eva-solucionar-el-bola-el-zika-y" target="_blank"><strong><em>Español</em></strong></a></p> </div> </div> </div> <p>The pattern is clear: as a new global health crisis erupts, women are placed at the centre of impact. In some cases, women are held responsible for preventing transmission.&nbsp; In other cases, women are expected to manage the crisis in the face of failed health systems. And if the crisis has anything to do with children, pregnancy or sex, women are held responsible for managing it. </p><p><img src="//opendemocracy.net/files/Zikaimage.jpeg" alt="" width="460" /></p> <p><em>Zika image. World Health Organisation </em></p><p>There are &nbsp;parallels between three major newsworthy viruses – Ebola, HIV and Zika -- in relation to the global public health response and persistent and often toxic gender stereotypes. In each case, women have been, at worst, objectified as “vessels and vectors” of disease, whose agency and will must be contained. At best, women are seen as responsible for containing and preventing disease transmission, and for caring for the ill members of their families and communities. Yet as over 30 years of experience in relation to HIV have shown us, such responses repeatedly fail to hit the target and repeatedly miss the <a href="http://developmentbookshop.com/aidngosandtherealitiesofwomenslives#.UdFfKJV5SEM">point</a><span>. <br /></span></p> <p>We have purposefully chosen the word ‘confinement’ in the title to reflect its traditional biblical reference to women’s labour and childbirth. In the dictionary, ‘to confine’ means to keep within boundaries, to restrict, to curb, to limit. Readers of the 50+ articles in this <a href="https://www.opendemocracy.net/5050/aids-2010-rights-here-right-now">openDemocracy</a> series over the past seven years will understand already how women’s rights have repeatedly been ignored, curbed or violated by global HIV policy guidelines, poverty, gender-based violence in many forms, including forced or coerced sterilization and lack of informed choice or privacy. So here we build on this wealth of analysis about the gender dimensions of HIV as a springboard for understanding the gender dynamics of Ebola and Zika. </p> <p>Both the Ebola and Zika viruses were identified many decades ago, and both have their origins in East Africa (the <a href="http://abcnews.go.com/Health/ebola-emerged-jungle-photos/story?id=24740453">DRC</a> in the case of Ebola and HIV, and <a href="http://www.who.int/emergencies/zika-virus/timeline/en/">Uganda</a> in the case of Zika). All three diseases (though we focus here primarily on Ebola and Zika) flourish in contexts of inequality.&nbsp; And in contexts of inequality, women and girls are often the most unequal.&nbsp; </p> <p>Ebola has severely affected Guinea, Sierra Leone and Liberia. Most people who contracted Ebola in Liberia were living either in rural communities or urban poverty, according to Tooni <a href="https://www.opendemocracy.net/5050/tooni-akanni/confronting-ebola-in-liberia-gendered-realities-0">Akanni</a>, and 75% of those who acquired it were women. The UN Development Programme (UNDP), drawing on <a href="http://apps.who.int/gho/data/view.ebola-sitrep.ebola-summary-age-sex-20150107?lang=en">World Health Organisation data</a>, reports that &nbsp;the situation in Sierre Leone and Guinea showed even greater gender disparity, “The number of EVD [Ebola virus disease] deaths is higher among women than men in the three epicentre countries. Of the total cases of EVD in West Africa, 50.8 percent have been women, as of 7 January 2015. The gender disparity is more pronounced in Guinea and Sierra Leone; it is relatively lower in Liberia.” </p> <p>The predominance of Ebola in women stems from women’s role as carers:&nbsp; women tend the sick as family members and healthcare workers, women prepare bodies for burial, and women in this part of West Africa are also travelling <a href="https://www.opendemocracy.net/5050/tooni-akanni/confronting-ebola-in-liberia-gendered-realities-0">traders</a>. This is exacerbated when health systems are in disarray. Women can also be exposed to Ebola (and Zika and HIV) sexually, and the likelihood of contracting the virus multiplies (as we have seen in the case of <a href="http://hivpreventiontoolkit.unaids.org/support_pages/concurrent_partnerships.aspx">HIV</a>) when they or their partner has multiple concurrent relationships. The recent outbreak of Ebola reflects a pattern that is similar to earlier outbreaks in other African countries. </p><p><img src="//cdn.opendemocracy.net/files/copyrightS.Gborie_WHO_12-recovered-ebola-patients.jpg" alt="" width="460 " /></p> <p><em>Recovered &nbsp;Ebola patients. Photo: S.Gborie, WHO </em></p><p>Toxic use of gender norms puts women additionally at risk. Tooni Akanni explains how in many communities across the globe, women are expected to “sacrifice for their families, even to the extent of putting their own lives at risk to prioritise care for ailing family members. Norms around women’s care work are not just commonly held but also strategically reinforced. There is anecdotal evidence in the <a href="http://www.who.int/csr/resources/publications/SexGenderInfectDis.pdf">WHO</a> study that men in Congo deliberately used the social expectation that women care for the sick to their favor, explaining that they avoided contacting Ebola, during the 2003 outbreak of the disease, by ‘making sure’ that women took care of the <a href="https://www.opendemocracy.net/5050/tooni-akanni/confronting-ebola-in-liberia-gendered-realities-0">sick</a>.” - Akanni concludes that Ebola produces inequitable morbidity, mortality and economic damage for women and that any effective response needs to take a gendered approach to understanding and responding to the respective roles of women – and of men – in societies where it strikes. Moreover, policy makers, governments and funders should invest in listening to, and acting upon, women’s experiences and perspectives: and their key role as “agents of change and social mobilisers” should be wholeheartedly embraced and supported, in order to produce an effective response to this extreme crisis. </p> <p>Meanwhile Amber <a href="https://www.opendemocracy.net/5050/amber-huff/ebola-exposing-failure-of-international-development">Huff</a> emphasizes how development processes have undermined social and healthcare systems: “recent growth has been largely inequitable, benefitting international investors but not resulting in equal improvements in public services and economic opportunities for everyday people.” She describes how these challenges are exacerbated by widespread international exploitation of the region’s natural resources and related conflict, which have, in turn, had a knock-on effect on wild animal populations, thereby opening up opportunities for spread of new diseases, including Ebola through bats. &nbsp;As Alicia Ely <a href="https://www.opendemocracy.net/openglobalrights-blog/alicia-ely-yamin/ebola-human-rights-and-poverty-%E2%80%93-making-links">Yamin</a> argues, the ravages of war produced a devastated healthcare system in Liberia and Sierra Leone, where women and children especially experienced marginalization and poverty. </p> <p>And as Yanoh Kay <a href="https://www.opendemocracy.net/openglobalrights/yanoh-kay-jalloh/losing-girls-post-ebola-in-sierra-leone">Jalloh</a> explains, while the immediate crisis is over, the effects of Ebola on girls continue, with any pregnant girls being banned from school in Sierra Leone. Whilst this ban was already in place, vulnerability of girls to unplanned pregnancy through rape or transactional sex to make ends meet increased because of Ebola. 33% of teenage girls already had unplanned pregnancies before Ebola and this figure has risen since. </p> <p>What of Zika? </p> <p><a href="http://globalhealth.thelancet.com/2016/02/16/what-solution-isnt-parallel-zika-and-hiv-viruses-women">Pregnancy</a>, especially pregnancy among girls and young women, is the lynchpin for Zika.&nbsp; While Zika has been identified in many countries around the world – from Uganda and Nigeria in Africa, to several countries in the South Pacific, to the current outbreak in Latin America and the Caribbean. It appears that Zika can be <a href="http://www.cdc.gov/zika/transmission/">sexually transmitted</a> (like Ebola and HIV), though most cases are directly transmitted by mosquito. </p> <p>&nbsp;The disease trajectories are different across the three viruses (HIV, Ebola and Zika).&nbsp; However, the <a href="http://sxpolitics.org/zika-and-abortion-rights-brazil-in-the-eye-of-the-storm/14029">toxic gender norms</a> that fuel the diseases and magnify their impact are common threads. And, like Ebola and HIV, Zika thrives in conditions of inequality and ruptured health systems, bringing additional burdens of care to women. </p> <p>There is a distinct gender specificity in the case of Zika:&nbsp; the link between Zika and microcephaly.&nbsp; In Brazil, a growing number of pregnant women who have contracted Zika in Brazil are giving birth to babies with microcephaly, a condition that disrupts full brain formation. At the same time, an Argentine doctors’ group has raised the possibility that that the cause of microcephaly may not be the Zika virus but the l<a href="http://www.sciencealert.com/argentinian-report-says-monsanto-linked-pesticide-is-to-blame-for-microcephaly-outbreak-not-zika">arvicide</a> used in Brazil to kill mosquitos. </p> <p>Whatever the cause of Zika, be it through mosquitoes themselves or the larvicide in the water, the specific and disproportionate impact on women runs through HIV, Ebola and Zika.&nbsp; In such a context, it is imperative that we focus on the bigger picture of disease prevention, treatment, care and support – a lesson learned over and over from HIV.&nbsp; Telling women not to get <a href="http://www.reuters.com/article/health-zika-brazil-pregnant-women-idUSKCN0VA1D1">pregnant</a> is not a viable answer. A comprehensive response to mosquito control is not straightforward, should involve and build on the expertise of all sections of a community, and necessitates a combination of locally appropriate and sustainable social and technical approaches.&nbsp; &nbsp;It should <em>not</em> just single out and target those who are already most vulnerable. This is all the more important in countries where contraception and abortion are both rigorously controlled by the State. </p> <p>Throughout these narratives we hear again and again, the refrain of poverty, inequity, marginalization, gender imbalances and top-down, kneejerk reactions designed to contain and control women and girls. </p><p><img src="//opendemocracy.net/files/copyrightSalamanderTrustGirlsinIndiainaSteppingStonesworkshop.jpg" alt="" width="460 " /></p> <p><em>HIV: girls in India during a Stepping Stones training workshop. Photo: Salamander Trust</em></p><p>As environmental scientists such as the late Rachel <a href="https://www.opendemocracy.net/ourkingdom/tom-butlerbowdon/five-politics-classics-every-activist-should-know-about">Carson</a>, and Wangari <a href="http://www.greenbeltmovement.org/wangari-maathai">Maathai</a>, advocates such as Arundathi <a href="http://www.weroy.org/arundhati.shtml">Roy</a> and Erin&nbsp; <a href="http://www.brockovich.com/">Brockovich</a>, investigative journalists such as ‘This changes everything’ author Naomi <a href="http://www.naomiklein.org/main">Klein</a> and economists such as Lourdes <a href="https://aap.cornell.edu/people/lourdes-beneria">Beneria</a>, Marilyn <a href="http://www.marilynwaring.com/">Waring</a> and Thomas <a href="http://www.parisschoolofeconomics.eu/en/piketty-thomas/">Picketty</a> have told us repeatedly over the past&nbsp; 50 years, growth-driven economies, combined with simple, top-down bio-tech, business-driven solutions to complex multi-issue challenges do not lead to social, economic or <a href="http://www.madre.org/uploads/misc/1417557518_Climate%20Justice%20Calls%20for%20Gender%20Justice%20-%20MADRE%20Concept%20Note.pdf">gender justice.</a> </p> <p>All these huge global public health issues have their connections with the bigger <a href="https://www.opendemocracy.net/neil-singh/seven-day-nhs-at-this-rate-we-re-headed-for-zero-day-nhs">picture</a>: with climate change, environmental degradation, and a glaringly simplistic – and misogynist – response. As Graham <a href="http://dx.doi.org/10.7448/IAS.18.1.20499">Brown</a> et al recently eloquently articulated in the context of HIV, a recognition of the need to shape an effective response to HIV in the framework of its place as part of a complex adaptive system is crucial. </p> <p>This response is now 3 decades overdue in the HIV response. </p> <p>Those seeking to mitigate the effects of Ebola and Zika would be wise to take note from our experiences. </p> <p>Eve, like nature, cannot – and will not – be contained.</p><p><strong>24 April, Update: <br /></strong></p><p>In this article, published on 29th February, we wrote about the Zika, Ebola and HIV viruses.&nbsp; We focused our analysis on the inadequacy of the response from the perspective of women’s human rights and, in particular, women’s sexual rights.&nbsp; We noted that the focus of the response to date, from currently affected countries as well as from the global health community, seemed to focus on <em>containing women’s sexuality</em> rather than providing greater access to sexual rights, such as mass distribution of modern contraception and easing access to abortion.&nbsp; This, despite the fact that such greater sexual rights would seem to be the appropriate public health response.&nbsp; Evidence shows that when women have access to modern forms of contraception, they use it, and, in doing so, avert unwanted <a href="http://who.int/mediacentre/factsheets/fs351/en/">pregnancies</a>.</p> <p>Yet, to date, no such massive distribution of contraception is yet taking place.&nbsp; Meanwhile, while women’s movements in Zika affected <a href="https://www.opensocietyfoundations.org/voices/brazil-can-fight-zika-virus-better-public-policy?utm_source=health&amp;utm_medium=email&amp;utm_content=IKsmIuUFTygbwrY5wIhPMp-XuARgcyg5ZIF2elW6zzI&amp;utm_campaign=health_041616">&nbsp;countries</a> have been advocating strongly for revising or repealing harsh laws criminalizing abortion, no such changes have yet taken place.&nbsp; Nor has a vaccine or medical treatment been developed, not for pregnant women nor children born with microcephaly.</p> <p>There has been at least one major advance: scientific evidence now seems to point definitively to Zika as the <a href="http://www.cdc.gov/media/releases/2016/s0413-zika-microcephaly.html">cause </a>&nbsp;of microcephaly. At the time we wrote the article, there were many theories swirling about the potential cause of microcephaly, including the possibility of chemical contamination.&nbsp; This now seems to have been effectively debunked.&nbsp; Meanwhile, the potential effects of Zika appear to have grown from microcephaly to other <a href="http://www.thelancet.com/pdfs/journals/lancet/PIIS0140-6736(16)00562-6.pdf">neurological</a> impacts on those who have contracted Zika. </p> <p>We applaud the greater understanding of the health impact of Zika.&nbsp; However, we continue to challenge Zika affected countries to review their laws on sexual and reproductive health and rights and, as a core part of their Zika response, focus on ensuring women’s rights to fully exercise and enjoy their right to health, including through accessible, affordable, acceptable and quality modern contraception and pregnancy termination.</p><p><strong><em>Read more articles in our long running dialogue</em> <a href="https://opendemocracy.net/5050/5050-aids-gender-and-human-rights">AIDS, Gender and Human Rights </a></strong></p><hr size="1" /><fieldset class="fieldgroup group-sideboxs"><legend>Sideboxes</legend><div class="field field-related-stories"> <div class="field-label">Related stories:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> <a href="/5050/alice-welbourn-luisa-orza/welcome-to-our-house-women-living-with-hiv">Welcome to our house: women living with HIV</a> </div> <div class="field-item even"> <a href="/5050/tooni-akanni/confronting-ebola-in-liberia-gendered-realities-0">Confronting Ebola in Liberia: the gendered realities</a> </div> <div class="field-item odd"> <a href="/5050/amber-huff/ebola-exposing-failure-of-international-development">Ebola: exposing the failure of international development</a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/end-to-aids-not-through-medication-alone">An end to AIDS?: Not through medication alone</a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/hiv-violations-or-investments-in-women%E2%80%99s-rights"> HIV: Violations or investments in women’s rights? </a> </div> <div class="field-item even"> <a href="/5050/baby-rivona-oldri-mukuan/global-mechanism-regional-solution-ending-forced-sterilisation">Global mechanism, regional solution: ending forced sterilisation </a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/women-and-post-2015-agenda-are-you-on-board-ark">Women and the post-2015 agenda: are you on board the ark?</a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/aids-2014-conference-stepping-up-pace-and-still-on-wrong-path">AIDS 2014 Conference: stepping up the pace and still on the wrong path </a> </div> </div> </div> </fieldset> <div class="field field-topics"> <div class="field-label">Topics:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> Equality </div> <div class="field-item even"> Science </div> </div> </div> <div class="field field-rights"> <div class="field-label">Rights:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> CC by NC 4.0 </div> </div> </div> 50.50 50.50 Equality Science 50.50 Women's Movement Building 50.50 AIDS, Gender and Human Rights 50.50 Structures of Sexism women's human rights women's health violence against women gendered poverty gender justice gender bodily autonomy 50.50 newsletter Alice Welbourn Susana T. Fried Mon, 29 Feb 2016 09:19:54 +0000 Susana T. Fried and Alice Welbourn 100141 at https://www.opendemocracy.net Welcome to our house: women living with HIV https://www.opendemocracy.net/5050/alice-welbourn-luisa-orza/welcome-to-our-house-women-living-with-hiv <div class="field field-summary"> <div class="field-items"> <div class="field-item odd"> <p>The largest survey on women living with HIV, commissioned by the World Health Organisation, has revealed the stark truth about the gender-based violence and mental health challenges that positive women face. </p> </div> </div> </div> <p>The results of the largest ever international survey of women living with HIV were formally published last week and they do not make a comfortable read. The gender-based <a href="http://www.jiasociety.org/index.php/jias/article/view/20285/pdf_1">violence</a> (GBV) and mental <a href="http://www.jiasociety.org/index.php/jias/article/view/20289/pdf_1">health</a> issues faced by women living with HIV after their diagnosis are both very high and have a huge impact on their lives. This includes GBV in healthcare settings. Yet as the findings reveal, neither of these issues is being addressed by global policy makers. </p> <p>The survey, which formed part of a global “values and preferences” <a href="http://salamandertrust.net/resources/BuildingASafeHouseOnFirmGroundFINALreport190115.pdf">consultation</a>, is not the first of its kind, but is the largest, in terms of numbers and its international scale. Conducted in 2014, it was commissioned by WHO as they begin the process of updating their 2006 <a href="http://whqlibdoc.who.int/publications/2006/924159425X_eng.pdf">Guidelines</a> on the SRH of women living with HIV. Furthermore, it represents a “first” in terms of using&nbsp; participatory methods in WHO guideline <a href="http://apps.who.int/iris/bitstream/10665/75146/1/9789241548441_eng.pdf?ua=1">development</a>.&nbsp; </p> <p>The consultation, comprising an on-line survey and a series of focus group discussions, was led by Salamander <a href="http://salamandertrust.net/index.php/Projects/SRH&amp;HR_Survey_for_women_with_HIV/">Trust</a>, with <a href="http://athenanetwork.org/">ATHENA</a>, <a href="http://www.gnpplus.net/">GNP+,</a> <a href="http://iamicw.org/">ICW</a>, and the <a href="http://transgenderlawcenter.org/">Transgender</a> Law Center, among others. A global reference group, made up of 14 women living with HIV from around the world and representing women from different backgrounds and contexts, conducted a pre-consultation to elicit priority themes to include in the survey, and helped roll out the survey among their networks and communities. Nearly 1,000 women living with HIV from 94 countries engaged in the survey, including sizeable numbers of women with experience of drug use, sex work, homelessness, prison or detention, rape or sexual violence, migration, and conflict, transgender and lesbian, bisexual and other women who have sex with women and heterosexual women. </p> <p><em>“Before HIV, I was victim of different types of violence (physical, psychological, financial) besides the impact my partner’s alcoholism and machismo; this lead me to get several STIs, including HIV." (El Salvador).</em> </p> <p>The survey contained one introductory mandatory section and eight optional sections, covering different themes. Gender-based violence (GBV) was reported in all sections. Eighty-nine percent of 480 respondents to the optional section on gender-based violence (GBV) (58% of all survey respondents) reported having experienced or feared violence, either before, since and/or because of their HIV diagnosis. GBV reporting was higher after HIV diagnosis&nbsp; from their intimate partner, or from family or neighbours, from the wider community, from healthcare settings and/or from police or prison staff. Whilst we have known for some time that violence against women is a factor that increases women’s vulnerability to HIV by <a href="http://www.who.int/reproductivehealth/publications/violence/VAW_infographic.pdf">1.5</a>, these results clearly confirm GBV in many contexts as a consequence of HIV also, with increased intimate partner violence (IPV) rates too. </p> <p><em>“When I was newly diagnosed and had lost about 40Kg my neighbours and members of my church choir started avoiding me and in fact disallowed their children to come to my home and my son to enter theirs. It was such a painful experience for me." (Nigeria).</em> </p> <p>The respondents described a complex and iterative relationship between GBV and HIV occurring throughout their lives, including breaches of confidentiality and lack of sexual and reproductive health choice in healthcare settings, including forced or coerced treatments, human rights abuses, moralistic and judgmental attitudes (including towards women who identify as transgender, lesbian, bisexual, drug using and/or doing sex work), and fear of losing child custody. </p> <p><em>“The moment a woman identifies herself as living positively with HIV, they are neglected especially during delivery hence increased number of children born with HIV because women prefer to keep it a secret and be treated like the rest. Others have avoided giving birth from health centers . . . because of negligence in those hospitals. They prefer traditional birth attendants." (Uganda).</em> </p> <p>Only 11% of all respondents to this section reported never having experienced GBV in any form. Respondents recommended that healthcare practitioners and policymakers address stigma and discrimination, training, awareness-raising, and human rights abuses in healthcare settings as a matter of urgency. The report authors note that gender-based violence is not something that is currently addressed meaningfully in any global policy that concerns issues relating to women living with HIV. Notably, this critique applies also to the just released&nbsp; “2015 Progress Report on the Global Plan towards the Elimination of new HIV Infections among Children and Keeping their Mothers <a href="http://www.unaids.org/sites/default/files/media_asset/JC2774_2015ProgressReport_GlobalPlan_en.pdf">Alive</a>”. In this report, it is very dispiriting&nbsp; to see that violence is still not mentioned, despite <a href="http://www.rhm-elsevier.com/article/S0968-8080%2812%2939638-9/fulltext">others</a> having criticized the Global Plan previously on that count and despite the report from the survey we are discussing here being widely available for the past 11 months. </p> <p>The results regarding mental health were equally stark. </p> <p><em>‘‘I have lost friends, and have a hugely restricted social circle from before I was diagnosed with HIV.’’ (UK).</em> </p> <p>82% of our respondents reported symptoms of depression while 78% reported rejection. These results compared to 1/5 of respondents reporting mental health problems before diagnosis.&nbsp; </p> <p><em>“Family members are blaming me for the death of my husband,I fear to disclose my status to even my mother because she will isolate me from my siblings and use me as an example in every case.” (Uganda).</em> </p> <p>The respondents discussed how HIV-related stigma and mental health issues presented them with challenges both in engaging in and asserting agency and control within sexual/intimate relationships. They described both shame and fear as barriers: </p> <p><em>“I have stopped engaging in sexual relationships since being diagnosed. I feel embarrassed and will never disclose to anyone.” (Nigeria). <br /></em></p> <p><em>“The issues around dating and having to talk to your lover or partner about your status at times brings anxiety, fear and depression of being rejected.” (Kenya). <br /></em></p> <p>Some women felt more vulnerable to unsafe sex as a result of their low self-esteem: </p> <p><em>“It makes me less assertive and I sometimes give permission to my partner to take advantage of me by having sex when I would rather not.’’ (Nigeria).</em></p> <p><em>&nbsp;<img src="//cdn.opendemocracy.net/files/BuildingASafeHouse SalamanderImageJan2015(1).jpg" alt="" width="400" /></em></p> <p>The original survey report presented its findings using the metaphor of a house to show how all the issues addressed by the respondents are inter-connected. The image shows how SAFETY is placed as the deepest foundation. And mental health is one of the key roof sections. All these sections of the house are integrally connected in a woman’s life. In order to achieve their sexual and reproductive health and human rights, all these different aspects of a woman’s life need to be considered. As the report explains, there is both intrinsic and instrumental sense in seeking to achieve these rights: both in a woman’s own right, and - just like putting your own oxygen mask on first in an aeroplane - in order for her also then to be better placed to care for the children, partners and other community members for whom women around the world so often seek to care. </p><p>To separate all the different sections of a woman’s life into silos, whilst it may seem more convenient for policy makers and health-service or other providers, means that one rapidly loses sight of the bigger picture: of how the many, complex and inter-related challenges facing women living with HIV around the world connect with one another.&nbsp; As the lack of any mention of GBV in the Global Plan report above shows, there appears within the UN to be a curious cognitive <a href="https://en.wikipedia.org/wiki/Cognitive_dissonance">dissonance</a> in its global policies around women in relation to their own happiness, health and safety and that of their children especially. In relation to HIV and children, there is some disconcerting mental slippage that assumes that the health and well-being of a child may somehow be completely unconnected to the happiness, health and safety of her mother; or that somehow the mother may indeed herself be carelessly to blame for the child’s problems. </p><p>Meanwhile, for those women with HIV who are not mothers or partners, there is instead a distinct paucity of health or any other services across the lifecycle. It therefore often appears that issues facing women with HIV are only to be addressed if their own HIV could potentially spread to others around them. Either way a woman with HIV gets short shrift. </p><p><img src="//cdn.opendemocracy.net/files/Geneva.jpg" alt="" width="400" /></p> <p><em>WHO Guidelines Development Group meeting in Geneva</em></p><p>At a meeting of the report developers with WHO in January 2015, the survey report was first presented to members of the Guidelines Development Group by several of the 14 women living with HIV from around the world who shaped this survey from its outset. The women shared their own stories to illustrate the personal dimensions of the report’s findings. This Guidelines Development Group will now take forward the process of updating the WHO Guidelines. They have listened to and engaged with the findings of the consultation; have heard from the mouths of women living with HIV their experiences, their realities and priorities in the areas of life course transitions; of the desire for positive sexuality; of experiences of violence and diversity; and of mental health matters. They have put themselves, for a moment, into the shoes of women living with HIV, and have walked around in them; and have imagined entering the loving warmth and security of our “house built on firm ground.” </p> <p><em>“This has been the best part of all the guideline writing process. I was anxious about the whole process because it is usually quite a task, but after listening to your presentations I am not anxious at all anymore.”</em> (Member of the Guidelines Development Group, WHO). </p> <p>With two articles about the gender-based <a href="http://www.jiasociety.org/index.php/jias/article/view/20285/pdf_1">violence</a> and mental <a href="http://www.jiasociety.org/index.php/jias/article/view/20289/pdf_1">health</a> challenges faced by women living with HIV published last week in a leading <a href="http://www.jiasociety.org/index.php/jias/about/editorialPolicies#focusAndScope">scientific</a> journal, we hope that the global community of policy-makers, academics and clinicians will incorporate these issues into their work as a matter of urgency. We also look forward with great anticipation to the updated World Health Organisation Guidelines. </p><p><em>This article is published in our annual series</em> <strong><a href="https://opendemocracy.net/5050/16-days-activism-against-gender-based-violence">16 Days: Activism against Gender-Based Violence </a></strong></p><p><em>Read more articles on our dedicated platform</em> <strong><a href="https://opendemocracy.net/5050/5050-aids-gender-and-human-rights">AIDS, Gender and Human Rights</a></strong>, <em>edited by Alice Welbourn&nbsp; </em></p><fieldset class="fieldgroup group-sideboxs"><legend>Sideboxes</legend><div class="field field-related-stories"> <div class="field-label">Related stories:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> <a href="/5050/silvia-petretti/hiv-both-cause-and-consequence-of-violence-against-women">HIV: both the cause and the consequence of violence against women</a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/hiv-treatment-no-experts-saviours-or-victims-just-women">No experts, saviours or victims: women living with HIV</a> </div> <div class="field-item odd"> <a href="/5050/silvia-petretti/i-am-one-of-those-foreigners-living-with-hiv-in-uk">&quot;I am one of those foreigners&quot;: living with HIV in the UK</a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/hiv-of-bombs-and-banks-and-transformation">HIV: of bombs and banks and transformation...</a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/hiv-free-generation-human-sciences-vs-plumbing">An HIV-free generation: human sciences vs plumbing </a> </div> <div class="field-item even"> <a href="/5050/susan-paxton/positive-and-pregnant-in-asia-how-dare-you">Positive and pregnant in Asia - How dare you</a> </div> <div class="field-item odd"> <a href="/5050/ida-susser-zena-stein/bioinsecurity-and-hivaids">Bio-insecurity and HIV/AIDS </a> </div> <div class="field-item even"> <a href="/5050/maria-de-bruyn/hiv-what-kind-of-evidence-counts">HIV: what kind of evidence counts ?</a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/absence-of-evidence-does-not-mean-evidence-of-absence">Absence of evidence does not mean evidence of absence</a> </div> <div class="field-item even"> <a href="/5050/nell-osborne/violence-gender-and-hiv-in-uk">Violence, gender and HIV in the UK </a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/positive-women-human-rights-defenders">Positive women human rights defenders</a> </div> <div class="field-item even"> <a href="/5050/martha-tholanah/hiv-disclosure-changing-ourselves-changing-others">HIV disclosure: changing ourselves, changing others </a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/hiv-violations-or-investments-in-women%E2%80%99s-rights"> HIV: Violations or investments in women’s rights? </a> </div> <div class="field-item even"> <a href="/5050/cecilia-chung/hiv-call-for-solidarity-with-transgender-community">HIV: a call for solidarity with the transgender community </a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn-louise-binder/compulsion-versus-compassion-hiv-treatment-for-women-and-children">Compulsion versus compassion: HIV treatment for women and children </a> </div> <div class="field-item even"> <a href="/5050/ida-susser/microbicide-success-feminism-is-essential-to-good-science">A microbicide success: feminism is essential to good science</a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/end-to-aids-not-through-medication-alone">An end to AIDS?: Not through medication alone</a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/hiv-witnessing-realisation-of-raw-human-rights">HIV: witnessing the realisation of raw human rights</a> </div> <div class="field-item odd"> <a href="/alice-welbourn/hiv-and-aids-language-and-blame-game">HIV and AIDS: language and the blame game</a> </div> </div> </div> </fieldset> <div class="field field-topics"> <div class="field-label">Topics:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> Civil society </div> </div> </div> <div class="field field-rights"> <div class="field-label">Rights:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> CC by NC 4.0 </div> </div> </div> 50.50 50.50 Civil society Continuum of Violence 16 Days: activism against gender based violence 50.50 Women's Movement Building 50.50 AIDS, Gender and Human Rights 50.50 Contesting Patriarchy 50.50 Editor's Pick women's human rights women's health violence against women Sexual violence gender justice bodily autonomy Luisa Orza Alice Welbourn Mon, 07 Dec 2015 09:03:33 +0000 Alice Welbourn and Luisa Orza 98217 at https://www.opendemocracy.net Amnesty International: should sex work be decriminalized? https://www.opendemocracy.net/5050/susana-t-fried-sonia-correa/amnesty-international-should-sex-work-be-decriminalized <div class="field field-summary"> <div class="field-items"> <div class="field-item odd"> <p>As Amnesty International meets to consider a resolution that calls for the decriminalization of sex work, those in favour argue it would be a step forward for the rights of sex workers.</p> </div> </div> </div> <p>At Amnesty International's 32nd International Council Meeting which takes place in Dublin from 7-11 August, members will consider a <a href="https://www.google.co.uk/search?q=http://tasmaniantimes.com/images/uploads/Circular_18_Draft_Policy_on_Sex_Work_final.pdf&amp;ie=utf-8&amp;oe=utf-8&amp;gws_rd=cr&amp;ei=B2fDVZKvOtGy7Qbf4KuACQ">resolution</a> calling for an explicit organizational commitment to respect, protect and fulfill the human rights of sex workers. The resolution “requests the International Board to adopt a policy that seeks attainment of the highest possible protection of the human rights of sex workers, through measures that include the decriminalization of sex work.” This echoes the preponderance of evidence that sex workers’ human rights are best protected when sex work is not illegal. We applaud AI’s action. </p> <p>Amnesty’s resolution draws upon two years of research and internal consultation with Amnesty International worldwide sections and their members. In passing this resolution, Amnesty would join a growing number of respected development and human rights institutions such as the UN Development Programme, the World Bank and Human Rights Watch in calling for the decriminalization of sex work (noting the important distinction between sex work and trafficking), a position further supported by individuals including former UN Special Rapporteur on the right to the highest attainable standard of health, Anand Grover. </p> <p>Unlike most AI resolutions to its International Board, this one has become a large, public and contentious issue, with the resolution receiving press coverage in a number of major newspapers including the <a href="http://www.nytimes.com/2015/08/01/world/europe/amnesty-international-weighs-decriminalization-of-prostitution.html">New York Times</a> in the US and the <a href="http://www.theguardian.com/global-development/2015/aug/04/amnesty-must-stand-firm-decriminalising-sex-work">Guardian</a> in the UK. </p> <p>We speak to this issue from experience and evidence.&nbsp;Having many years of experience between us of work on sexuality-related human rights, we are seized by a sense of urgency on this issue.&nbsp;A <a href="http://www.undp.org/content/dam/undp/library/hivaids/English/HIV-2012-SexWorkAndLaw.pdf">report</a> on sex work and the law in Asia and the Pacific, compiled by the UNAIDS joint programme on HIV/AIDS with the UNDP and UNFP, documents how adult sex workers are more likely to engage in safer sex practices when sex work is decriminalized.&nbsp; At the same time, the report's authors found no evidence that decriminalization increases the prevalence of sex work in the region -&nbsp; an erroneous assertion often made by those who oppose decriminalization such as Equality Now and the Coalition Against Trafficking in Women. </p> <p>In Brazil, for example, sex work was declared to be an <a href="http://prostitution.procon.org/sourcefiles/BrazilLaborAndEmploymentMinistryPrimerOnSexProfessional.pdf">official occupation</a> in 2003, and this entitled sex workers to social security and other work benefits. Sex work itself is not illegal in Brazil, although many aspects of the business of sex work remain criminalized. While stigma and discrimination continue to exist, sex workers have focused on worker organizing and community-based empowerment initiatives such as the <a href="http://www.akissforgabriela.com/?page_id=2742">Brazil Network of Prostitutes</a>. The network has thirty member organizations, collectively contesting police violence and advocating for the rights of all sex workers - female, male and travesti. One of many initiatives, the <a href="https://books.google.co.uk/books?id=f60h4OyZu_QC&amp;pg=PA55&amp;lpg=PA55&amp;dq=Previna+project++brazil&amp;source=bl&amp;ots=Wl8YIA0fTb&amp;sig=zkuj5ANqs06q9YSxS4PuPwdQtzs&amp;hl=en&amp;sa=X&amp;ved=0CDQQ6AEwA2oVChMI04uho9eUxwIVzxfbCh1RsAEp#v=onepage&amp;q=Previna%20project%20%20brazi">Previna</a> project, was based on a peer education approach and supported self-organizing among sex workers - as reported in the World Bank report <a href="http://www.worldbank.org/content/dam/Worldbank/document/GlobalHIVEpidemicsAmongSexWorkers.pdf">The Global HIV Epidemics among Sex Workers</a>. The report’s case study in <a href="http://www.worldbank.org/content/dam/Worldbank/document/GlobalHIVEpidemicsAmongSexWorkers.pdf">Brazil</a> further confirms that, “successful interventions among sex workers in Brazil have been those that adopt a rights based, community building approach and actions to decrease sex work related stigma”. </p><p><img src="//opendemocracy.net/files/sexworkersbrazil(1).jpg" alt="" /></p> <p><em>Sex workers protest against police crackdowns. Credit: Daspu's facebook </em></p><p>In addition to the World Bank, UNAIDS, UNDP and UNFPA have <a href="http://www.undp.org/content/dam/undp/library/hivaids/English/HIV-2012-SexWorkAndLaw.pdf">documented</a> the efficacy of human rights based approaches in response to sex workers’ extreme vulnerability to violence – often enacted by the police and other state actors.&nbsp;All of these reports focus on adult sex workers. According to international law, people below the age of 18 can be considered as victims of trafficking. However, <a href="http://futuresgroup.com/files/publications/Synthesis_of_Research_on_Prevention_of_Sexual_Transmission_of_HIV_in_SA.pdf">younger sex workers</a> are also target of violence, much of which goes unreported. In terms of health, adult sex workers are amongst the most vulnerable groups <a href="http://www.worldbank.org/content/dam/Worldbank/document/GlobalHIVEpidemicsAmongSexWorkers.pdf">contracting and living with HIV</a>, yet services for them have remained woefully inadequate - in part because sex work is criminalized in so many places.&nbsp; </p> <p>The disproportionate (and at times extreme) vulnerability of sex workers to HIV is documented in the World Bank’s <a href="http://www.worldbank.org/content/dam/Worldbank/document/GlobalHIVEpidemicsAmongSexWorkers.pdf">report</a>, which found that “across regions, HIV prevalence among female sex workers was 13.5 times the overall HIV prevalence among the general population of women 15–49 years old”. In such contexts of marginalisation, community empowerment-based approaches play a critical role in promoting and protecting the health and rights of sex workers. However, such expansion of community empowerment is severely limited when sex work is criminalized. Criminalization has dramatic negative impact on testing and treatment for HIV because people are understandably less likely to be screened, and to access services, when they are potentially facing arrest or violence as a direct consequence. </p> <p>The report, <a href="http://www.undp.org/content/dam/undp/library/HIV-AIDS/Governance%20of%20HIV%20Responses/Commissions%20report%20final-EN.pdf">Risks, Rights and Health: the report of the Global Commission on HIV and the Law</a>, together with the World Bank report on countries such as <a href="http://www.worldbank.org/content/dam/Worldbank/document/GlobalHIVEpidemicsAmongSexWorkers.pdf">Ukraine and Kenya</a>, and the Human Rights Watch report on <a href="https://www.hrw.org/news/2010/12/01/violence-against-cambodias-sex-workers">Cambodia</a>, all document the ways in which the criminalization of sex work hampers community cohesion and fosters discrimination. Stigma and discrimination in turn interferes with and <a href="http://www.undp.org/content/dam/undp/library/hivaids/English/HIV-2012-SexWorkAndLaw.pdf">undermines</a> sex workers’ right to health and public health interventions, in particular HIV prevention. It serves as a contributing factor in the denial of access to justice, police protection and legal due process, as well as the exclusion of sex workers from social protections such as health services, housing, education, and immigration status. </p> <p>In calling on States to protect and empower the most marginalized in society, there is a&nbsp; parallel to be drawn with the issue of same-sex sexuality. Up until 1991, Amnesty International had failed to include people imprisoned on the basis of their sexual orientation as “prisoners of conscience” on whose behalf AI campaigns. This changed with a <a href="http://smart.whad.org/archives-of-the-international-secretariat-of-amnesty-internati-index-85">resolution</a> to the International Board in 1991. With that move, AI joined the forefront of advocacy rights related to sexual orientation, including by calling for the decriminalization of homosexuality. And indeed, evidence continues to show that lesbian, gay, bisexual and transgender people face violence perpetrated with impunity, especially in contexts in which homosexuality is criminalized. Much the same can be said for sex workers. </p> <p>In adopting this evidence-informed resolution, Amnesty would help make a tangible difference in the lives of some of the most marginalized people in countries and communities around the world. It is an important step forward.</p> <p>&nbsp;</p><fieldset class="fieldgroup group-sideboxs"><legend>Sideboxes</legend><div class="field field-related-stories"> <div class="field-label">Related stories:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> <a href="/5050/aziza-ahmed-jm-kirby/preventing-hiv-decriminalisation-of-sex-work">Preventing HIV: the decriminalisation of sex work</a> </div> <div class="field-item even"> <a href="/5050/geetanjali-misra/feminist-defence-of-sex-workers%E2%80%99-rights">A feminist defence of sex workers’ rights</a> </div> <div class="field-item odd"> <a href="/5050/rahila-gupta/issues-that-divide-building-diverse-feminist-movement">The issues that divide: building a diverse feminist movement</a> </div> <div class="field-item even"> <a href="/5050/heather-mcrobie/laurie-penny-on-unspeakable-things">Laurie Penny on Unspeakable Things </a> </div> <div class="field-item odd"> <a href="/5050/lucy-dixon/prostitution-and-drug-misuse-breaking-vicious-circle">Prostitution and drug misuse: breaking the vicious circle </a> </div> <div class="field-item even"> <a href="/5050/valeria-costa-kostritsky/french-debate-on-prostitution">A French debate on prostitution</a> </div> <div class="field-item odd"> <a href="/5050/rahila-gupta/modern-slavery-bill-does-british-government-really-care">The Modern Slavery Bill: does the British government really care?</a> </div> <div class="field-item even"> <a href="/5050/nada-mustafa-ali/hope-pain-and-patience-hiv-and-sex-workers">Hope, pain and patience: HIV and sex workers</a> </div> <div class="field-item odd"> <a href="/5050/aziza-ahmed/focus-on-sex-workers">A focus on sex workers </a> </div> <div class="field-item even"> <a href="/5050/elizabeth-grant/choir-of-lost-voices-murder-of-loretta-saunders-and-canadas-missing-women">A choir of lost voices: the murder of Loretta Saunders and Canada&#039;s missing women</a> </div> </div> </div> </fieldset> <div class="field field-rights"> <div class="field-label">Rights:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> CC by NC 4.0 </div> </div> </div> 50.50 50.50 50.50 AIDS, Gender and Human Rights 50.50 Voices for Change women's health violence against women bodily autonomy 50.50 newsletter Sonia Correa Susana T. Fried Fri, 07 Aug 2015 07:45:39 +0000 Susana T. Fried and Sonia Correa 95076 at https://www.opendemocracy.net Nobody Left Behind? The lives of indigenous women with HIV https://www.opendemocracy.net/5050/marama-pala/nobody-left-behind-lives-of-indigenous-women-with-hiv <div class="field field-summary"> <div class="field-items"> <div class="field-item odd"> <p>HIV rates are driven by widespread global inequalities. What will it take to put the human rights of indigenous women living with HIV on the global map?</p> </div> </div> </div> <p><span>At the Vancouver International AIDS </span><a href="http://www.ias2015.org/">Conference</a><span> last month, some of the sessions echoed 2014’s </span><a href="http://www.ias2014.org/">Melbourne</a><span> International AIDS Conference by beginning with a powerful acknowledgment of the ancestral owners of the land on which the event was being held and their current descendants. In Vancouver these are the Coast Salish People, Squamish, Musqueam and Tsleil-Waututh, to whom their Northwestern Pacific </span><a href="http://www.squamish.net/about-us/our-land/">territory</a><span> is better known as part of ‘Turtle </span><a href="https://en.wikipedia.org/wiki/Turtle_Island_%28North_America%29">Island’</a><span>.</span></p> <p>What is rarely recognised however, let alone acknowledged, are the enormous rights violations that these and all indigenous peoples – especially women - face around the world in relation to our health, our well-being and HIV. At the Melbourne AIDS conference, where the official conference <a href="http://www.aids2014.org/Default.aspx?pageId=734">Declaration</a> was entitled “Nobody Left Behind”, we had, for the fourth time, an Indigenous People’s Zone where we sought to address some of the issues we face. </p> <p>No such civil society zone existed at the more science focused Vancouver AIDS conference last month. Nonetheless we sought to make our presence felt there also. </p> <p>Indigenous Australian women have 3-5 times more HIV than non-indigenous born <a href="http://www.youtube.com/watch?v=SOmaGbL7PBQ&amp;feature=youtu.be">Australian</a> women. 50% of young indigenous women in remote Australian communities have chlamydia and <a href="http://www.youtube.com/watch?v=SOmaGbL7PBQ&amp;feature=youtu.be">gonorrhea</a>. With poor rural health services, these stark figures are on the increase. As an indigenous woman living with HIV from Aotearoa (also known as New Zealand), I came to the Melbourne and to the Vancouver Conferences to put the rights of indigenous women living with HIV on the global map. </p> <p class="Body">In Vancouver, I was privileged to be asked to provide the ‘Community Voice’ at the conference closing session.&nbsp; In this I declared: </p> <p class="Body">“<em>Despite all the advances in HIV, despite all the goals and strategies – despite all the good will, despite the UNAIDS <a href="https://opendemocracy.net/5050/hajjarah-nagadya/aids-targets-fear-factor">90 90 90</a> Fast-Track strategy, despite the UNAIDS ‘Gap <a href="http://www.unaids.org/sites/default/files/en/media/unaids/contentassets/documents/unaidspublication/2014/UNAIDS_Gap_report_en.pdf">Report’</a> identifying all those left behind, I am here to tell you that indigenous people have been left behind and unless things change we will continue to be left behind. 10 10 10&nbsp; is our reality</em>.” </p> <p>Canadian Aboriginal people make up 3% of the total population, yet make up&nbsp;&nbsp; 12.2% of the people newly acquiring HIV and 8.9% of the total number of people living with HIV in Canada. HIV transmission from injecting drug use amongst Canadian Aboriginal people is nearly five times higher than for other <a href="http://www.caan.ca/regional-fact-sheets/">Canadians</a>. </p> <p>There are about 5,000 indigenous groups globally, making up 400 million, or 4.5% of the world’s <a href="http://www.youtube.com/watch?v=SOmaGbL7PBQ&amp;feature=youtu.be">population</a>. We are the oldest continuous cultures on earth and often inhabit remote places with the highest levels of bio-diversity.&nbsp; We live in the Arctic, North Central and South America, Africa, South and South-East Asia, China and of course the Pacific. We constitute 10% of the world’s poorest populations. Many of us live in small communities, so the effects of HIV on our communities can be huge. Globally our HIV rates per 100,000 population in 2011 were 178 in Canada, 30 in Australia, 22 in New Zealand and 21 in North America.&nbsp; These HIV rates are driven by widespread global inequalities in the social determinants of our health, fuelled by stigma, discrimination and racism against our peoples.</p><p><span class='wysiwyg_imageupload image imgupl_floating_none caption-xlarge'><a href="//cdn.opendemocracy.net/files/imagecache/wysiwyg_imageupload_lightbox_preset/wysiwyg_imageupload/557135/IICW banner and Marama.jpg" rel="lightbox[wysiwyg_imageupload_inline]" title=""><img src="//cdn.opendemocracy.net/files/imagecache/article_xlarge/wysiwyg_imageupload/557135/IICW banner and Marama.jpg" alt="" title="" class="imagecache wysiwyg_imageupload caption-xlarge imagecache imagecache-article_xlarge" style="" width="460" /></a> <span class='image_meta'><span class='image_title'>Marama Pala in front of the quilt of the Indigenous International Community of Women living with HIV</span></span></span></p> <p>HIV is widely transmitted amongst us heterosexually and through injection drug use and particularly affects our women and young people. As indigenous Australian epidemiologist, James <a href="http://www.aids2014.org/Default.aspx?pageId=624">Ward</a>, stated in his plenary <a href="http://www.youtube.com/watch?v=SOmaGbL7PBQ&amp;feature=youtu.be">presentation</a> at the Melbourne AIDS conference, "indigenous women are absolutely over-represented in HIV epidemics among indigenous populations." </p> <p>Indigenous communities also continue to be colonised by <a href="http://www.indigenousaustralia.info/land/land-rights.html">others</a>, who seek and seize scarce resources such as oil, precious minerals and other natural resources from us, whilst we still have scant recourse to justice to reclaim our ancestral ownership. Such chronic theft of our natural resources is deeply detrimental to our psycho-social as well as our material and physical well-being, and inevitably contributes to mass unemployment, addictive behaviours and consequent health problems. Colonisation and the persistent hegemonic view that continues to regard indigenous cultures as inferior have contributed to the limited availability of Western health services in our communities, and to the gaps between indigenous peoples and the non-indigenous population in sexual and reproductive health and rights and the prevalence of HIV in our communities. </p> <p>The fundamental human rights issues facing indigenous woman run broad and deep. They include the right to have access to traditional and appropriate sexual health services, sex education and HIV awareness. For women, the perceived inferiority of our indigenous status is exacerbated by misogyny, our remote <a href="http://www.youtube.com/watch?v=SOmaGbL7PBQ&amp;feature=youtu.be">locations</a>, economic status, sexual orientation, marital status and disability. We experience these not only from non-indigenous people but also increasingly from indigenous men who are practising the Western behaviour they have been taught. </p> <p>Whilst the reality shows that indigenous women are living in environments of high gender based <a href="https://womensrefuge.org.nz/WR/Domestic-violence/Statistics.htm">violence</a>, increased levels of sexual violence and alcohol abuse, low education, and high rates of unwanted pregnancies, sexuality is still a largely taboo subject amongst many indigenous communities. Not talking about sex has been categorized by outsiders as a cultural and traditional practice of indigenous peoples, but this construct has stemmed from the spread of Victorian values by our colonisers. Pre-<a href="http://www.uhpress.hawaii.edu/p-5224-9781869692773.aspx">colonisation</a>, we had coming-of-age ceremonies and rites of passage, designed to educate youth on all subjects of sexual health. These were banned by our colonisers. Within some cultures these were still ‘discreetly’ preserved and&nbsp; are now still held in secret due to the imposition of other cultures and value systems.&nbsp; </p> <p>From a personal perspective, I can confirm that as a young Māori woman raised in a large Māori family, I experienced differing levels of physical and sexual abuse, rape, drug and alcohol abuse, gender-based violence; oppressive behaviour, poverty, and crime. My upbringing lacked any sexual education, rites of passage, or empowerment as a woman, limiting also my children’s ability to inherit the traditions and culture we have left. </p> <p>Everything in my own personal upbringing contributed to the moment when I contracted HIV at the age of 22 in 1993. Placing me as a minority within a minority within a minority. I was also told then to forget having children, as the chance of transmission is so high.&nbsp; I had not only been given a death sentence, but also told that I could not contribute to my community either culturally or traditionally. Culturally, HIV had impacted my entire family, extended family and community. </p> <p>After 12 years of believing that I could not have children, in 2005 I was told that because of medical improvements there was no reason I <a href="http://i-base.info/guides/pregnancy/becoming-a-mother">couldn’t</a> have children. I had been single for 6 years. This is another issue for indigenous women living with HIV: disclosure of HIV status generally leads to rejection of potential spouses. Then I was given an opportunity to meet with other Pacific people living with HIV. It was here that I met my future husband and was able to have two healthy HIV negative children: allowing me to traditionally pass on the knowledge and lands I inherited. <a href="http://www.teara.govt.nz/en/te-ture-maori-and-legislation/page-2">Lands</a> which we Maori still own but which we cannot develop, live in or utilise, thanks to colonial and post-colonial legislation. </p> <p>I have suffered stigma and <a href="http://hivandthelaw.com/perspectives/real-stories/new-zealand">discrimination</a> and have been described as an irresponsible mother, placing my children at risk should their father or I perish. The adopted and imposed view towards <a href="http://www.ipsnews.net/2014/07/indigenous-communities-say-education-funding-key-to-fighting-hivaids/">HIV</a> within Māori society is that I should not have the inherent birthright to procreate. Therefore, for the life span of my children (9 and 6 years) I have been defending my <a href="http://www.scoop.co.nz/stories/GE1503/S00041/stigma-and-discrimination-kills.htm">right</a> to bear children, of mixed heritage and facing stigma and <a href="https://www.afao.org.au/library/hiv-australia/volume-11/vol.-11-number-3/nothing-about-us-without-us!-hiv-and-indigenous-peoples#.Vb87BUWRI1h">discrimination</a> within New Zealand society towards our ‘AIDS Family’. My children too, now are facing the same discrimination in schools and the wider community. </p> <p>Organisations I have helped to found nationally and internationally have advocated for the right to have culturally and traditionally based sexual and reproductive health policies and programmes in New Zealand and globally, and challenged and exposed the disparities within the current structures. These organisations have utilized the <a href="http://www.un.org/esa/socdev/unpfii/documents/DRIPS_en.pdf">United Nations Declaration for the Rights of Indigenous Peoples</a>, <a href="http://www.ilo.org/dyn/normlex/en/f?p=NORMLEXPUB:12100:0::NO::P12100_ILO_CODE:C169">the International Labour Organisation – C169 – Indigenous and Tribal Peoples Convention 1989</a>, The <a href="http://www.iiwgha.org/key-documents/the-toronto-charter/">Toronto Charter 2006</a>, and <a href="http://www.treaty2u.govt.nz/the-treaty-up-close/treaty-of-waitangi/">te Tiriti o Waitangi</a> as guiding policy documents. All declare the right to self-determination and to make decisions as indigenous peoples for indigenous peoples. </p> <p>The common thread that runs through both high-income countries and the “developing” countries is the lack of human rights-based approaches that empower indigenous women<strong><em> </em></strong>in both HIV prevention and care. This is further complicated by the lack of disaggregated <a href="http://www.youtube.com/watch?v=SOmaGbL7PBQ&amp;feature=youtu.be">data</a>, and the homogenizing of indigenous peoples<strong><em> </em></strong>within the dominant race. </p> <p>While Londoners celebrate the indigenous art of Aboriginal Australians in the British Museum and questions are raised about <a href="https://opendemocracy.net/5050/zoe-holman/enduring-civilisation-enduring-empire">who is authorised</a> to tell the story of the artefacts displayed and on whose terms, my hope is that article will also help to bring much-needed attention to the plight of indigenous women worldwide. </p> <p>Since 2006 indigenous people have been able to hold a pre-conference gathering before each International AIDS Conference. This has helped somewhat with raising our voice and attracting the attention of our governments.&nbsp; But there is still much work to be done to put us on the map in the global response to HIV and AIDS. <a href="http://www.afao.org.au/library/hiv-australia/volume-11/vol.-11-number-3/nothing-about-us-without-us!-hiv-and-indigenous-peoples#.U2u_g62Swz0">Nothing about us without us!</a></p> <p><em><strong>Read more articles on 50.50's platform <a href="https://opendemocracy.net/5050/5050-aids-gender-and-human-rights">AIDS, Gender and Human Rights </a></strong></em></p><fieldset class="fieldgroup group-sideboxs"><legend>Sideboxes</legend><div class="field field-related-stories"> <div class="field-label">Related stories:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> <a href="/5050/zoe-holman/enduring-civilisation-enduring-empire">Enduring civilisation, enduring empire?</a> </div> <div class="field-item even"> <a href="/5050/melina-loubicanmassimo/awaiting-justice-%E2%80%93-indigenous-resistance-to-tar-sand-development-in-cana">Awaiting justice: Indigenous resistance in the tar sands of Canada</a> </div> <div class="field-item odd"> <a href="/alice-welbourn/hiv-and-aids-language-and-blame-game">HIV and AIDS: language and the blame game</a> </div> <div class="field-item even"> <a href="/5050/susan-paxton/positive-and-pregnant-in-asia-how-dare-you">Positive and pregnant in Asia - How dare you</a> </div> <div class="field-item odd"> <a href="/5050/silvia-petretti/hiv-both-cause-and-consequence-of-violence-against-women">HIV: both the cause and the consequence of violence against women</a> </div> <div class="field-item even"> <a href="/5050/anonymous/hiv-homophobia-and-historical-regression-where-next-for-uganda">HIV, homophobia and historical regression: where next for Uganda?</a> </div> <div class="field-item odd"> <a href="/5050/lisa-veneklasen/climate-and-indigenous-peoples-real-dispute-at-un">Climate and Indigenous Peoples: the real dispute at the UN </a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/hiv-witnessing-realisation-of-raw-human-rights">HIV: witnessing the realisation of raw human rights</a> </div> <div class="field-item odd"> <a href="/5050/hajjarah-nagadya/aids-targets-fear-factor">AIDS targets: the fear factor </a> </div> <div class="field-item even"> <a href="/5050/silvia-petretti/i-am-one-of-those-foreigners-living-with-hiv-in-uk">&quot;I am one of those foreigners&quot;: living with HIV in the UK</a> </div> <div class="field-item odd"> <a href="/5050/nell-osborne/against-coerced-sterilisation-resounding-victory-in-namibia">Against coerced sterilisation: a resounding victory in Namibia</a> </div> <div class="field-item even"> <a href="/5050/mariella-sala/forced-sterilization-and-impunity-in-peru">Forced sterilization and impunity in Peru</a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn-louise-binder/compulsion-versus-compassion-hiv-treatment-for-women-and-children">Compulsion versus compassion: HIV treatment for women and children </a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/is-there-future-for-women-living-with-hiv">Is there a future for women living with HIV? </a> </div> <div class="field-item odd"> <a href="/5050/bev-wilson/women-living-with-hiv-matter-of-safety-and-respect">Women living with HIV: a matter of safety and respect </a> </div> </div> </div> </fieldset> <div class="field field-topics"> <div class="field-label">Topics:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> Civil society </div> </div> </div> <div class="field field-rights"> <div class="field-label">Rights:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> CC by NC 4.0 </div> </div> </div> 50.50 50.50 Civil society 50.50 Women's Movement Building 50.50 AIDS, Gender and Human Rights 50.50 Editor's Pick women's health gender justice feminism 50.50 newsletter Marama Pala Wed, 05 Aug 2015 11:45:33 +0000 Marama Pala 95030 at https://www.opendemocracy.net HIV and AIDS: language and the blame game https://www.opendemocracy.net/alice-welbourn/hiv-and-aids-language-and-blame-game <div class="field field-summary"> <div class="field-items"> <div class="field-item odd"> <p>The negative and dehumanizing language used by scientists discussing global HIV policy is sapping the soul of those on the receiving end. The call for an alternative language of nature and nurture must be heard.&nbsp; </p> </div> </div> </div> <p><span class='wysiwyg_imageupload image imgupl_floating_none caption-xlarge'><img src="//cdn.opendemocracy.net/files/imagecache/article_xlarge/wysiwyg_imageupload/521587/VolunteersVancouver.jpg_large.jpg" alt="A group of about 50 people posed for a photo wearing matching t-shirts" title="" class="imagecache wysiwyg_imageupload caption-xlarge imagecache imagecache-article_xlarge" style="" width="460" /> <span class='image_meta'><span class='image_title'>Volunteers at the International AIDS Conference, Vancouver, 2015. Photo: ICW Global, all rights reserved.</span></span></span>While attending the International AIDS Society Pathogenesis <a href="http://ias2015.org/Default.aspx?pageId=723">Conference</a>&nbsp; in Vancouver last week I posted on my facebook page:</p><p>"Have retreated from IAS2015 for a breather. Too much negative language about "loss to follow up", "defaulters", "failure to achieve viral suppression", "shock and kill" strategies against HIV reservoirs is damaging to this soul..." </p> <p>&nbsp;One of many kind responses came from Martha <a href="https://opendemocracy.net/5050/martha-tholanah/hiv-disclosure-changing-ourselves-changing-others">Tholanah</a>: </p> <p>"Mindfulness in use of language is important. Am I "lost to follow-up" or have I been "bullied out of care"? #ComplexitiesInDealingWithHumanBeings." </p> <p>Global HIV policy is full of dehumanizing, aggressive, militaristic and <a href="http://www.foreign.senate.gov/press/chair/release/kerry-meets-with-sir-elton-john-annie-lennox-unaids-director-michel-sidibe-to_discuss-aids-research-investments-and-policies">combative</a> phrases which are deeply depressive, not soothing for the soul. For instance, we people with HIV are often just called “<a href="http://www.who.int/hiv/topics/comorbidities/about/en/">PLHIV</a>” or “<a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4270359/">WLHIV</a>” short for “people/women living with HIV”. This reduction of an individual to a bunch of letters feels very dehumanizing and I can’t think of any other health condition where the individual is so reduced to an acronym.&nbsp; Similarly we are widely said to have been “infected” or to potentially “infect” others. In a word document thesaurus this translates as “impure, contaminated, perverted, infested….”. That doesn’t feel great. I have written before on openDemocracy 50.50 of the euphemism of “<a href="https://www.opendemocracy.net/5050/alice-welbourn-louise-binder/compulsion-versus-compassion-hiv-treatment-for-women-and-children">Option</a>” B+, a strategy which starts pregnant women on HIV treatment for life the day they are diagnosed, which is not an option for them -&nbsp; only their governments. </p> <p>Some UN documents, such as the 2013 WHO HIV treatment <a href="http://apps.who.int/iris/bitstream/10665/85327/1/WHO_HIV_2013.9_eng.pdf?ua=1">Guidelines</a>, seek for us to “<a href="http://apps.who.int/iris/bitstream/10665/85327/1/WHO_HIV_2013.9_eng.pdf?ua=1">achieve</a> viral suppression” and if we don’t, health staff –&nbsp; even some male activists with HIV - brand us as “<a href="http://timesmediamw.com/75000-people-defaulting-art/">defaulters</a>”, “failures” “wasting resources” and worse, with their targets and goals unmet. Susan Sontag wrote of this “blame the victim” mode long <a href="https://en.wikipedia.org/wiki/Illness_as_Metaphor">ago</a> and nothing has changed. Even the phrase “lost to <a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3427970/">follow</a> up” and “<a href="http://www.thebody.com/Forums/AIDS/Resistance/Q173547.html">treatment-naïve patients</a>” also make us sound somehow – well – naïve, careless and thoughtless, as if there might not be key intentional reasons for our “failure” to return to a clinic. In a recent trial in South Africa, where it was discovered that young women participants had not in fact made use of a tablet and gel that were being trialed when they said they had, they were deemed by the researchers to have ruined the trial by “<a href="http://america.aljazeera.com/opinions/2015/3/blame-research-design-for-failed-hiv-study.html">lying</a>”.&nbsp; As Professor Ida Susser explains: “when a study fails, we must be careful not to imply that the subjects are at fault. My analysis of the study suggests, rather, that research design was to <a href="http://america.aljazeera.com/opinions/2015/3/blame-research-design-for-failed-hiv-study.html">blame</a>.”</p><p>Other language that depresses includes the on-going <a href="http://ias2015.org/default.aspx?pageId=833">reference</a> to “HIV/AIDS” as if they are one and the same. Ever since HIV medication was introduced in the mid-1990s, HIV has no longer been a death sentence for those of us privileged enough to access treatment when we need it. Yet this phrase is still used repeatedly by those who should know better. </p> <p>Last week at the Vancouver <a href="http://ias2015.org/Default.aspx?pageId=723">International AIDS Conference</a>, one plenary presentation on a cure even talked of the virtues of “shock and <a href="http://ias2015.org/Default.aspx?pageId=752">kill</a>” tactics of using an “aggressive” regime of early treatment to suppress the HIV reservoir which builds up in our bodies after we first acquire HIV. Why do we have to use such combative, <a href="http://www.aidsmap.com/Shock-and-kill-approach-awakens-latent-HIV-in-test-tube/page/1434634/">militaristic</a> language when we could talk about “reduction” or management” of the reservoir instead? </p> <p>In response to our frustration over negative language, including that of the “Global Plan Towards The <a href="http://www.who.int/reproductivehealth/publications/linkages/hiv_pregnancies_2012/en/">Elimination</a> Of New HIV Infections Among Children By 2015 And Keeping Their Mothers Alive”, known widely just as the “elimination plan”, a number of us women living with HIV wrote an article for the Journal of the International AIDS <a href="http://www.jiasociety.org/index.php/jias/article/view/17990/722?search=Dilmitis">Society</a>, to explain why we found such language so debilitating and harmful and to offer alternative, blame-free, woman-positive, language instead. This has slowly gained traction in some corners. But it is yet to be adopted by mainstream HIV scientists, for whom perhaps numbers rather than language are more their comfort zone. Yet, many of us on the receiving end of such language feel battered and bruised by how it saps our souls. </p> <p>The Global Plan above has as its four strategies four “prongs”. As I explained in a <a href="http://rhrealitycheck.org/article/2013/06/09/the-pillars-and-possibilities-of-a-global-plan-to-address-hiv-in-women-and-their-children/">speech</a> in 2013, prongs remind me of pitch-forks and botched abortions rather than of a global strategy to care and support for women living with HIV as they prepare for motherhood. The potential ramifications of the use of such language should be considered carefully before its us ein global policies. Whilst published as global level as voluntary guidelines, it often has dire knock-on effects at the <a href="https://opendemocracy.net/5050/nell-osborne/against-coerced-sterilisation-resounding-victory-in-namibia">country</a> level.&nbsp;<span>&nbsp;</span>In that speech I offered alternative language also. </p> <p>Another concept which is curiously negative is the idea of “ending gender-based violence”, which is closely connected to HIV for women. In a West African regional workshop in <a href="http://salamandertrust.net/index.php/Projects/Dakar_Workshop_Sep_2013/">Dakar</a> in 2013, we asked UN staff, government staff and NGO staff alike what kind of world they dreamt of beyond the end of gender-based violence (GBV). Their common or unified response was “if we have a world without gender-based violence, then we will be out of a job…” I found that response immensely revealing about the self-limiting nature of using negative language since they were sub-consciously unable to work towards a world beyond GBV, firstly because such a positive concept had never even been considered and secondly because realising such a vision would herald their redundancies. </p> <p>Language, as <a href="http://georgelakoff.com/">Lakoff</a> and Johnson have explained at length, frames the way we think about and shape our worlds. If we use negative, combative, problem-focused, competitive militaristic language, we think and act accordingly. By contrast if we use the language of nature, nurture and growth our thoughts and actions respond creatively – and also turn to positive solutions. </p> <p>Militaristic, combative language is widely used in relation to cancer too – “<a href="http://scienceblog.cancerresearchuk.org/2014/12/25/the-enemy-within-50-years-of-fighting-cancer/">beating</a>” cancer, “fighting” it and, when someone dies, declaring that s/he has “lost her/his battle with it.” But such language, I believe, is both unnecessary and damaging to our souls. I am a great believer in organic gardening, in finding balance in my plot and in not zapping weeds or slugs with toxic <a href="https://en.wikipedia.org/wiki/Silent_Spring">chemicals</a> but with living alongside them, accepting them as part of nature’s rich tapestry, using physical barriers such as gravel, copper strips and old carpet to contain them instead, so that I can also grow nourishing vegetables safely. If I were to use any spray I would only use it with extreme <a href="http://steingraber.com/bio/">caution</a> and in very small quantity. Bugs were here before us and will outlive us. To imagine otherwise is folly indeed. </p> <p>Similarly, I look at my HIV as a part of me which I accept rather than reject. I live alongside it and around it in my body, with modest HIV medication, rather than trying to reject or defeat it. It is not a wholly negative experience. I and many colleagues thank our HIV for giving us many insights into the purpose of our lives and into the injustices which it has brought so many others around the world. I have had many good conversations over the past year with my sister, who has pancreatic cancer. She points out that when people die in the normal course of events, we do not say that they have lost the&nbsp;‘battle' to stay alive, but accept it as normal. &nbsp;Though challenged by her cancer, my sister is not&nbsp;fighting it: rather she is doing all she can to support her immune system so that it can best perform its normal function (cancer has been described as a breakdown of the immune system - the body is hard wired to heal). Recognising better the impermanence of life, the quality of her life is actually enhanced - this does not sound like&nbsp;‘a battle’. </p> <p>A more gentle, holistic response to the containment of disease is needed rather than the aggressively-charged metaphors which bombard us all. The one certainty that joins us all as living human beings is our impermanence - that we will die. Atul <a href="http://atulgawande.com/">Gawande</a> and Deepak <a href="https://www.deepakchopra.com/news/article/978">Chopra</a> have eloquently argued how our attempts to assume otherwise are hubristic and there is often more sense in our seeking to heal rather than to cure ourselves, to find balance in ourselves as our bodies deal with our ailments. </p> <p>The language of nature, nurture, roots, shoots, branches, warmth, rain, growth and creation is something that makes me feel good about myself and others around me.&nbsp; In my garden I need a toolshed, not an arsenal. </p> <p>With our tools, we can join together to create a better world for us all, with greater equity of income, of social, gender and environmental justice, greater involvement in political decision-making in all policies that affect our lives. What will help us along the way is a sense that we have scientists, donors and policy makers working with us, not against us, seeking a shared vision rather than chasing their targets, offering us respect, dignity and appreciation of the trials we face along the way in initiating – and continuing with – our self-care. We all need to work together in this garden and we need to respect the workings of the slugs, bugs and weeds also in our lives. </p> <p>The forces of nature are bigger than us all and to assume we can overcome them – and to blame people with HIV if we don’t - is folly on a grand scale indeed. </p><p><em><strong>Read more articles on the long running 50.50 platform <a href="https://opendemocracy.net/5050/5050-aids-gender-and-human-rights">AIDS, Gender and Human Rights </a></strong></em></p> <p>&nbsp;</p><fieldset class="fieldgroup group-sideboxs"><legend>Sideboxes</legend><div class="field field-related-stories"> <div class="field-label">Related stories:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> <a href="/5050/alice-welbourn/hiv-treatment-no-experts-saviours-or-victims-just-women">No experts, saviours or victims: women living with HIV</a> </div> <div class="field-item even"> <a href="/5050/nell-osborne/against-coerced-sterilisation-resounding-victory-in-namibia">Against coerced sterilisation: a resounding victory in Namibia</a> </div> <div class="field-item odd"> <a href="/5050/susan-paxton/positive-and-pregnant-in-asia-how-dare-you">Positive and pregnant in Asia - How dare you</a> </div> <div class="field-item even"> <a href="/5050/aziza-ahmed-jennifer-gatsi-mallet/sterilisation-fight-for-bodily-integrity">Sterilisation: the fight for bodily integrity</a> </div> <div class="field-item odd"> <a href="/5050/aziza-ahmed/sterilized-against-our-will">Sterilized: against our will </a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn-louise-binder/compulsion-versus-compassion-hiv-treatment-for-women-and-children">Compulsion versus compassion: HIV treatment for women and children </a> </div> <div class="field-item odd"> <a href="/5050/hajjarah-nagadya/aids-targets-fear-factor">AIDS targets: the fear factor </a> </div> <div class="field-item even"> <a href="/5050/ida-susser/hiv-fight-for-trade-related-intellectual-property-regulations">HIV: the fight for trade related intellectual property regulations</a> </div> <div class="field-item odd"> <a href="/5050/martha-tholanah/hiv-disclosure-changing-ourselves-changing-others">HIV disclosure: changing ourselves, changing others </a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/hiv-and-global-plan-turning-tide-or-wash-out-for-women">HIV and the Global Plan: turning the tide or a wash-out for women?</a> </div> <div class="field-item odd"> <a href="/5050/cecilia-chung/hiv-call-for-solidarity-with-transgender-community">HIV: a call for solidarity with the transgender community </a> </div> <div class="field-item even"> <a href="/5050/andrea-von-lieven/hiv-nothing-about-us-without-us">HIV: nothing about us, without us</a> </div> <div class="field-item odd"> <a href="/5050/maria-de-bruyn/hiv-what-kind-of-evidence-counts">HIV: what kind of evidence counts ?</a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/hiv-of-bombs-and-banks-and-transformation">HIV: of bombs and banks and transformation...</a> </div> <div class="field-item odd"> <a href="/5050/aziza-ahmed/is-evidence-all-it-will-take">Is evidence all it will take? </a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/absence-of-evidence-does-not-mean-evidence-of-absence">Absence of evidence does not mean evidence of absence</a> </div> <div class="field-item odd"> <a href="/5050/anca-nitulescu/exploring-violence-as-consequence-of-hiv">Exploring violence as a consequence of HIV </a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/aids-2014-conference-stepping-up-pace-and-still-on-wrong-path">AIDS 2014 Conference: stepping up the pace and still on the wrong path </a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/aids-and-adolescents-denying-access-to-health">AIDS and adolescents: denying access to health </a> </div> <div class="field-item even"> <a href="/5050/sindi-putri/indonesia-facing-life-with-hiv">Indonesia: facing life with HIV </a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/end-to-aids-not-through-medication-alone">An end to AIDS?: Not through medication alone</a> </div> <div class="field-item even"> <a href="/5050/ida-susser-zena-stein/bioinsecurity-and-hivaids">Bio-insecurity and HIV/AIDS </a> </div> <div class="field-item odd"> <a href="/5050/louise-binder/no-test-no-arrest-criminal-laws-to-fuel-another-hiv-epidemic">No test, no arrest: criminal laws to fuel another HIV epidemic</a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/is-there-future-for-women-living-with-hiv">Is there a future for women living with HIV? </a> </div> <div class="field-item odd"> <a href="/5050/silvia-petretti/hiv-in-italy-epidemic-continues-growing-among-women">HIV in Italy: the epidemic continues growing among women</a> </div> <div class="field-item even"> <a href="/5050/andrea-von-lieven/hiv-nothing-about-us-without-us">HIV: nothing about us, without us</a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/hiv-and-global-plan-turning-tide-or-wash-out-for-women">HIV and the Global Plan: turning the tide or a wash-out for women?</a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/positive-women-human-rights-defenders">Positive women human rights defenders</a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/more-than-just-pound-of-flesh">&quot;More than just a pound of flesh&quot;?</a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/hiv-free-generation-human-sciences-vs-plumbing">An HIV-free generation: human sciences vs plumbing </a> </div> </div> </div> </fieldset> <div class="field field-topics"> <div class="field-label">Topics:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> Science </div> </div> </div> <div class="field field-rights"> <div class="field-label">Rights:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> CC by NC 4.0 </div> </div> </div> 50.50 50.50 Science 50.50 Women's Movement Building 50.50 AIDS, Gender and Human Rights temp 50.50 Editor's Pick women's movements women's human rights women's health gender bodily autonomy 50.50 newsletter Alice Welbourn Mon, 27 Jul 2015 08:43:09 +0000 Alice Welbourn 94717 at https://www.opendemocracy.net AIDS targets: the fear factor https://www.opendemocracy.net/5050/hajjarah-nagadya/aids-targets-fear-factor <div class="field field-summary"> <div class="field-items"> <div class="field-item odd"> <p>HIV is not just a health issue but a multi-sectoral issue that requires many different players. Is the UNAIDS HIV '90-90-90' fast-track initiative in Uganda achievable?</p> </div> </div> </div> <p><span class='wysiwyg_imageupload image imgupl_floating_none caption-xlarge'><img src="//cdn.opendemocracy.net/files/imagecache/article_xlarge/wysiwyg_imageupload/521587/ICWGlobalChair&amp;DeputyVancouver2015.jpeg" alt="Two women stand next to one another in front of a microphone" title="" class="imagecache wysiwyg_imageupload caption-xlarge imagecache imagecache-article_xlarge" style="" width="460" /> <span class='image_meta'><span class='image_title'>ICW Global Chair Martha Tholanah (l) and Deputy Marama Pala (r) at the International AIDS Conference. Photo (c) Alice Welbourn</span></span></span>UNAIDS has announced that by 2020, 90% of all people living with HIV should know their HIV status, 90% of all people diagnosed with HIV should receive sustained&nbsp;antiretroviral therapy (ART), and 90% of all people receiving anti-retroviral therapy should have achieved viral suppression. By 2030, these targets are all raised to 95%. This is goal of the <a href="http://www.unaids.org/en/resources/campaigns/World-AIDS-Day-Report-2014">Fast Track</a> initiative. </p><p>Many countries have welcomed and embraced this ambitious target, but the question is whether it is possible to do so.&nbsp; This is a target that everyone wants to achieve if we are to reduce HIV prevalence, but are we ready as countries to achieve this? In order to do so, people have to be tested, have to start treatment at some stage, and have to adhere to treatment, once started, for life. There are many serious hurdles they can meet along the way.</p> <p>Testing is the first area of concern. We all know that early treatment can reduce rates of onward transmission by 90% in theory, because if people with HIV are able to adhere to their treatment our ‘viral load’ should drop to an undetectable level, meaning that we cannot <a href="http://i-base.info/htb/24904">pass</a> on our HIV to anyone else – as if we should ever wish to. But how many countries have been successful in putting all people in need of ART on treatment? In Uganda, for example, over 1.5 million people are living with HIV but only 564,453 were on anti-retroviral therapy, as indicated in a 2013 HIV and AIDS Uganda country progress <a href="http://www.unaids.org/sites/default/files/country/documents/UGA_narrative_report_2014.pdf">report</a>. This same report revealed that only 71.7% of the total number of pregnant women tested for HIV were given ARVs during their ante-natal <a href="http://www.unaids.org/sites/default/files/country/documents/UGA_narrative_report_2014.pdf">care</a>. Thus we can see that some children will have been born with HIV, which will in turn create a bigger gap between the targets and reality.</p> <p>In many health facilities with a huge number of pregnant women and very few health workers, group pre-counselling and testing is practised as opposed to individual counselling followed by testing - which is what is meant to happen. One-to-one counselling is only offered just before handing over the test results. Group-counseling is in the form of a health talk. This is not adequate enough for someone who is testing for the first time. Because of the impersonal nature of group - as opposed to one-to-one-counselling - women are often not prepared for what may be ahead of them. This has created an environment where many women run away before receiving their test results, and others do not carry on taking their drugs after being found to be HIV-positive.</p> <p>Violence in the form of stigma and discrimination is also becoming a chronic characteristic in many settings. It stands as another serious barrier to achievement of this ambitious target, both in healthcare facilities and in families and homes. </p> <p>The fear of testing is very real. Both men and women fear taking the HIV test because they do not want to be seen and gossiped about. Those who already know their status are afraid to start their medication and often hide while swallowing the drugs. This kind of fear has hindered adherence to treatment and leads to the failure to suppress the virus in their bodies. Violence and the fear of violence also marginalises people living with HIV and undermines the national prevention and treatment efforts. &nbsp;Until society understands that HIV is like any other disease, that it can be manageable and no longer a death sentence as it was previously referred to, the threat or reality of violence can also mean that this ambitious target may instead become a nightmare to haunt us.</p> <p>In addition, donors are reducing their <a href="http://www.theeastafrican.co.ke/news/Uganda-faces-tough-choices-as-donors-cut-aid/-/2558/2235888/-/2i5qc1/-/index.html">funding</a>, and in Uganda we have failed to increase our domestic funding for health. In the 2015/2016 financial year, only 7% of the national budget was allocated to <a href="http://www.into-sa.com/countries/UG/news/revised-budget-2015-2016-focusses-on-energy-and-transport">health</a>, which is less than the Abuja target which proposed that countries allocate 15% of their national budget to <a href="http://www.who.int/healthsystems/publications/abuja_report_aug_2011.pdf?ua=1">health</a>. We are very concerned that this will not be sufficient to achieve the Fast Track target if donors continue to reduce their funding while at the same time Uganda is not increasing the domestic funding.&nbsp; </p> <p>Uganda is also still reporting cases of a lack of supplies. There are stock-outs of ARVs, despite the 2013 WHO treatment <a href="http://www.who.int/hiv/pub/guidelines/arv2013/en/">guidelines</a> that recommend starting all people living with HIV whose CD4 counts are below 500 on ART. In addition, there are regular stock-outs of testing kits even though they are obviously essential as an entry point to HIV treatment.</p> <p>Viral load testing in most of the low-income countries is still a dream. People are not even aware of what a viral load is, and are not in a position to pay for the test anyway. The test is widely charged for in Uganda although it is supposed to be free if donated by PEPFAR. There are just a few men - and even fewer women - in Uganda who are able to pay an amount of $50 to have their viral load tested. Until this service is made free for even the poorest people to access it, people won’t check their viral load, and it will be hard to understand whether the virus is being suppressed and whether the global target is being achieved or not.</p> <p>So even though we know that about 550,000 of us so far have started HIV treatment, without routine viral load screening we have no idea how many of us have been able to adhere to treatment and thus have an undetectable viral load. Even the phrase "achieving viral suppression" - the one normally used by donors and policy makers - puts the blame on our shoulders if we don’t achieve it.</p> <p>&nbsp;How fair is this allocation of blame?</p> <p>Criminalisation also plays a part here. <a href="http://www.hivjustice.net/topic/lawsandpolicies/punitive-laws-and-policies/">Countries</a> have passed laws that criminalise intentional HIV transmission and attempted HIV transmission, despite the fact that we are still advocating for voluntary HIV testing. Such punitive laws are more likely to deter people further from accessing health services, including HIV testing. People work out quickly that no one needs to leave a trail that will be used by the law to count him or her out - and this includes pregnant women. People in these environments are therefore now more likely not to test, and are also likely not to go for treatment because according to our new law in Uganda, you can be convicted if you know your HIV status.</p> <p>It is vital that people understand that HIV is not just a health issue but a multi-sectoral issue that requires many different players. The more people tag it to individuals, the more we need to talk not just about overcoming HIV and AIDS as a non-curable disease, but about overcoming violence against people with HIV in the form of stigma and discrimination. </p><p><em><strong>Read more articles on the long running 50.50 platform <a href="https://opendemocracy.net/5050/5050-aids-gender-and-human-rights">AIDS, Gender and Human Rights </a></strong></em></p> <p>&nbsp;</p> <p>&nbsp;</p> <p>&nbsp;</p> <p>&nbsp;</p> <p>&nbsp;</p> <p>&nbsp;</p><fieldset class="fieldgroup group-sideboxs"><legend>Sideboxes</legend><div class="field field-related-stories"> <div class="field-label">Related stories:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> <a href="/5050/anonymous/hiv-homophobia-and-historical-regression-where-next-for-uganda">HIV, homophobia and historical regression: where next for Uganda?</a> </div> <div class="field-item even"> <a href="/5050/hajjarah-nagadya/uganda-social-impact-of-hiv-criminal-law-0">Uganda: the social impact of HIV criminal law</a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn-louise-binder/compulsion-versus-compassion-hiv-treatment-for-women-and-children">Compulsion versus compassion: HIV treatment for women and children </a> </div> <div class="field-item even"> <a href="/5050/ida-susser-zena-stein/bioinsecurity-and-hivaids">Bio-insecurity and HIV/AIDS </a> </div> <div class="field-item odd"> <a href="/5050/martha-tholanah/hiv-disclosure-changing-ourselves-changing-others">HIV disclosure: changing ourselves, changing others </a> </div> <div class="field-item even"> <a href="/5050/louise-binder/no-test-no-arrest-criminal-laws-to-fuel-another-hiv-epidemic">No test, no arrest: criminal laws to fuel another HIV epidemic</a> </div> <div class="field-item odd"> <a href="/5050/silvia-petretti/hiv-in-italy-epidemic-continues-growing-among-women">HIV in Italy: the epidemic continues growing among women</a> </div> <div class="field-item even"> <a href="/5050/aziza-ahmed-jennifer-gatsi-mallet/sterilisation-fight-for-bodily-integrity">Sterilisation: the fight for bodily integrity</a> </div> <div class="field-item odd"> <a href="/5050/jessica-horn/accepted-mishaps-faith-healing-hiv-and-aids-responses">Accepted mishaps? Faith healing, HIV and AIDS responses</a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/absence-of-evidence-does-not-mean-evidence-of-absence">Absence of evidence does not mean evidence of absence</a> </div> <div class="field-item odd"> <a href="/5050/aziza-ahmed/is-evidence-all-it-will-take">Is evidence all it will take? </a> </div> <div class="field-item even"> <a href="/5050/susan-paxton/positive-and-pregnant-in-asia-how-dare-you">Positive and pregnant in Asia - How dare you</a> </div> <div class="field-item odd"> <a href="/5050/baby-rivona-oldri-mukuan/global-mechanism-regional-solution-ending-forced-sterilisation">Global mechanism, regional solution: ending forced sterilisation </a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/end-to-aids-not-through-medication-alone">An end to AIDS?: Not through medication alone</a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/positive-women-human-rights-defenders">Positive women human rights defenders</a> </div> <div class="field-item even"> <a href="/5050/ida-susser/microbicide-success-feminism-is-essential-to-good-science">A microbicide success: feminism is essential to good science</a> </div> <div class="field-item odd"> <a href="/5050/ida-susser/hiv-fight-for-trade-related-intellectual-property-regulations">HIV: the fight for trade related intellectual property regulations</a> </div> </div> </div> </fieldset> <div class="field field-country"> <div class="field-label"> Country or region:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> Uganda </div> </div> </div> <div class="field field-topics"> <div class="field-label">Topics:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> Civil society </div> </div> </div> <div class="field field-rights"> <div class="field-label">Rights:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> CC by NC 4.0 </div> </div> </div> 50.50 50.50 Uganda Civil society 50.50 AIDS, Gender and Human Rights 50.50 Our Africa temp 50.50 Editor's Pick women's health violence against women bodily autonomy 50.50 newsletter Hajjarah Nagadya Mon, 27 Jul 2015 08:39:36 +0000 Hajjarah Nagadya 94702 at https://www.opendemocracy.net No experts, saviours or victims: women living with HIV https://www.opendemocracy.net/5050/alice-welbourn/hiv-treatment-no-experts-saviours-or-victims-just-women <div class="field field-summary"> <div class="field-items"> <div class="field-item odd"> <p class="MsoNormal">Beyond bio-medical models, recent research has enabled a better psycho-social understanding of how women can access HIV treatment, if they want to, in stressful daily conditions.</p> </div> </div> </div> <p><span>If there was one key </span><a href="http://www.unisdr.org/2006/ppew/info-resources/ewc3/checklist/English.pdf">message</a><span> to be learnt from the immense tragedy of the devastating tsunami that rocked 14 Indian Ocean countries in late December 2004, killing 230,000 and leaving millions </span><a href="https://en.wikipedia.org/wiki/2004_Indian_Ocean_earthquake_and_tsunami">homeless</a><span>, it was the fundamental importance of engaging communities to build on their local experiences, in order that their knowledge may act as an early warning system to raise the alarm for future potential catastrophes.</span><strong> </strong><span>This seems like an obvious piece of common sense, but it wasn’t in place before that tsunami and it still isn’t in place in the context of HIV, even though, over the past 30 years, 130 times the number of people estimated to have died in that tsunami - about </span><a href="http://www.avert.org/worldwide-hiv-aids-statistics.htm">30</a><span> million people - have lost their lives to AIDS-related illnesses.</span></p><p> <span class='wysiwyg_imageupload image imgupl_floating_none_right caption-xlarge'><a href="//cdn.opendemocracy.net/files/imagecache/wysiwyg_imageupload_lightbox_preset/wysiwyg_imageupload/555700/unnamed_1.jpg" rel="lightbox[wysiwyg_imageupload_inline]" title=""><img src="//cdn.opendemocracy.net/files/imagecache/article_xlarge/wysiwyg_imageupload/555700/unnamed_1.jpg" alt="" title="" class="imagecache wysiwyg_imageupload caption-xlarge imagecache imagecache-article_xlarge" style="" width="460" /></a> <span class='image_meta'><span class='image_title'>AIDS memorial quilt. Credit. Alice Welbourn.</span></span></span></p><p>In 2014, 36.9 million people were estimated to be living with HIV <a href="http://www.unaids.org/sites/default/files/media_asset/20150714_FS_MDG6_Report_en.pdf">globally</a>.&nbsp; At the end of 2012 it was estimated that 52% of adults with HIV globally were <a href="http://www.avert.org/women-and-hiv-aids.htm">women</a> and globally, AIDS-related illness is the leading cause of <a href="http://www.avert.org/women-and-hiv-aids.htm">death</a> amongst women of reproductive age. </p> <p>The lesson from the tsunami isn’t new. Professor of International Health Michael <a href="http://www.med.monash.edu.au/news/2009/michael-alpers-biography.html">Alpers</a> who has contributed significantly to the eradication of <a href="http://www.nlm.nih.gov/medlineplus/ency/article/001379.htm">kuru</a> in Papua New Guinea over the past 50 years, knew this instinctively when in 1961, to his medical colleagues’ amazement, he first moved to live and <a href="https://www.youtube.com/watch?v=vw_tClcS6To">work</a> amongst the Fore, the community where kuru was widespread.&nbsp; But the lesson is still missing from the world of global HIV policy. </p> <p>In the light of a huge lack of recognition or systematic collection of local knowledge, ATHENA <a href="http://athenanetwork.org/">Network</a>, <a href="http://www.avac.org/">AVAC</a>, and <a href="http://www.salamandertrust.net/">Salamander</a> Trust with UN <a href="http://unwomen.org/">Women</a>, are undertaking the first ever inter-continental study of HIV care and treatment access issues for and by women living with HIV. It is a multi-stage review, the initial <a href="http://www.salamandertrust.net/index.php/Projects/Global_Treatment_Access_Review/">findings</a> of which are presented this week at the International AIDS pathogenesis conference taking place now in <a href="http://ias2015.org/">Vancouver</a>. </p> <p>This global <a href="http://salamandertrust.net/index.php/Projects/Global_Treatment_Access_Review/">review</a> takes place at a critical point in the HIV epidemic where increased focus is being placed on early testing and treatment for all people with HIV. </p> <p>Two specific strategies are being promoted by UNAIDS and others. ‘<a href="https://www.opendemocracy.net/5050/alice-welbourn/hiv-witnessing-realisation-of-raw-human-rights">Fast</a>-track’ calls for 95% of all individuals being tested, 95% of all those who test positive on treatment and 95% of all those on treatment with high adherence (making it nigh impossible for us to pass on HIV to others) by 2030. </p> <p>The other new strategy comes from the recent <a href="http://www.niaid.nih.gov/news/newsreleases/2015/Pages/START.aspx">START</a> research trial results, which indicate that it may be best for people with HIV to begin treatment as soon as they test positive rather than waiting until their “CD4 count” drops to 350, as currently recommended by the British HIV <a href="http://www.bhiva.org/documents/Guidelines/Treatment/consultation/150621-BHIVA-Treatment-GL-Final-draft-for-consultation.pdf">Association</a>. </p> <p>Both these initiatives may look fine in principle, but how do they match up to women’s lived experiences? As I explained last <a href="https://www.opendemocracy.net/5050/alice-welbourn/hiv-witnessing-realisation-of-raw-human-rights">December</a>, the ‘Fast-Track’ process only suggests increasing the budget allocated for working in and with communities from 1% to 4% - hardly a huge seachange. Far more investment than this is needed in communities to meet these massive targets. And the START trial <a href="http://www.nejm.org/doi/full/10.1056/NEJMoa1506816?query=featured_home">results</a> are still only dealing with small <a href="http://www.bhiva.org/documents/Guidelines/Treatment/consultation/150621-BHIVA-Treatment-GL-Final-draft-for-consultation.pdf">numbers</a> of people benefiting from beginning treatment immediately. 97% of the study population suffered no serious outcome in the average 3-year period of follow-up. The <em>risks</em> of starting treatment early are yet to be published and there is no discussion yet of potential physical or socio-economic consequences of starting early, such as side-effects, intimate partner or other gender-based <a href="https://vimeo.com/69251113">violence</a>.&nbsp; Moreover only 26.8% of the trial participants were female and the average age of participants was 35, so several of us reserve judgment about the wisdom of this as a blanket strategy for women. </p> <p>In light of many “<a href="https://www.opendemocracy.net/5050/alice-welbourn/absence-of-evidence-does-not-mean-evidence-of-absence">anecdotal</a>” reports from women with HIV that show that predominantly bio-medical strategies fail women – and in which women then get <a href="http://timesmediamw.com/75000-people-defaulting-art/">blamed</a> for “defaulting” or “wasting resources” - our review sought formally to research treatment access issues from the viewpoint of women living with HIV, to throw a fresh perspective with a gendered lens on treatment access issues. </p> <p>For example, although there has been a huge focus on <a href="http://www.emtct-iatt.org/">pregnancy</a> in women with HIV, there are also still major gaps in information on women’s access to care and treatment across the lifecycle, in particular for teenage girls and women with HIV not currently pregnant. We also need to disaggregate data beyond age and sex to recognise and track diversity beyond&nbsp; heteronormative norms. </p> <p>The challenge of research is often the need to learn about social and behavioural contexts more than medical, just as Alpers did; to succeed, we must better understand which routines and methods work best for women in stressful daily conditions. Research fatigue is a reality<strong> </strong>and so we set out to develop a more <a href="http://www.salamandertrust.net/resources/web_UNWomen_et_al_IAS_treatment%20access%20poster_A0.pdf">holistic</a> approach; we hoped to have discussions that were relevant, meaningful and useful for the groups in each country as well as feeding into the global review. </p> <p>We formed a Global Reference Group (GRG) of 14 women living with HIV from 11 different countries and from many different backgrounds and experiences, to guide, inform and shape this study. We conducted a literature review, a holistic pre-consultation exercise and a closed list-serv discussion to shape questions for an interactive “community dialogue”, facilitated by women with HIV, with groups of other women with HIV in Bolivia, Cameroon, Nepal and Tunisia. These discussions explored the barriers and enablers that women face at “micro-, meso- and macro-levels” in their lives. We realised that we needed to approach this in a way that enables women to describe their realities and not just to ask the same narrowly focused ‘barriers to treatment’ questions<strong> </strong>that outside researchers have asked for many years, which would elicit limited answers. </p> <p>Through peer outreach, every effort was also made to ensure that women in all their diversities were meaningfully involved in the discussions: young women, women with experience of sex work, drug use, transgender women, widows of migrant workers and with other potentially marginalizing factors such as living in poverty were involved. </p> <p>The community dialogues were rich and stark, with multiple complex challenges to starting and staying on treatment (if desired) identified. In many cases one wonders that women manage to take treatment at all. One woman from Tunisia stated: </p> <p>“I am living with HIV AIDS since 2007; married and I’ve got two sons. After several years of marriage, my husband was very ill and his health deteriorated so much, we went to the hospital and after doing lot of tests and analyzes proved to us that he was infected with the virus, and a few days after his death, doctors have conducted tests for me and my sons; I was shocked to discover my disease and since started my journey with the torment of society that does not have mercy on the one hand and on the other hand, his family refused to accept us, me, it did not stop at that, even my sister accused me of moral corruption because of the virus and then she and my brothers kicked me off from my father's house, I didn’t go there since. I was also exposed to many cases of stigma and discrimination, for example, while I had to stay in hospital for several days, and specifically in the Department of Rheumatology the medical team put a banner reading in French ‘Beware: sick with AIDS.’” </p> <p>Few inclusive examples exist to date of peer-led and -governed analyses of treatment access such as this, in which women with HIV are placed at the centre of design, implementation and analysis of research. Yet, as the tsunami reports showed, as community members, women living with HIV are best placed<strong> </strong>to frame and prioritize the issues and areas that should be interrogated as part of an effort to fill the knowledge gaps and make strategies right for women. </p> <p>As GRG member Violeta Ross from Bolivia commented: “The participatory methodology is an exercise of empowerment at individual and community level. There are no experts, saviours or victims when we use this methodology, we learn and help one another. In all areas of life, women are&nbsp;the experts.” </p> <p>This on-going review (which is continuing in more depth in Zimbabwe, Uganda and Kenya) is informed by and interrogates the interplay of structural factors that affect overall <a href="http://www.salamandertrust.net/index.php/Projects/Global_Treatment_Access_Review/">access</a> to health and resources of women with HIV. These structural factors must be addressed in a human rights-<a href="https://www.opendemocracy.net/5050/5050-aids-gender-and-human-rights">based</a> approach to policy, programmatic and budgetary responses and interventions that consider the visions, needs and rights of women living with HIV.&nbsp; </p> <p>The world of HIV needs to learn from other branches of disaster preparedness and community health and listen to and learn from those most affected by the issues. Until it does so, we are in danger of remaining on a fast-track for women, which may look great in a stadium, but in reality leads to nowhere. </p> <p><em>With thanks to our consortium colleagues involved in this research, to GRG members and to all the women who took part, and to UNWomen. </em></p><p><em><strong>Read more articles on the long running 50.50 platform <a href="https://opendemocracy.net/5050/5050-aids-gender-and-human-rights">AIDS, Gender and Human Rights </a></strong><br /></em></p><fieldset class="fieldgroup group-sideboxs"><legend>Sideboxes</legend><div class="field field-related-stories"> <div class="field-label">Related stories:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> <a href="/5050/alice-welbourn/end-to-aids-not-through-medication-alone">An end to AIDS?: Not through medication alone</a> </div> <div class="field-item even"> <a href="/5050/maria-de-bruyn/hiv-what-kind-of-evidence-counts">HIV: what kind of evidence counts ?</a> </div> <div class="field-item odd"> <a href="/5050/ida-susser/microbicide-success-feminism-is-essential-to-good-science">A microbicide success: feminism is essential to good science</a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/hiv-free-generation-human-sciences-vs-plumbing">An HIV-free generation: human sciences vs plumbing </a> </div> <div class="field-item odd"> <a href="/5050/ida-susser-zena-stein/bioinsecurity-and-hivaids">Bio-insecurity and HIV/AIDS </a> </div> <div class="field-item even"> <a href="/5050/martha-tholanah/hiv-disclosure-changing-ourselves-changing-others">HIV disclosure: changing ourselves, changing others </a> </div> <div class="field-item odd"> <a href="/5050/bev-wilson/women-living-with-hiv-matter-of-safety-and-respect">Women living with HIV: a matter of safety and respect </a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn-louise-binder/compulsion-versus-compassion-hiv-treatment-for-women-and-children">Compulsion versus compassion: HIV treatment for women and children </a> </div> <div class="field-item odd"> <a href="/5050/erica-gollub-ida-susser-zena-stein/right-to-know-women%E2%80%99s-choices-depo-provera-and-hiv">The right to know: women’s choices, Depo-Provera and HIV </a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/positive-women-human-rights-defenders">Positive women human rights defenders</a> </div> <div class="field-item odd"> <a href="/5050/aziza-ahmed-jennifer-gatsi-mallet/sterilisation-fight-for-bodily-integrity">Sterilisation: the fight for bodily integrity</a> </div> <div class="field-item even"> <a href="/5050/cecilia-chung/hiv-call-for-solidarity-with-transgender-community">HIV: a call for solidarity with the transgender community </a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/aids-and-adolescents-denying-access-to-health">AIDS and adolescents: denying access to health </a> </div> <div class="field-item even"> <a href="/blog/jessica_reed/hiv_and_women_fighting_hypocrisy">HIV and women: fighting hypocrisy</a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/hiv-and-global-plan-turning-tide-or-wash-out-for-women">HIV and the Global Plan: turning the tide or a wash-out for women?</a> </div> <div class="field-item even"> <a href="/5050/susan-paxton/aids-2014-where-are-women-we-need-to-step-up-pace">AIDS 2014: Where are the women we need to step up the pace? </a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/hiv-witnessing-realisation-of-raw-human-rights">HIV: witnessing the realisation of raw human rights</a> </div> <div class="field-item even"> <a href="/chi-mgbako/international-donors-must-fund-breakthrough-female-controlled-hiv-prevention-gel">International donors must fund female-controlled HIV prevention gel</a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/hiv-of-bombs-and-banks-and-transformation">HIV: of bombs and banks and transformation...</a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/is-there-future-for-women-living-with-hiv">Is there a future for women living with HIV? </a> </div> </div> </div> </fieldset> <div class="field field-rights"> <div class="field-label">Rights:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> CC by NC 4.0 </div> </div> </div> 50.50 50.50 50.50 AIDS, Gender and Human Rights women's human rights women's health gender feminism bodily autonomy Alice Welbourn Wed, 22 Jul 2015 08:33:27 +0000 Alice Welbourn 94609 at https://www.opendemocracy.net The sexual and reproductive health issue you’ve probably never heard of…. https://www.opendemocracy.net/5050/margaret-gyapong-sally-theobald/sexual-and-reproductive-health-issue-you%E2%80%99ve-probably-never-hear <div class="field field-summary"> <div class="field-items"> <div class="field-item odd"> <p>Why is one of the most common gynaecological conditions in sub-Saharan Africa, schistosomiasis, misunderstood, under-researched and under-reported?</p> </div> </div> </div> <p>Throughout Africa approximately 200-220 million people are living with schistosomiasis – also known as bilharzia - and 600 million people are at risk of being infected. Schistosomiasis is a waterborne disease, caused by worms that use aquatic snails as their intermediate hosts, and is particularly common in communities living near freshwater lakes, ponds and streams. Owing to the close association with water for washing, bathing and drinking, infection can be a daily occurrence but it can also occur in seasonal drier environments where people are made more vulnerable through necessary and life giving interactions with infested water. </p><p>Urogenital schistosomiasis - also referred to as female or male genital schistosomiasis (FGS and MGS) -&nbsp; is common, and even universal in some communities. It is thought that between about 100 and 120 million people are suffering from FGS and MGS which is causing damage to their urinary and reproductive systems. Adolescent girls and women with FGS can experience bleeding and stigmatising discharge from the vagina, genital lesions, nodules in the vulva as well as general discomfort and pain during sex. The damage that FGS causes also include sub-fertility, miscarriage and can effect vulnerability to HIV and the Human Papilloma virus.&nbsp; </p> <p><strong>Misunderstood, under-researched and under-reported</strong></p> <p><a href="https://www.bcm.edu/people/view/b1846a47-ffed-11e2-be68-080027880ca6">Peter Hotez</a> estimates that globally there are approximately 67-200 million cases of&nbsp;<em>S. haematobium </em>infection among girls and women.&nbsp;Further estimates that between&nbsp;<a href="http://www.ncbi.nlm.nih.gov/pubmed/10720558" target="_blank">33% and 75% of girls and women with&nbsp;<em>S.&nbsp; haematobium</em>&nbsp;infection also suffer from FGS</a>&nbsp;in their lower genital tract would indicate that between 20 million and 150 million girls are affected, possibly making it one of the most common gynaecological conditions in sub-Saharan Africa. But unfortunately it is misunderstood, under-researched and under-reported to the extent that we have little concrete information on prevalence in different countries, inadequate diagnostic systems, and little guidance on how to prevent, manage and treat it.</p> <p>We know that FGS is estimated to reduce a woman’s fertility by up to 75%. The links between FGS and HIV are also well established. <a href="http://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2809%2961111-9/abstract">Stoever and colleagues</a> argue that up to 75% of girls and women infected with FGS develop often irreversible lesions in the vulva, vagina, cervix, and uterus, creating a lasting entry point for HIV. Their appraisal of <a href="http://www.ncbi.nlm.nih.gov/pubmed/16470124">Eryun Kjetland’s</a> research in Zimbabwe showed that women with FGS had a threefold increased risk of having HIV. In a recent review of the evidence <a href="http://journals.plos.org/plosntds/article?id=10.1371/journal.pntd.0001396">Pamela Mbabazi and colleagues</a> argue that: </p> <p><em>“Studies support the hypothesis that urogenital schistosomiasis in women and men constitutes a significant risk factor for HIV acquisition due both to local genital tract and global immunological effects.” </em></p> <p>Hotez believes that preventing female genital schistosomiasis in sexually active women throughout many rural areas of sub-Saharan Africa could have a significant effect on HIV transmission.</p> <p><strong>The situation in Ghana</strong></p> <p>In Ghana schistosomiasis increased with the development of the Upper Volta Dam. The Ministry of Health’s Neglected Tropical Disease Programme has a mandate to tackle schistosomiasis, which it does through the distribution of the medicine praziquantel through schools, community programmes, and health centres. But detailed clinical research on urogenital schistosomiasis in Ghana is limited. In 2011 a survey conducted by <a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3090093/">Yirenya-Tawiah et al </a>&nbsp;to determine the prevalence of FGS in people that live near rivers in the Volta Basin calculated prevalence at 10.6% (42/395). Their study also looked at the problems that women with FGS were experiencing. Vaginal discharge and itching were the most frequently cited reproductive health issue, other symptoms included lower abdominal pain, irregular menstruation, post-coital bleeding, pain during and after sex, miscarriage and infertility. </p> <p><strong>Why hasn’t more been done?</strong></p> <p>Given the number of people affected, and its harmful effects, it is astonishing that there hasn’t been more of a focus on this urogenital schistosomiasis before. Diseases that affect the poorest and the most marginalised tend not to be high on the agendas of policy makers. If you couple this with the fact that tackling urogenital schistosomiasis means discussing intimate issues such as sexuality and stigmatised areas of health such as infertility the reluctance to deal with the issue is clearer. Nonetheless such dialogue is needed to determine the full extent of the problem on-the-ground.</p> <p>In Ghana we can see promising signs that there is an openness to tackling urogenital schistosomiasis. But we can foresee some challenges in taking this work forward. The Neglected Tropical Disease programme receives funding from the government (primarily for salaries), and from donors including USAID (in part via technical support channelled through FHI 360, the Volta River Authority and Sightsavers). This is often linked to donor priorities and as yet no donors are championing FGS. Donor norms sometimes require systematic reviews of the evidence prior to action. In this case the need is arguably great although the evidence – from Ghana at least – is limited.<strong> </strong>Other major challenges are the up hill task of integrating FGS into the public health system and getting enough praziquantel tablets to cater for all endemic communities. This can range even to the provision of treatment to pre-school-aged children where first signs of FGS can be found.</p> <p>Health workers at all levels - from district health officers, to front line health workers such as community health workers and volunteers - are often over stretched and juggling multiple responsibilities. FGS and it multiple manifestations is one more ball to keep in the air. Furthermore action in this area would mean that different areas of the health sector would need to work together in a concerted fashion which is currently lacking. A call for greater cross-sectoral action is very clearly needed.</p> <p>FGS is potentially a sensitive, private, and possibly stigmatising condition and messaging needs to be geared to the realities of women’s gendered experiences. This requires in-depth research to explore the context and community discourse surrounding FGS symptoms and the development of appropriate referral and treatment strategies that are accessible to all women and girls regardless of where they live or how much money or resources they can access. In so doing, strengthening the surveillance and tailored interventions of reproductive health services is something we should all welcome.&nbsp; </p> <p><strong>A future agenda for action</strong></p> <p>In January an <a href="http://fgsworkshop.org/about/">International Scientific Workshop on Neglected Tropical Diseases</a> brought together world leaders in the field of schistosomiasis, HIV and paediatrics –with a view to keeping a spotlight on urogenital schistosomiasis in Ghana. This will include: </p> <p>- Bringing different communities together for action<strong>: </strong>Engaging all directors of health services, including the Public Health, Family Health (Reproductive Health) and Institutional Care divisions of the Ghana Health Services in the country through presentations and dialogue. Developing joint action so that maternal, sexual and reproductive health and HIV services have the skill set to prevent, diagnose and treat FGS. </p> <p>- Training<strong>: </strong>Advocating for the inclusion of FGS in training sessions at national, regional, district and community levels including in in-service training and refresher trainings for health care workers.</p> <p>- Getting FGS on the radar<strong>: </strong>Ensuring FGS is on the radar of relevant health staff such as clinicians, public health officers, obstetricians and gynecology consultants, nurses and community health workers.</p> <p>- Action at the community level<strong>:</strong> Conducting research to explore how women understand the symptoms of FGS, who they consult and their treatment seeking pathways. Developing appropriate community messaging and engagement strategies through women’s groups, queen mothers, Traditional Birth Attendants and networks of Community Drug Distributors and community health workers to maximise appropriate referral, identification and treatment. </p> <p class="ListParagraph">- Starting treatment younger<strong>:</strong> Periodic and regular treatment with praziquantel from when children are first infected should prevent the development of genital lesions due to urogenital schistosomiasis. But at the moment most praziquantel treatment programmes are focussed on school-aged children and there may be a need to start even earlier than this and make sure people of reproductive age get the care that they need.</p> <p>- Making available diagnostics, surveillance tools and resources for management of urogenital schistosomiasis<strong>:</strong> Given how little we know about the illness this will include working with counterparts in other countries to share learning.</p> <p>- Intensifying multi-sectoral collaboration<strong>: </strong>For example working with the Ministry of Water Resources, Works and Housing, The Ghana AIDS Commission and the education sector. </p> <p>We hope that those working on health in other similarly affected countries will take up the challenge, and that donors can be persuaded to investing more in investigating this neglected issue which has the potential to touch many lives.</p> <p><em>The following people also contributed to this article: Benjamin Marfo, Mike Yaw Osei-Atweneboano, Kate Hawkins, Sheila Addei, Alexander Adjei, Adriana Opong, Russell Stothard and Samantha Page.</em></p> <p>&nbsp;</p> <p>&nbsp;</p> <p>&nbsp;</p><fieldset class="fieldgroup group-sideboxs"><legend>Sideboxes</legend><div class="field field-related-stories"> <div class="field-label">Related stories:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> <a href="/5050/tooni-akanni/confronting-ebola-in-liberia-gendered-realities-0">Confronting Ebola in Liberia: the gendered realities</a> </div> <div class="field-item even"> <a href="/5050/jessica-horn-leah-teklemariam/panzi-hospital-critical-pulse-for-justice-peace-and-health">Panzi hospital: a critical pulse for justice, peace and health</a> </div> <div class="field-item odd"> <a href="/5050/ida-susser/microbicide-success-feminism-is-essential-to-good-science">A microbicide success: feminism is essential to good science</a> </div> <div class="field-item even"> <a href="/5050/jessica-horn-simidele-dosekun/feminist-africa-putting-africa%E2%80%99s-feminist-thinking-on-intellectua">Feminist Africa: putting Africa’s feminist thinking on the intellectual map</a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/is-there-future-for-women-living-with-hiv">Is there a future for women living with HIV? </a> </div> </div> </div> </fieldset> <div class="field field-country"> <div class="field-label"> Country or region:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> Ghana </div> </div> </div> <div class="field field-rights"> <div class="field-label">Rights:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> CC by NC 4.0 </div> </div> </div> 50.50 50.50 Ghana 50.50 AIDS, Gender and Human Rights 50.50 Our Africa 50.50 Editor's Pick women's health gendered poverty Sally Theobald Margaret Gyapong Mon, 06 Jul 2015 06:02:09 +0000 Margaret Gyapong and Sally Theobald 94078 at https://www.opendemocracy.net "I am one of those foreigners": living with HIV in the UK https://www.opendemocracy.net/5050/silvia-petretti/i-am-one-of-those-foreigners-living-with-hiv-in-uk <div class="field field-summary"> <div class="field-items"> <div class="field-item odd"> <p>HIV is easily treatable with pills. But there are no pills for stigma. Stigma grows on the ignorance behind the statement by UKIP's leader Nigel Farage. There is no substance behind his words.</p> </div> </div> </div> <p>The <a href="https://www.youtube.com/watch?v=r1tHvf3lBB4">statement</a> by Ukip's leader Nigel Farage that the majority of people living with HIV in the UK are foreigners, who come here to access free NHS treatment, and who should not be let in, sends shivers down my spine. I was born in Italy, I moved to the UK in the late 80’s and happened to be diagnosed with HIV in 1997. </p> <p>I am one of those foreigners. </p> <p>However I didn’t come to London because I had heard of the NHS. At 21 I couldn’t care less, as most young people I never thought my health could fail. I came on a short course to learn English, and immediately fell in love with this city: I fell in love with the mix of people and cultures, with the endless choice of inspiring music and art, with the opportunity to study things&nbsp; that were new, and exciting for me. I went to University in London, at the <a href="http://www.soas.ac.uk/">School of Oriental and African Study</a>, and had the fortune of studying and researching the richness of <a href="http://www.britishmuseum.org/whats_on/past_exhibitions/2010/archive_kingdom_of_ife.aspx">Yoruba Arts</a> and culture; this would have never been possible in my country. </p> <p>When I became HIV positive, I also discovered that this country had one of the best healthcare provision one could expect. My great healthcare included the medical support of doctors and nurses, as well as access to social and emotional support of other people living with HIV through the self-help support groups provided by Positively Women, now known as <a href="http://positivelyuk.org/">Positively UK.</a> Peer support was crucial because it allowed me to deal with the difficult emotions attached to HIV, especially the profound sense of fear and shame, the low self-esteem caused by the internalisation of <a href="https://hivpolicyspeakup.wordpress.com/2009/06/17/edwin-cameron-on-stigma/">society’s stigma</a> towards HIV, which is perhaps most akin to how people used to be made to feel by society about divorce or having a child ‘out of wedlock’. </p><p>Living with HIV has not been easy, and I have encountered judgment and rejection. However, through the care and support I received I was enabled to remain extremely healthy, get a Masters degree, work, pay taxes, fall in love with my partner, live a meaningful life, and contribute to wider society. </p><p>&nbsp;I feel very strongly that people living with HIV should be treated with dignity and respect so that we can work, have families and contribute to our communities. This is so important to me that I decided to work for Positively UK, the organisation that had had such an impact on my life when I was diagnosed HIV positive. I have worked at Positively UK for 15 years, and I now lead the organisation as Deputy CEO. In my long experience of supporting others with HIV, I have learnt that what affects us most deeply are the negative attitudes and judgment from society. The virus is easily treatable, with just a pill or two a day. But there are no pills for stigma. Stigma around the world grows on ignorance, such as the ignorance behind Farage’s statement. There is no substance behind his words. The National AIDS Trust Report <a href="http://www.nat.org.uk/media/Files/Publications/Oc-2008-The-Myth-of-HIV-Health-Tourism.pdf">The Myth of HIV Health Tourism</a> provides strong evidence that the vast majority of foreigners don’t come to the UK to use health services, but we come here to study, to work, sometimes we escape from countries in war or homophobic violence. We come here to get a better life, work, and hopefully be good citizens. </p> <p>Mr. Farage’s statement against migrants living with HIV was first uttered at the end of last year, and was <a href="http://www.ukcab.net/2014/10/uk-cab-statement-on-farage-proposed-ban-of-hiv-positive-migrants/">condemned by both the UK Community Advisory Board - </a>UK's largest network of HIV treatment advocates and people living with HIV, as well as by the <a href="http://www.bhiva.org/BHIVA-statement-in-response-Nigel-Farage.aspx">British HIV Association, the association of HIV clinicians</a>. It is vital that there is a strong collective front against those demagogic lies. </p> <p>What is incredibly frightening is that those lies are growing on a backdrop of media manipulation, violence, and silencing directed towards dissident voices. </p> <p>At the end of last month, a group of activists, including HIV activists, conducted a peaceful demonstration/performance at Mr. Farage’s local pub, in Kent : “<a href="https://www.opendemocracy.net/ourkingdom/ray-malone/what-really-happened-with-farage-that-pub-and-beyond-ukip-cabaret">Beyond UKIP Diversity Cabaret</a>”. The event aimed peacefully to draw the attention of Mr. Farage and his supporters to the beauty of diversity. “Beyond UKIP Diversity Cabaret” included breast-feeding mothers (as Mr. Farage has condemned women publicly breastfeeding as ostentatious), language classes in the various corners of the pub, an HIV awareness session, and a speech by a holocaust survivor <a href="http://www.independent.co.uk/news/world/europe/the-day-we-left-hitler-behind-survivors-of-the-kindertransport-tell-their-stories-8983603.html">Ruth Barnett</a>. Mr. Farage was actually in the pub next door, and the activists and performers moved to his pub and approached him while dancing a conga, singing <a href="https://www.youtube.com/watch?v=eBpYgpF1bqQ">‘We Are Family’</a> (not really in the top ten of threatening activities). </p> <p>Mr. Farage left quickly, and his savvy media entourage spinned the event, by claiming that he was with his teenage children who were frightened by the pantomime. No pictures of the children have been seen anywhere, and this has not been confirmed by any independent witness. Anyway it was clear that mainstream media would be able to manipulate the events in a way that was far from factual or truthful.&nbsp; </p> <p>What followed was even scarier. A few days after the event, activists involved in the “Beyond UKIP Diversity Cabaret” were meeting to debrief in the offices of an HIV organisation and were <a href="https://stuartsorensen.wordpress.com/2015/04/03/biffers-bust-into-beyond-ukip-cabaret-meeting/">attacked by a group of fascist thugs</a> in paramilitary uniforms from the far right group, Britain First, threatening and banging on the door. Luckily the activists were rescued by the police. Watching the video that Britain First immediately posted on the internet with the title: UKIP ATTACKERS GET THEIR COMEUPPANCE! the first thing that comes to my mind is my parents’ direct tales of the advent of fascism in Italy in the 1930s:&nbsp; all of a sudden you could be threatened and beaten up by ‘Black Shirts’, for defending workers’ rights or Jewish friends.&nbsp; </p> <p>History has taught us that the first step to make this violence possible is to construct our neighbours as ‘others’, as ‘foreigners’, as ‘those with HIV’, and forget what we have in common and what unites us as human beings. </p> <p>What sickens me (but doesn’t surprise me) is that Mr. Farage aims at the most vulnerable, for example people living with HIV. Many of us still live in silence and fear because of the judgment and repercussions of our HIV status being known. For example, <a href="https://hivpolicyspeakup.wordpress.com/2012/06/27/is-somebody-taking-notice-of-the-links-between-gender-based-violence-and-hiv/">women living with HIV are at higher risk of gender-based violence</a> compared to women who have not been diagnosed with the virus. </p> <p>By singling out HIV from all the other illnesses and conditions, Mr. Farage reinforces the idea that among all illnesses this is the most undesirable, the most dirty, and somehow a threat from which the UK needs to be protected. His words are inhumane and blind to the reality that people living with HIV, whether they were born here, or arrived here like me because of the many turns and twists of life, are not a threat or a drain on society. </p><p>We are human, we get up, we eat, we go to work, we care hugely for one another, we have families. Nobody, with any illness, may it be diabetes, a heart condition, cancer or HIV should be treated unkindly and without respect, dignity, and simple human compassion. As my friend and fellow activist&nbsp; Bisi Alimi said &nbsp;“<a href="http://www.independent.co.uk/life-style/health-and-families/health-news/hivpositive-man-slams-nigel-farage-for-deeply-offensive-remarks-10155006.html">That poor people and rich people can access the same kind of healthcare together is something that British people should be proud of”</a>.</p> <p><strong><em>Read more articles on 50.50's platform</em> <a href="https://opendemocracy.net/5050/5050-aids-gender-and-human-rights">AIDS,Gender and Human Rights </a></strong></p><fieldset class="fieldgroup group-sideboxs"><legend>Sideboxes</legend><div class="field field-related-stories"> <div class="field-label">Related stories:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> <a href="/5050/alice-welbourn/hiv-witnessing-realisation-of-raw-human-rights">HIV: witnessing the realisation of raw human rights</a> </div> <div class="field-item even"> <a href="/5050/martha-tholanah/hiv-disclosure-changing-ourselves-changing-others">HIV disclosure: changing ourselves, changing others </a> </div> <div class="field-item odd"> <a href="/5050/cecilia-chung/hiv-call-for-solidarity-with-transgender-community">HIV: a call for solidarity with the transgender community </a> </div> <div class="field-item even"> <a href="/5050/silvia-petretti/hiv-both-cause-and-consequence-of-violence-against-women">HIV: both the cause and the consequence of violence against women</a> </div> <div class="field-item odd"> <a href="/5050/andrea-von-lieven/hiv-nothing-about-us-without-us">HIV: nothing about us, without us</a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/end-to-aids-not-through-medication-alone">An end to AIDS?: Not through medication alone</a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/aids-2014-conference-stepping-up-pace-and-still-on-wrong-path">AIDS 2014 Conference: stepping up the pace and still on the wrong path </a> </div> <div class="field-item even"> <a href="/5050/susan-paxton/aids-2014-where-are-women-we-need-to-step-up-pace">AIDS 2014: Where are the women we need to step up the pace? </a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/is-there-future-for-women-living-with-hiv">Is there a future for women living with HIV? </a> </div> <div class="field-item even"> <a href="/5050/ida-susser-zena-stein/bioinsecurity-and-hivaids">Bio-insecurity and HIV/AIDS </a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/absence-of-evidence-does-not-mean-evidence-of-absence">Absence of evidence does not mean evidence of absence</a> </div> <div class="field-item even"> <a href="/5050/maria-de-bruyn/hiv-what-kind-of-evidence-counts">HIV: what kind of evidence counts ?</a> </div> <div class="field-item odd"> <a href="/5050/ida-susser/hiv-fight-for-trade-related-intellectual-property-regulations">HIV: the fight for trade related intellectual property regulations</a> </div> <div class="field-item even"> <a href="/5050/silvia-petretti/women-who-use-drugs-resistance-and-resilience-in-face-of-hiv">Women who use drugs: resistance and resilience in the face of HIV</a> </div> </div> </div> </fieldset> <div class="field field-country"> <div class="field-label"> Country or region:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> UK </div> </div> </div> <div class="field field-topics"> <div class="field-label">Topics:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> Civil society </div> </div> </div> 50.50 50.50 UK Civil society Continuum of Violence 50.50 AIDS, Gender and Human Rights 50.50 People on the Move 50.50 Editor's Pick 50.50 Voices for Change women's movements women's human rights violence against women gendered migration 50.50 newsletter Silvia Petretti Wed, 08 Apr 2015 08:03:27 +0000 Silvia Petretti 91850 at https://www.opendemocracy.net Women living with HIV: a matter of safety and respect https://www.opendemocracy.net/5050/bev-wilson/women-living-with-hiv-matter-of-safety-and-respect <div class="field field-summary"> <div class="field-items"> <div class="field-item odd"> <p>Last month the results of a global survey on women living with HIV were published. The survey was designed and conducted by women, and commissioned by the World Health Organisation. Will the findings be acted upon?&nbsp; </p> </div> </div> </div> <p>In 2014 the World Health Organisation commissioned the largest international survey to date on the sexual and reproductive health and human rights of women living with HIV. The survey was designed, led and conducted by women living with HIV.&nbsp; Last month the global survey was published: <a href="http://salamandertrust.net/resources/BuildingASafeHouseOnFirmGroundFINALreport190115.pdf">Building A Safe House On Firm Ground</a>.&nbsp; </p> <p>I live in Canada in a small rural setting, and I have been living with HIV for many years. The survey calls for "safety, support and respect for all women at all times".&nbsp; It is my hope that readers examine the survey in its <a href="http://salamandertrust.net/resources/BuildingASafeHouseOnFirmGroundFINALreport190115.pdf">entirety</a>. </p> <p>A total of 832 women from 94 countries, aged 15-72, with another 113 women in focus groups from 7 countries took part in the survey. Violeta Ross (Bolivia) expressed how <em>"This consultation means for me, the opportunity to learn from one and other. Women living with HIV are the best positioned for the design of sexual and reproductive health <a href="http://salamandertrust.net/resources/GlobalSurveyReportLaunchJan2015FINAL.pdf">policies</a>".</em><strong><em> <br /></em></strong></p> <p>The single most prominent finding of the survey was how women living with HIV experience high rates of violence, on a continuum throughout the life cycle: 89% of the respondents reported experiencing or fearing gender-based violence, before, during and/or after HIV <a href="http://salamandertrust.net/resources/GlobalSurveyReportLaunchJan2015FINAL.pdf">diagnosis</a>. </p> <p>Violence was described as physical, psychological and/or financial, with an HIV diagnosis or disclosure acting as a trigger for violence at times. Over 80% of respondents reported experiences of depression, shame and feelings of rejection. Over 75% reported insomnia and difficulty sleeping, self-blame, very low self-esteem, loneliness, body image issues, or anxiety, fear and panic attacks, whether before, or as a direct result of, or after <a href="http://salamandertrust.net/resources/GlobalSurveyReportLaunchJan2015FINAL.pdf">diagnosis</a>. </p> <p>Poverty ties in with violence, along with gender inequality. Many women with HIV come from diverse backgrounds, such as drug use, sex work, being lesbian or transgender. Women are often in relationships where they do not have the financial means to leave and are reliant on their partners, placing them in an unequal power dynamic and open to further abuse and blackmail. </p> <p>The survey reveals the way in which the lack of human rights-based approaches to women's services contributes to mental health issues, lack of satisfying sex lives, and lack of sexual and reproductive rights. All women with HIV have the right to achieving their sexual and reproductive rights as a fundamental part of being human. The survey also highlights the importance of women needing to achieve their own rights in all these areas in order for them adequately to support their children and partners – which women with HIV are very much wanting to do. </p> <p>The report strongly recommends the meaningful involvement of women living with HIV as active participants in all plans and research which affects them.&nbsp; </p> <p>As Sophie Strachan of the UNAIDS Dialogue Platform and the Global Coalition of Women and AIDS explained, <em>“The main importance of this consultation is that WHO hear and take up our recommendations, listen to our voices (as experts) to hear the needs of women living with HIV and include peer led support/services in their guidelines. We need gender specific policies to ensure the rights of women in all our diversities are <a href="http://salamandertrust.net/resources/GlobalSurveyReportLaunchJan2015FINAL.pdf">met</a>."</em> </p> <p>Gender-based violence against women living with HIV is a world-wide phenomenon. In a Canadian context it takes place on a continuum from polite rejections, discrimination and regular experiences of being stigmatized, to more overt forms of violence including physical assault, threats of violence during disclosure of their HIV status or with partners who use the secret of “shame” of their HIV status to control women and keep them from leaving a relationship. </p> <p><a href="http://www.phac-aspc.gc.ca/aids-sida/publication/epi/2010/5-eng.php">Women</a> living with HIV in Canada often have children and cannot find adequate child care. So they cannot spend time furthering their education and are therefore trapped in a poverty cycle which is often impossible to break. This further exacerbates the potential for abuse and <a href="http://www.catie.ca/en/catienews/2013-09-03/domestic-violence-against-hiv-positive-women-and-its-impact-their-health">violence</a>. </p> <p>Indigenous women in Canada represent a small percentage of the overall population, but are over-represented in the number of women living with HIV in Canada, as are women of colour who have emigrated from other regions of the <a href="http://www.cwhn.ca/node/39483">world</a><strong><em>. </em></strong>Women living with HIV in Canada often live in isolation, keeping their HIV status private for fear of backlash from the community and to protect their children from stigma and discrimination.&nbsp; Living in <a href="http://www.cdnaids.ca/womenandhivaidssupportissues">isolation</a> leads to decisions to not seek treatment, not seek care and support to deal with stress and anxiety, and not take prescribed medication on a regular basis, if at all. </p> <p>It may come as a surprise to learn that Canada has one of the highest rates of criminalization of HIV for non-disclosure in the <a href="https://www.opendemocracy.net/5050/louise-binder/criminal-law-hiv-and-violence-against-women">world</a>. This needs to be addressed to alleviate fear and silence about HIV. Canada demands that other countries adhere to basic human rights practices, yet at home we do not. Fortunately we have a strong organization, the <a href="http://www.aidslaw.ca/site/">Canadian HIV/AIDS Legal Network</a>, which lobbies for de-criminalization of HIV and changes in our government's position on this topic. Criminalization of HIV in fact serves to increase HIV transmission. With the onus on the HIV positive person to disclose their status to sex partners or risk prosecution, individuals assume and expect that everyone living with HIV will disclose, and they rely on this and do not ask questions, do not insist on the use of condoms or any safe sex practices. This causes a false sense of security for people on the dating scene, and indirectly creates a situation where people living with HIV are used as part of screening mechanisms for safe sex practices, with the rationale that a person can rely on prosecution if and when a person does not disclose their status. It places the burden of disclosure on the person living with HIV, and does not emphasize the need for each individual to take responsibility for their own sexual health and well being. Laws will not protect people from contracting HIV, personal responsibity for oneself will.&nbsp; </p> <p>Two recent court rulings in <a href="http://www.thebarrieexaminer.com/2013/08/16/jennifer-murphy-found-guilty-of-one-count-aggravated-sexual-assault-but-not-guilty-on-two-other-counts">2013</a> and <a href="http://www.cbc.ca/news/canada/hamilton/news/april-bullock-charged-with-sexual-assault-accused-of-hiding-hiv-status-1.2711127">2014</a> against women in Canada for non-disclosure of their HIV status highlight how the law lags far behind <a href="http://www.catie.ca/en/pif/fall-2014/insight-hiv-transmission-risk-when-viral-load-undetectable-and-no-condom-used">science</a> in relation to the virtual impossibility of transmitting HIV if one has an undetectable viral <a href="http://www.thebarrieexaminer.com/2013/08/16/jennifer-murphy-found-guilty-of-one-count-aggravated-sexual-assault-but-not-guilty-on-two-other-counts">load</a>. There is a critical need to decriminalize HIV; there is also a need for everyone to take responsibility for their own sexual health.&nbsp; </p> <p>Services to support women living with HIV in Canada exist in a splintered fashion and vary from province to province.&nbsp; In Quebec I have had many conversations with women living with HIV, but there seems to be no clear or definitive answers about why women are so reluctant to engage in services. Service providers do not have the solutions around engaging women in services either. From my own point of view I would like to see more concrete and&nbsp; practical services which will enable us to learn new job skills to integrate back into the work place. </p> <p>A human rights focus is needed as much in Canada as it is in the so-called “developing” world. The many components on the continuum of violence towards women living with HIV need to be addressed, including financial inequality, need for adequate housing, job security and human rights-based approaches to employment and care. </p> <p>There is an obvious need for a national cohesive voice for women living with HIV in Canada. What needs to take place here in Canada, as everywhere, is a serious attempt to practice the meaningful involvement of women living with HIV in the full cycle of all aspects of planning, programme implementation and evaluation. We are the experts, and we alone can identify what our needs are and how they can be addressed. This was clearly demonstrated in the Salamander Trust <a href="http://salamandertrust.net/resources/BuildingASafeHouseOnFirmGroundFINALreport190115.pdf">survey</a>, which has produced the most meaningful and authentic results I have read to date. </p> <p>World Health Organisation (WHO) guidelines now need to be updated to reflect both the findings of the report, and to reflect recent political and biomedical aspects of the HIV response.&nbsp; </p> <p><em><a href="http://salamandertrust.net/resources/BuildingASafeHouseOnFirmGroundFINALreport190115.pdf">Building A Safe House On Firm Ground</a>.&nbsp; Principal author, The Salamander Trust, together with ATHENA Network, the Transgender Law Center, the International Community of Women living with AIDS Zimbabwe and Asia-Pacific chapters and GNP+. The survey was commissioned by the World Health Organization.</em></p><p><strong>Read more articles on 50.50's long running platform for critical perspectives on <a href="https://www.opendemocracy.net/5050/5050-aids-gender-and-human-rights">AIDS, Gender and Human Rights</a></strong><em><br /></em></p> <p>&nbsp;</p> <p>&nbsp;</p><fieldset class="fieldgroup group-sideboxs"><legend>Sideboxes</legend><div class="field field-related-stories"> <div class="field-label">Related stories:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> <a href="/5050/alice-welbourn/hiv-witnessing-realisation-of-raw-human-rights">HIV: witnessing the realisation of raw human rights</a> </div> <div class="field-item even"> <a href="/5050/martha-tholanah/hiv-disclosure-changing-ourselves-changing-others">HIV disclosure: changing ourselves, changing others </a> </div> <div class="field-item odd"> <a href="/5050/louise-binder/criminal-law-hiv-and-violence-against-women">Criminal law: HIV and violence against women</a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn-louise-binder/compulsion-versus-compassion-hiv-treatment-for-women-and-children">Compulsion versus compassion: HIV treatment for women and children </a> </div> <div class="field-item odd"> <a href="/5050/susan-paxton/positive-and-pregnant-in-asia-how-dare-you">Positive and pregnant in Asia - How dare you</a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/end-to-aids-not-through-medication-alone">An end to AIDS?: Not through medication alone</a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/aids-2014-conference-stepping-up-pace-and-still-on-wrong-path">AIDS 2014 Conference: stepping up the pace and still on the wrong path </a> </div> <div class="field-item even"> <a href="/5050/andrea-von-lieven/hiv-nothing-about-us-without-us">HIV: nothing about us, without us</a> </div> <div class="field-item odd"> <a href="/5050/maria-de-bruyn/hiv-what-kind-of-evidence-counts">HIV: what kind of evidence counts ?</a> </div> <div class="field-item even"> <a href="/5050/erica-gollub-ida-susser-zena-stein/right-to-know-women%E2%80%99s-choices-depo-provera-and-hiv">The right to know: women’s choices, Depo-Provera and HIV </a> </div> <div class="field-item odd"> <a href="/5050/ida-susser-zena-stein/bioinsecurity-and-hivaids">Bio-insecurity and HIV/AIDS </a> </div> <div class="field-item even"> <a href="/5050/nell-osborne/against-coerced-sterilisation-resounding-victory-in-namibia">Against coerced sterilisation: a resounding victory in Namibia</a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/absence-of-evidence-does-not-mean-evidence-of-absence">Absence of evidence does not mean evidence of absence</a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/hiv-free-generation-human-sciences-vs-plumbing">An HIV-free generation: human sciences vs plumbing </a> </div> </div> </div> </fieldset> 50.50 50.50 Continuum of Violence 50.50 Women's Movement Building 50.50 AIDS, Gender and Human Rights 50.50 Editor's Pick women's human rights women's health violence against women gender justice bodily autonomy 50.50 newsletter Bev Wilson Mon, 16 Feb 2015 08:00:33 +0000 Bev Wilson 90473 at https://www.opendemocracy.net HIV: witnessing the realisation of raw human rights https://www.opendemocracy.net/5050/alice-welbourn/hiv-witnessing-realisation-of-raw-human-rights <div class="field field-summary"> <div class="field-items"> <div class="field-item odd"> <p>Fear of HIV disclosure and subsequent violent reactions are experienced globally. We know that rights-based approaches can create resilience and hope. So where is the&nbsp;political courage and will to make them happen?</p> </div> </div> </div> <p>As we end 2014, I reflect on three basic Rs in the context of HIV: namely resources, rights and resilience. UNAIDS has just published its 2014 World AIDS Day report, entitled “Fast <a href="http://www.unaids.org/sites/default/files/media_asset/JC2686_WAD2014report_en.pdf">Track</a>: Ending the AIDS Epidemic by 2030”. AIDS-Free <a href="http://www.aidsfreeworld.org/">World</a> Co-Director, Stephen Lewis, points out that it can be hard work keeping up with UNAIDS’ ever more ambitious targets. UNAIDS’ mathematical modelling proposes “959595”: that by 2030 there should be 95% of the world tested for HIV, 95% of those who test positive put on antiretroviral therapy (ARVs) and 95% of these with an undetectable viral load (which means we cannot pass HIV to anyone else).&nbsp; Lewis views such “preoccupation with <a href="http://www.aidsfreeworld.org/Publications-Multimedia/Video-Commentaries/2014/November/Week-in-Review-56.aspx">statistical</a> data” with some scepticism. Given last week’s report of low <a href="http://www.bbc.com/news/health-30348499">UK</a> medication adherence levels amongst people with various conditions, many would argue that UNAIDS’ targets are overly ambitious. But that aside, what really struck me most in the report was:</p><p>“Community services will become a larger part of the AIDS response and UNAIDS estimates that resources for community mobilization will increase from 1% of global resource needs in 2014 (US$ 216 million) to 3.6% in 2020 and 4% in 2030. This includes antiretroviral therapy and HIV testing and counselling. Community system strengthening aims to bolster the role of key populations, communities and community-based organizations in the design, delivery, monitoring and evaluation of services, activities and <a href="http://www.unaids.org/sites/default/files/media_asset/JC2686_WAD2014report_en.pdf">programmes</a>.”</p><p>I had to read that paragraph several times because I am naively incredulous - that after all our years of <a href="http://www.opendemocracy.net/5050/aids-2010-rights-here-right-now">campaigning</a> for community involvement - such a small percentage of the AIDS funding pot is spent on community initiatives, including testing, counselling and ARV provision – most of which take place in health centres anyway, not in communities. By my maths, with 35 million of us in the world with HIV, that is currently an average of $6.17 spent on each of us in terms of community resources. And the plan is to quadruple that by 2030 to 4% at $24.69.&nbsp; So where will the other 96% of AIDS funding still go?</p><p>No wonder civil society is feeling extremely ill-resourced.</p><p>I am not alone in continuing to emphasise the importance of community-led <a href="http://www.opendemocracy.net/5050/alice-welbourn/gender-politics-of-funding-women-human-rights-defenders">initiatives</a>. At a meeting hosted by Paediatric AIDS Treatment for Africa (<a href="http://www.teampata.org/">PATA</a>) last week, 160 health professionals highlighted the huge need for non-clinical, community education issues, such as parent to child disclosure and ARV adherence amongst adolescents.&nbsp; As I reported in <a href="https://www.opendemocracy.net/5050/alice-welbourn/aids-and-adolescents-denying-access-to-health">July</a>, the group dying from AIDS at 50% increase globally is 10-19 year olds. If paediatric health staff themselves see how lack of community initiatives is hampering their work to support this group, why is there still such a miniscule resource allocation to community initiatives at global strategy level?</p><p>I am just home from one especially resource-poor setting, Dar es Salaam, Tanzania. The largest city in E Africa, 75% of its 4.5 million population has no water or electricity. I was working with <a href="http://pasada.or.tz/BW_SupporttoOrphansandVulnerableChildren.htm">PASADA</a>, supporting Dominique <a href="http://socialfilms.org/">Chadwick</a> train some of clients to make their own films about their lives. Founded in 1989, its dedicated staff now supports 108,000 clients in Dar, most of them extremely poor. Half of those who have tested for HIV in Dar were tested by PASADA. Those who need to be on anti-retroviral (ARV) treatment have to come every month because of drug shortages. This costs clients (and staff) extra time - and money in terms of transport, childcare costs and lost potential income time. By contrast, I get 6 months supplies of ARVs, delivered to my rural door in Britain by Royal <a href="http://www.bbc.com/news/business-30207387">Mail</a>, an immeasurably easier experience.</p><p>The participants whom Dominique is training are all caregivers of children affected by AIDS. Mostly they are grandparents or aunts and uncles. There are far more women than men. Occasionally they are older siblings. Several caregivers and children also have HIV. I met them first last year when observing a two week pilot workshop of “Stepping Stones with <a href="http://steppingstonesfeedback.org/resources/25/SS_PASADA_AIDS2014.pdf">Children</a>”, an adaptation, led by Gill <a href="http://www.salamandertrust.net/index.php/page/Salamander_Associates/">Gordon</a>, of the original long-running Stepping Stones programme which has been recognised to reduce intimate partner violence in many communities from the <a href="http://steppingstonesfeedback.org/resources/28/SS_MRC_Gambia_Evaluation_2002.pdf">Gambia</a> to Fiji, South <a href="http://www.whatworksforwomen.org/chapters/21-Strengthening-the-Enabling-Environment/sections/59-Addressing-Violence-Against-Women/evidence">Africa</a> to Uganda, and beyond to child marriage in communities in India. The pilot of this adaptation last year produced positive preliminary results, confirmed by the stories of the film-training participants, one year on.</p><p>Why “Stepping Stones with Children”? As Simon Yohana, Executive Director and Nelson Chiziza, Stepping Stones Programme Coordinator of PASADA explain, children are especially wise beyond their years in the face of adversity. They grow extremely sensitive antennae, knowing there is some family secret but that they can’t voice it. Meanwhile adults fear that disclosing their own or the child’s HIV status to him or her will shock the child and that they will not keep the secret, thereby stigmatising them all.&nbsp; Adults also find it extremely hard to talk about their own or others’ sexuality. So since children have heard everywhere that AIDS is about sex, adults fear all the more to discuss or disclose the existence of HIV in the family. Thus many children have been tested and are being given ARVs while told that they have anaemia or something else. If children find out what they really have from sources other than their carers, they can feel anger that they have been lied to, or guilt that they are alive whilst their parents or siblings are dead. Or they can blame themselves for their parents’ deaths. Meanwhile their bereft and overwhelmed carers can project their desperation onto the children and, when they are inevitably naughty, children are told: “if you don’t behave, you will grow up like your mother or father!” This is of course a fiercely unjust statement, both for the child who needs to remember its parent with love and whose behaviour is largely caused by anxiety and stress; and for the parent who had no intention <a href="https://www.youtube.com/watch?v=8ju2grqLKjM">whatsoever</a> of passing HIV to its child. Yet the desperate caregiver, often with many small mouths to feed, feels overwhelmed by the situation and resorts to anger and violence against the child.&nbsp; All this can have huge knock-on consequences as children enter adolescence, often resulting in high levels of risk-taking and <a href="http://rojavida.wordpress.com/2014/11/29/the-mtct-term/">abandonment</a> of ARVs. You can hear how this resonates entirely with PATA concerns above.</p><p>The Stepping Stones with Children programme opens up communication and trust between the generations and builds a new-found resilience amongst children and caregivers alike. These new skills enable them to overcome these challenges.</p><p>Our film-training was a five day intensive multi-tasking emotional leap into personal storytelling, scene-setting, filming using flip cameras, directing, sound control, clapper boarding, acting and finally editing, to produce a finished product which gets shown back to the community just before Christmas.&nbsp; The training is now continuing with the 9-14 year olds and next week with the 5-8 year olds. Altogether about five films are planned – two each for the older age groups and one for the 5-8s.</p><p>The two films made by the adult clients reveal deep personal changes for them all. Both stories are composite, rooted deeply in their real lives. In the first, a couple are anxious about whether or not to disclose to their nephew, John, who is taking ARVs and suspects that he has HIV but no-one has told him this. The boy’s older friend, Alex, who knows that he has HIV himself, can see that John suspects something. So then Alex shares his worries about John with his own carers. He says he wants John to be happy like him and know about his own HIV status too. Alex asks his grandparents if they might make use of what they learnt in the training and offer support to John’s aunt and uncle, who are their neighbours. Alex’s grandparents think this is a great idea and agree. </p><p>Alex’s grandparents then visit John’s guardians to say that, whilst of course it is their decision, there are advantages in their having the courage to tell him. When they do, he is of course first shocked but they comfort him and are able to explain how well he is, how good he is at remembering to take his medication and how he will be able to grow up and live a long life and have his own children, HIV-free. In the final scene John now plays happily with his friends.</p><p>The second film is about a man who felt suicidal and very angry with his wife for "giving" him and their children HIV. Yet thankfully through the training they received last year, he has moved on to a new space, from anger, blame and gender-based violence to understanding that this violence inside him is based on fear, anger and need and that he can also create a space inside him to develop acceptance and hope. So his whole family is now much safer than previously - his young daughter and son have chances of better safer futures, his wife and himself also. And his children are more likely to be able to have HIV-free children themselves. ( <em>Links to the films and related materials will be added to this article once they are finalised.)</em></p><p>No doubt there will be many more pitfalls along the way for the actors in both stories, but they all now have skills of more self-reliance and resilience to know how to deal with difficult situations than they did prior to the training.</p><p>I witnessed here this week the realisation of raw human rights, especially of children, in these dramas. I have heard these concerns about disclosure and of violent reactions to HIV voiced repeatedly in many communities around the world. Yet it is very rare to hear their resolution. This is why the proposed increase of community funding to a mere 4% is breathtakingly inadequate.</p><p>We know how to turn these tragedies into rights-based stories of resilience and hope. What we continue to lack is the consistent flow of sustained and <a href="http://awid.org/Library/Watering-the-Leaves-Starving-the-Roots">substantive</a> <a href="http://opendemocracy.net/5050/alice-welbourn/gender-politics-of-funding-women-human-rights-defenders">resources</a> to enable these transformations to happen and continue happening. We don’t pretend that one simple training will turn people’s lives around forever. It took 60 years to get seatbelts accepted or smoking in public places banned in England. Change takes time, sustained political will - and long-term funding. Yet realising human rights isn’t rocket science. What can happen here can happen anywhere - in <a href="https://www.opendemocracy.net/5050/rahila-gupta/what-will-it-take-to-end-violence-against-women-in-uk">England</a> too. With resources, rights-based community initiatives can grow and flourish and from these can stem true, lasting resilience. What we need is the political courage and will to make these three basic Rs happen – to sustain them for the sake of future generations - and for us all. And then - just then - “<a href="http://www.unaids.org/sites/default/files/media_asset/JC2686_WAD2014report_en.pdf">959595</a>” might begin to be a possibility.</p><p><strong><em>Read more articles in openDemocracy <a href="https://www.opendemocracy.net/5050">50.50's</a> series on <a href="https://www.opendemocracy.net/5050/5050-aids-gender-and-human-rights">AIDS, Gender and Human Rights, </a>and in&nbsp;</em></strong><em><span><strong><a href="https://www.opendemocracy.net/5050/16-days-activism-against-gender-based-violence-2014">16 Days: Activism Against Gender-Based Violence 2014</a></strong></span></em></p> <p>&nbsp;</p> <p>&nbsp;</p><fieldset class="fieldgroup group-sideboxs"><legend>Sideboxes</legend><div class="field field-related-stories"> <div class="field-label">Related stories:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> <a href="/5050/alice-welbourn/end-to-aids-not-through-medication-alone">An end to AIDS?: Not through medication alone</a> </div> <div class="field-item even"> <a href="/5050/martha-tholanah/hiv-disclosure-changing-ourselves-changing-others">HIV disclosure: changing ourselves, changing others </a> </div> <div class="field-item odd"> <a href="/5050/ida-susser-zena-stein/bioinsecurity-and-hivaids">Bio-insecurity and HIV/AIDS </a> </div> <div class="field-item even"> <a href="/5050/ida-susser/microbicide-success-feminism-is-essential-to-good-science">A microbicide success: feminism is essential to good science</a> </div> <div class="field-item odd"> <a href="/5050/aziza-ahmed-jm-kirby/preventing-hiv-decriminalisation-of-sex-work">Preventing HIV: the decriminalisation of sex work</a> </div> <div class="field-item even"> <a href="/5050/cecilia-chung/hiv-call-for-solidarity-with-transgender-community">HIV: a call for solidarity with the transgender community </a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/aids-2014-conference-stepping-up-pace-and-still-on-wrong-path">AIDS 2014 Conference: stepping up the pace and still on the wrong path </a> </div> <div class="field-item even"> <a href="/5050/susan-paxton/aids-2014-where-are-women-we-need-to-step-up-pace">AIDS 2014: Where are the women we need to step up the pace? </a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn-louise-binder/compulsion-versus-compassion-hiv-treatment-for-women-and-children">Compulsion versus compassion: HIV treatment for women and children </a> </div> <div class="field-item even"> <a href="/5050/louise-binder/criminal-law-hiv-and-violence-against-women">Criminal law: HIV and violence against women</a> </div> <div class="field-item odd"> <a href="/5050/charlotte-watts/csw-from-global-to-local-extraordinary-opportunity">CSW: from the global to the local - an extraordinary opportunity </a> </div> <div class="field-item even"> <a href="/5050/nell-osborne/against-coerced-sterilisation-resounding-victory-in-namibia">Against coerced sterilisation: a resounding victory in Namibia</a> </div> <div class="field-item odd"> <a href="/5050/louise-binder/no-test-no-arrest-criminal-laws-to-fuel-another-hiv-epidemic">No test, no arrest: criminal laws to fuel another HIV epidemic</a> </div> <div class="field-item even"> <a href="/5050/jennifer-gatsi-mallet-aziza-ahmed-mindy-roseman/are-hospitals-safe-for-women-living-with-hiv">Are hospitals safe for women living with HIV?</a> </div> <div class="field-item odd"> <a href="/5050/baby-rivona-oldri-mukuan/global-mechanism-regional-solution-ending-forced-sterilisation">Global mechanism, regional solution: ending forced sterilisation </a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/is-there-future-for-women-living-with-hiv">Is there a future for women living with HIV? </a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/women-and-post-2015-agenda-are-you-on-board-ark">Women and the post-2015 agenda: are you on board the ark?</a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/gender-politics-of-funding-women-human-rights-defenders">The gender politics of funding women human rights defenders</a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/hiv-free-generation-human-sciences-vs-plumbing">An HIV-free generation: human sciences vs plumbing </a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/hiv-of-bombs-and-banks-and-transformation">HIV: of bombs and banks and transformation...</a> </div> <div class="field-item odd"> <a href="/5050/silvia-petretti/hiv-both-cause-and-consequence-of-violence-against-women">HIV: both the cause and the consequence of violence against women</a> </div> <div class="field-item even"> <a href="/5050/andrea-von-lieven/hiv-nothing-about-us-without-us">HIV: nothing about us, without us</a> </div> <div class="field-item odd"> <a href="/5050/maria-de-bruyn/hiv-what-kind-of-evidence-counts">HIV: what kind of evidence counts ?</a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/hiv-time-for-us-to-put-its-own-house-in-order">HIV: time for the US to put its own house in order ? </a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/aids-and-adolescents-denying-access-to-health">AIDS and adolescents: denying access to health </a> </div> <div class="field-item even"> <a href="/globalization-hiv/uganda_4144.jsp">Uganda: HIV/Aids and the age factor</a> </div> <div class="field-item odd"> <a href="/5050/hajjarah-nagadya/uganda-social-impact-of-hiv-criminal-law-0">Uganda: the social impact of HIV criminal law</a> </div> <div class="field-item even"> <a href="/5050/jessica-horn/avoidable-injustices-way-to-prevent-violence-against-women">Avoidable injustices: the way to prevent violence against women</a> </div> </div> </div> </fieldset> <div class="field field-country"> <div class="field-label"> Country or region:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> Tanzania </div> </div> </div> 50.50 50.50 Tanzania 50.50 AIDS, Gender and Human Rights 50.50 Editor's Pick women's human rights women's health gender justice feminism bodily autonomy 50.50 newsletter Alice Welbourn Tue, 09 Dec 2014 09:45:03 +0000 Alice Welbourn 88630 at https://www.opendemocracy.net Preventing HIV: the decriminalisation of sex work https://www.opendemocracy.net/5050/aziza-ahmed-jm-kirby/preventing-hiv-decriminalisation-of-sex-work <div class="field field-summary"> <div class="field-items"> <div class="field-item odd"> <p>A new bill, together with moves by some police departments in American cities to end the use of condoms as evidence of prostitution, has given hope to activists fighting to reduce the spread of HIV, secure human rights for sex workers, and to decriminalize sex work.</p> </div> </div> </div> <p>At the recent International AIDS <a href="http://www.aids2014.org/">Conference</a>, <em>The Lancet</em> released a special issue on sex work and HIV. Acknowledging that sex workers constitute a disproportionate burden of people with <a href="http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(14)60931-4/fulltext#article_upsell">HIV,</a> Kate Shannon and colleagues modeled various interventions to measure how change in structural determinants of health would impact HIV transmission. Researchers found that the decriminalization of sex work would have the largest impact on the course of HIV epidemics by “averting 33-46% of HIV infections in the next decade.” </p> <p>While sex worker organizations advocated for the decriminalization of sex work <a href="http://papers.ssrn.com/sol3/papers.cfm?abstract_id=2350180">long before</a> the HIV epidemic in the United States, it was HIV that brought new attention to the need for sex workers to access safe sex materials to stop the transmission of HIV and other sexually transmitted infections. Sex workers, epidemiologists and lawyers noted that criminal laws, as well as police practices, played a large role in frustrating the ability of sex workers to access public health education, as well as key tools in preventing the spread of HIV, including condoms. </p> <p>In 2008, sex worker organization <em>Different Avenues</em> published one of the <a href="http://www.dctranscoalition.files.wordpress.com/2010/05/movealongreport.pdf">first reports</a> to document police harassment and abuse of sex workers, and people whom the police profile as sex workers. Researched and authored by community members directly impacted by policing, the report highlighted the seizing of condoms and safe sex materials from people the police suspected to be sex workers, and their use subsequently as evidence in trials in the District of Columbia. </p> <p>Further, the report highlighted the harms of Washington, D.C.’s <a href="http://www.washingtonpost.com/local/dc-politics/districts-prostitution-free-zones-likely-unconstitutional-ags-office-says/2012/01/24/gIQAe3qNOQ_story.html">“prostitution-free zones,”</a> (PFZs), areas in which police have a strengthened ability to force people to leave an area, as well as to stop, search, and arrest people they believe are engaging in prostitution. Similar to initiatives in other cities, the PFZs essentially codified abusive pre-existing tactics the police carry out every day, where they harass, search, and arrest sex workers or individuals they suspect are sex workers, usually under the cover of overbroad anti-loitering or soliciting statutes. This has had a disproportionate impact on people of colour and impoverished people, and particularly on <a href="https://www.opendemocracy.net/5050/cecilia-chung/hiv-call-for-solidarity-with-transgender-community">transgender</a> women of colour, who are frequently profiled as sex workers. </p> <p>The Washington D.C. Council held a <a href="http://www.hrw.org/news/2014/07/10/written-testimony-support-bill-20-760-repeal-prostitution-free-zone-amendment-act-20">hearing</a> on July 9 on a bill introduced by Councilman <a href="http://dccouncil.us/council/david-grosso">David Grosso</a> to repeal the prostitution-free zones. The police department in D.C. did not oppose the bill, and it seems set for approval later this year. The proposed bill, together with moves by some police departments to end the use of condoms as evidence, gives hope to activists fighting to reduce the spread of HIV, secure human rights for sex workers, and to decriminalize sex work. This is true both globally and in the United States, where criminal laws allow for the ongoing harassment, arrest, detainment, and mistreatment of sex workers and people affected by policing of sex work.&nbsp; </p> <p>Since 2008, numerous organizations have also taken up the cause of ending police and prosecutors’ use of condoms as evidence, including (but not limited to) Human Rights Watch, Amnesty International, Streetwise and Safe, Sex Worker Project, Lambda Legal, St. James Infirmary, Best Practices Policy Project, and the Access to Condoms Coalition.&nbsp; Each of the <a href="http://www.hrw.org/news/2012/07/19/us-police-practices-fuel-hiv-epidemic">reports</a> and<a href="http://www.nocondomsasevidence.org/hearing-testimony/"> initiatives</a> spearheaded by these organizations condemned the use of condoms as evidence for impeding HIV interventions. These groups, along with many others, have also <a href="http://www.hrw.org/news/2014/07/10/written-testimony-support-bill-20-760-repeal-prostitution-free-zone-amendment-act-20">spoken</a> out against other discriminatory practices of police, such as the PFZs.&nbsp; For sex workers and their allies carrying condoms is a key tool in preventing the spread of HIV.&nbsp; In turn, when the police harass sex workers and confiscate condoms they undermine efforts to promote safe sex. </p> <p>Starting last spring, the hard work of sex worker organizations and advocates paid off in <a href="http://www.bestpracticespolicy.org/2014/05/13/partial-victory-in-nyc-as-police-chief-limits-use-of-condoms-as-evidence/">New York City</a>, <a href="http://www.sfgate.com/opinion/openforum/article/S-F-no-longer-criminalizes-condoms-4629384.php">San Francisco</a>, and <a href="http://www.citylab.com/crime/2014/06/how-dc-finally-stopped-punishing-sex-workers-for-carrying-condoms/371582/">Washington, D.C</a>., where police departments have moved to stop seizing condoms for use as evidence of prostitution. However, obstacles remain. In 2014, in New York City the efforts of sex worker advocates and their allies resulted in Commissioner Bratton of the New York Police Department (NYPD) announcing that condoms would no longer be used as <a href="http://www.huffingtonpost.com/2014/05/12/nypd-condoms-_n_5310906.html">evidence</a> in prostitution cases. Unfortunately there is a large loophole in this new policy: condoms will still be used as evidence in sex-trafficking cases.&nbsp; This is a continuing challenge where sex work and sex-trafficking are conflated. As stated by the <a href="http://www.nocondomsasevidence.org/2014/05/12/access-to-condoms-coalition-response-to-nypd-announcement/">Access to Condoms Coalition</a>: </p> <p>“Unfortunately,&nbsp;it does not go far enough, and creates a loophole&nbsp;big enough to drive a truck through: police can still continue to&nbsp;use the possession of condoms to justify an arrest,&nbsp;confiscate&nbsp;condoms from sex workers and&nbsp;survivors as “investigatory evidence” where promoting or trafficking is suspected,&nbsp;and confiscate&nbsp;condoms as evidence in promoting and trafficking cases.” </p> <p>Trafficking laws often result in the continued arrest and harassment of sex workers. Further, in some jurisdictions prostitution cases may be treated as trafficking cases. Thus the exception for trafficking may undermine the effort to promote condom use by sex workers. New York-based organizations like <a href="http://www.streetwiseandsafe.org/">Streetwise and Safe</a>, say that they will actively monitor the implementation of the new police policy. </p> <p>Mounting evidence such as that in the Lancet, that increased rights for sex workers contributes significantly to their health and well being, particularly by reducing HIV transmissions, may help sex workers and their allies expand on these new gains. Recent policy shifts on the seizure and use of condoms as evidence, as well as re-evaluations of the prostitution-free zones, point towards new thinking on the part of police about the health and safety of sex workers. However, loopholes in the new policies make clear that sex workers and allies must be vigilant in observing and shaping the implementation of these laws and policies. </p><p><em>This article is part of 50.50's series of critical perspectives on&nbsp;<a href="https://www.opendemocracy.net/5050/womens-movement-building/aids-gender-and-human-rights">AIDS Gender and Human Rights</a>. We published articles daily during the 2014 World AIDS Conference in Melbourne July 20-25</em></p> <p>&nbsp;</p> <p>&nbsp;</p> <p>&nbsp;</p><fieldset class="fieldgroup group-sideboxs"><legend>Sideboxes</legend><div class="field field-related-stories"> <div class="field-label">Related stories:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> <a href="/5050/nada-mustafa-ali/hope-pain-and-patience-hiv-and-sex-workers">Hope, pain and patience: HIV and sex workers</a> </div> <div class="field-item even"> <a href="/5050/parinita-bhattacharjee/sex-work-violence-and-hiv-experience-from-rural-karnataka">Sex work, violence and HIV: experience from rural Karnataka</a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/aids-2014-conference-stepping-up-pace-and-still-on-wrong-path">AIDS 2014 Conference: stepping up the pace and still on the wrong path </a> </div> <div class="field-item even"> <a href="/5050/cecilia-chung/hiv-call-for-solidarity-with-transgender-community">HIV: a call for solidarity with the transgender community </a> </div> </div> </div> </fieldset> 50.50 50.50 50.50 AIDS, Gender and Human Rights 50.50 Highlights women's health 50.50 newsletter J.M. Kirby Aziza Ahmed Mon, 11 Aug 2014 07:12:33 +0000 Aziza Ahmed and J.M. Kirby 85081 at https://www.opendemocracy.net AIDS and adolescents: denying access to health https://www.opendemocracy.net/5050/alice-welbourn/aids-and-adolescents-denying-access-to-health <div class="field field-summary"> <div class="field-items"> <div class="field-item odd"> <p>With a 50% increase in AIDS-related deaths among young people, AIDS is now the second leading cause of their deaths. At the conclusion of the <a href="http://www.aids2014.org/">AIDS 2014 </a>Conference, Alice Welbourn is left wondering whether anything is going to change in the HIV world for young women - and their children<em>.</em></p> </div> </div> </div> <p><em>This is the 10th article in 50.50's <a href="https://www.opendemocracy.net/5050/womens-movement-building/aids-gender-and-human-rights">series on the World AIDS 2014 Conference</a> which concluded in Melbourne, July 25th. <br /></em></p><p>The 13,600 delegates at the 20th International AIDS Conference have all now packed up and gone home. The Melbourne <a href="http://aids2014.org/Default.aspx?pageId=734">Declaration</a> states clearly in two – albeit much contested - paragraphs that gender equality is a critical part of an effective response.&nbsp; At least 50% of the adults with HIV globally are now <a href="http://www.thelancet.com/journals/lancet/article/PIIS0140673614608448/table?tableid=tbl3&amp;tableidtype=table_id&amp;sectionType=red">women</a>, many of whom acquired HIV during their teens. Surely the tide is now turning? Well only 1 out of the 8 new International AIDS Society board members are <a href="http://www.iasociety.org/Web/WebContent/File/IAS_GC_Elections_Results_2014.pdf">female</a>. Only around 10% of conference delegates had signed the Declaration by Friday afternoon. Only 2 out of 31 sessions on drug use in the conference addressed women’s <a href="https://www.opendemocracy.net/5050/silvia-petretti/women-who-use-drugs-resistance-and-resilience-in-face-of-hiv">rights</a> issues. HIV-prevention research funding has <a href="http://hivresourcetracking.org/sites/default/files/RT_One-Pager_July_2014.pdf">fallen</a> by 4%. And the UK’s <a href="https://www.gov.uk/government/topical-events/girl-summit-2014">DFID</a> did not even send a representative to Melbourne, since it decided to hold its own event for girls, focusing on the equally pressing and not un-related themes of female genital cutting and early child marriage, in London, right in the middle of the AIDS conference. </p> <p>So I am left wondering whether anything is going to <a href="http://aidsfreeworld.org/Publications-Multimedia/Articles/AIDS-2014.aspx">change</a> in the HIV world for young women, either vulnerable to or already living with HIV? </p> <p>At the conference I had the privilege of (re)meeting inspiring young women who are our movement’s new leaders: young women have grown up with HIV such as L’Orangelis <a href="http://pag.aids2014.org/session.aspx?s=1991">Thomas</a> from Puerto Rico, Violet <a href="http://pag.aids2014.org/session.aspx?s=1951">Banda</a> from Malawi and Consolata <a href="http://vimeo.com/101795510 ">Opiyo</a> from Kenya; young women who have recently acquired HIV, such as Ayu <a href="http://www.youtube.com/watch?v=IXL5TyBtjAw&amp;feature=youtu.be">Oktariani</a> and Sindi <a href="https://www.opendemocracy.net/5050/sindi-putri/indonesia-facing-life-with-hiv">Putri</a> from Indonesia, and many&nbsp; other young women who are committed to working on HIV and their sexual and reproductive health and rights <a href="https://www.youtube.com/watch?v=Ab2cOsxWSpk&amp;list=PLJy9xhf3yCelYvk_lU7iN1RsuGJ1HJeH7&amp;index=2">globally</a>. Whilst they all spoke out forcefully and passionately about their need for safe spaces, for good education, information and choice, for access to non-judgmental health care and services without their parents’ permission, for protection from gender-based violence and for their rights – in all their diversities - to be upheld, I have doubts about how much the academics, politicians and policy makers really listened to their messages. </p> <p>According to Dr Susan <a href="http://pag.aids2014.org/PAGMaterial/PPT/1800_3059/final.pptx">Kasedde</a> of UNICEF, young <a href="http://pag.aids2014.org/PAGMaterial/PPT/1800_3059/UNICEF_FINAL_v1_720.mp4">people</a> aged 10-19 are the only group in whom there is a 50% increase in all AIDS-related deaths globally.&nbsp; As L’Orangelis Thomas Negron put it in her plenary speech: <em>“According to the latest report of the World Health Organization, AIDS is the 2nd leading cause of death in young people and adolescents, the 1st is traffic accidents. And I mention this because the first one isn't another disease, it's not some other health issue going above of HIV/AIDS. </em></p> <p><em>Adolescents and young people are dying from AIDS. And it is not only about dying, is about what happens before death.” </em>Indeed, Kasedde explained that globally, of the 2.3 million new HIV people with HIV in 2012, 300,000 - or just over 800 new people each day&nbsp; - were adolescents. Two thirds of these were adolescent girls. </p> <p>Young women don’t live in a vacuum. Young women, in many parts of the world, often date much older men. This is often in order to access goods and services and the related status which they do not have the economic, social or political status to acquire by themselves. Miranda van Reeuwijk in her PhD from <a href="http://dare.uva.nl/record/305838">Tanzania</a> highlighted the breadth and depth of poverty which drives girls to have sex in secrecy, especially with out-of-school boys and <a href="http://dare.uva.nl/document/135797">men</a>, in order to pay for basics such as school books and uniform, food and help with homework. Dr Salim <a href="http://pag.aids2014.org/PAGMaterial/PPT/1501_2401/final.pptx">Karim</a> in his&nbsp; Monday plenary showed scientific proof of this so-called “inter-generational sex” through philogenetic analysis of school students in rural South Africa. This shows conclusively what we have long believed – that young women are acquiring HIV not from their peers but from older men. Thus whilst 1.5% of young men aged 18-19 had HIV there, 13.6% of young women aged 18-19 had HIV. A stark difference. </p> <p>Some organisations think you can give cash transfers to girls to make them less vulnerable to having sex with older men. But it is far more complex than this. Young people need – and deserve – more quality holistic support, from all of society around them than any amount of cash alone will provide. Before the first ever Stepping <a href="http://steppingstonesfeedback.org/index.php/About/What_issues_does_it_address/gb">Stones</a> programme in Uganda, back in 1994, young men told us “why bother about AIDS? We have to die some day anyway, we might as well enjoy ourselves while we can. These girls are our enemies, you cannot trust them, they are the ones who infect us….” This dominant narrative is widespread across many parts of the world. However after the Stepping Stones programme, these same boys said: “We have now realised that we have a life to live and things to do… the girls here have been on this journey with us, they are now our friends. These are the ones we would like to work with, date and marry…. we would like to work together with them to build a positive future.” The young men and young women alike had dreams and desires for an income, for non-judgmental information, for options, choice, shared decision-making and safety - and sustained respect and support from their elders to move forward with their lives and realise their dreams. I have heard many similar shifts in discourse around the world once young people – and their elders – are offered the space and time to reflect on their own and others’ lives in <a href="http://www.stratshope.org/resources/dvds_item/stepping-stones-revisited">safety</a>. They also have a positive knock-on effect on the next generation of <a href="http://vimeo.com/69251113">children</a>, who are then able to grow up in safety and peace rather than violence and vulnerability. But such <a href="http://www.whatworksforwomen.org/chapters/21-Strengthening-the-Enabling-Environment/sections/57-Transforming-Gender-Norms/evidence#s-431">powerful</a> community-wide holistic empowerment programmes, which truly leave no-one behind, recognising the predominance of inter-generational sex and the need to build new bridges across genders <em>and</em> generations, are very rare. And they cost money also. Yet without such investment, numbers of HIV among young people will indubitably continue to <a href="http://pag.aids2014.org/PAGMaterial/PPT/1800_3059/final.pptx">rise</a>. </p> <p>As Martha Tholanah said on these pages last week: <em>“And what about our </em><a href="https://www.opendemocracy.net/5050/martha-tholanah/hiv-disclosure-changing-ourselves-changing-others"><em>children</em></a><em>? Unless we all take steps to change our own attitudes and those of our healthworkers and lawyers, our children will continue to acquire HIV at birth, and will continue to grow up uninformed, untested and untreated. They will also become criminalised as they begin to have their own sexual relations when older. And they will get sick and die. Unless we act now to perform a u-turn in attitudes and practices, this legacy of shame and blame will continue and will be the heritage that we, women and men alike, bequeath our children. And that will be a disaster for us all.”</em> Once again, such actions are not about <a href="https://www.opendemocracy.net/5050/alice-welbourn/end-to-aids-not-through-medication-alone">medication</a>, but about meaningful communication, listening, discourses and reflection – and a determined sustained commitment to act respectfully, humanely and peacefully towards one another. </p> <p>We have the science. </p> <p>We need <a href="https://www.opendemocracy.net/5050/alice-welbourn/gender-politics-of-funding-women-human-rights-defenders">investment</a> in the programmes which will change minds and hearts amongst those with power to act – whether politicians, academics, policy makers or community elders. And we need concomitant investment in all women, together with girls and boys, to support themselves to broaden their own horizons - and become successful leaders in their own right. </p> <p>The next AIDS conference is in Durban in 2016 in the heart of the area where young women are most badly <a href="http://pag.aids2014.org/PAGMaterial/PPT/1800_3059/final.pptx">affected</a> by HIV globally. Despite all the inspiring speeches from young women during the week, there was barely a mention of women and girls throughout the closing <a href="http://aidsfreeworld.org/Publications-Multimedia/Video-Commentaries.aspx">ceremony</a> in Melbourne. L’Orangelis Thomas, at the end of her inspirational plenary speech, declared: </p> <p><em>“The failure to provide to adolescents the adequate information and the tools to make informed decisions about their health care is an assault on their existence. By denying access to health, you violate our human rights and in consequence, the opportunity to have a dignified life……..</em> <em>In 15 years, in 2030 will we be still talking about the end of AIDS? Are we going to wait 15 more years? We will meet again and we will see.”&nbsp;&nbsp; <br /></em></p> <p>Let us all hope and pray that Durban will show us the results that all the young women in Melbourne are striving for.</p><p><em><strong>This article is part of 50.50's series of critical perspectives on&nbsp;<a href="https://www.opendemocracy.net/5050/womens-movement-building/aids-gender-and-human-rights">AIDS Gender and Human Rights</a>. We have been publishing articles daily during the 2014 World AIDS Conference in Melbourne July 20-25</strong></em></p> <p><strong>&nbsp;</strong></p> <p>&nbsp;</p> <p>&nbsp;</p><fieldset class="fieldgroup group-sideboxs"><legend>Sideboxes</legend><div class="field field-related-stories"> <div class="field-label">Related stories:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> <a href="/5050/anonymous/hiv-homophobia-and-historical-regression-where-next-for-uganda">HIV, homophobia and historical regression: where next for Uganda?</a> </div> <div class="field-item even"> <a href="/5050/ida-susser-zena-stein/bioinsecurity-and-hivaids">Bio-insecurity and HIV/AIDS </a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/aids-2014-conference-stepping-up-pace-and-still-on-wrong-path">AIDS 2014 Conference: stepping up the pace and still on the wrong path </a> </div> <div class="field-item even"> <a href="/5050/cecilia-chung/hiv-call-for-solidarity-with-transgender-community">HIV: a call for solidarity with the transgender community </a> </div> <div class="field-item odd"> <a href="/5050/silvia-petretti/women-who-use-drugs-resistance-and-resilience-in-face-of-hiv">Women who use drugs: resistance and resilience in the face of HIV</a> </div> <div class="field-item even"> <a href="/5050/sindi-putri/indonesia-facing-life-with-hiv">Indonesia: facing life with HIV </a> </div> <div class="field-item odd"> <a href="/5050/susan-paxton/aids-2014-where-are-women-we-need-to-step-up-pace">AIDS 2014: Where are the women we need to step up the pace? </a> </div> <div class="field-item even"> <a href="/5050/susan-paxton/positive-and-pregnant-in-asia-how-dare-you">Positive and pregnant in Asia - How dare you</a> </div> <div class="field-item odd"> <a href="/5050/aziza-ahmed-jennifer-gatsi-mallet/sterilisation-fight-for-bodily-integrity">Sterilisation: the fight for bodily integrity</a> </div> <div class="field-item even"> <a href="/5050/ida-susser/microbicide-success-feminism-is-essential-to-good-science">A microbicide success: feminism is essential to good science</a> </div> <div class="field-item odd"> <a href="/5050/martha-tholanah/hiv-disclosure-changing-ourselves-changing-others">HIV disclosure: changing ourselves, changing others </a> </div> <div class="field-item even"> <a href="/5050/jessica-horn/accepted-mishaps-faith-healing-hiv-and-aids-responses">Accepted mishaps? 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Silvia Petretti writes from her own experience, and asks why the needs and rights of women who use drugs are being overlooked at this year's International <a href="http://www.aids2014.org/">AIDS Conference</a></p> </div> </div> </div> <p><em>This is the ninth article in 50.50's <a href="https://www.opendemocracy.net/5050/womens-movement-building/aids-gender-and-human-rights">series on the World AIDS 2014 Conference</a> taking place this week in Melbourne</em></p> <p>One of the key themes of this year's International AIDS conference is the centrality of involving key populations in the response to HIV, and to address many of the challenges they face, especially at a legal and policy level. The <a href="http://www.who.int/hiv/pub/guidelines/arv2013/intro/keyterms/en/">World Health Organisation&nbsp; defines key populations</a> as ‘<em>men who have sex with men, transgender people, people who inject drugs and sex workers. Most-at-risk populations are disproportionately affected by HIV in most, if not all, epidemic contexts.</em>‘&nbsp; WHO also recognises that people living with HIV have to be recognised as a key population in all HIV epidemics.&nbsp; </p> <p>I have been going to the <a href="http://www.aids2014.org/">International AIDS Conferences</a> since 2006 ( when I was awarded a scholarship for the first time),&nbsp; however this year I am among the many women living with HIV who have found it extremely hard to find <a href="https://www.opendemocracy.net/5050/susan-paxton/aids-2014-where-are-women-we-need-to-step-up-pace">funds to attend.</a> So I am watching it from afar and I value this opportunity to comment on it.</p> <p>I find it puzzling that women are excluded from this definition of key populations, as women in some parts of the world represent 60% of those diagnosed with HIV. For example, in Sub-Saharan Africa where we have the largest populations of individuals living with HIV in the world - <a href="http://www.unaids.org/en/media/unaids/contentassets/documents/epidemiology/2013/gr2013/201309_epi_core_en.pdf">nearly 18 million</a>. </p> <p>If I were at the conference I would make sure to voice my view that within the key population discourse it is critical to maintain a gender analysis, and cultivate an awareness of how issues specifically impact on women. During the conference <a href="https://www.youtube.com/watch?v=IXL5TyBtjAw&amp;feature=youtu.be">opening plenary</a>,&nbsp; <a href="http://www.unaids.org/en/aboutunaids/unaidsleadership/unaidsexecutivedirectormichelsidibe/michelsidibeunaidsexecutivedirector/">Michele Sidibe</a>, Executive Director of <a href="http://www.unaids.org/en/aboutunaids/unaidsleadership/unaidsexecutivedirectormichelsidibe/michelsidibeunaidsexecutivedirector/">UNAIDS</a>, made a full <a href="http://www.unaids.org/en/resources/presscentre/featurestories/2014/july/20140721_galvanizing/">commitment to ending the HIV epidemic by 2030</a>, supported by many scientists and leaders.&nbsp; One of the milestones on this&nbsp; trajectory is the commitment, signed off at the UN <a href="http://www.unaids.org/en/media/unaids/contentassets/documents/document/2011/06/20110610_UN_A-RES-65-277_en.pdf">High Level Meeting on HIV and AIDS in 2011</a>, to halve new diagnosis among people who inject drugs. Such an ambitious goal cannot be achieved unless we look at the specific needs and rights of women who inject drugs. </p><p>I am not a social scientist, but I feel I have a special insight into some of the issues because of my direct experience. My youth was plagued by depression, low self esteem, and insecurity, I used drugs, including heroin, from my teens until the time I was diagnosed with HIV at the age of thirty. Drugs were a form of self-medication that helped me deal with the painful emotional state I was in. It is obvious to me now, looking back, how the fact of being young and a woman who used drugs in the sexist Italian society of the 80s, made me vulnerable to HIV. </p> <p>However, most academic literature that deals with people who inject drugs, does not differentiate between women and men.&nbsp; Still,&nbsp; there is good evidence that shows that women who inject drugs have higher mortality rates. They are also often dependent on their male partners to inject them, and because of gender norms, often inject last when needles are shared. Evidence also tells us that women become dependent faster, and engage in more injection and sexual behaviours, including sex work or transactional sex, that lead them to be more vulnerable to HIV than men who use&nbsp; <a href="http://www.unaids.org/en/media/unaids/contentassets/documents/unaidspublication/2012/20121211_Women_Out_Loud_en.pdf">drugs</a>.&nbsp; Women-only rehabilitation facilities are rare everywhere - even more so in low and middle-income countries, and women who use drugs often experience discrimination when accessing health care services, in spite of having the same rights as all other women to have children and access to sexual health services. We know that integrated services, which offer opiates substitution therapies, sexual health services, harm reduction and treatment for HIV, Hepatitis, and&nbsp; TB - and that are not discriminatory - can be a life-saver for women who use drugs, allowing them to take care of their families and communities. However those facilities are not <a href="http://www.youtube.com/watch?v=Z79QGaEqsDM&amp;feature=youtu.be">common</a>. </p> <p>It is incredibly hard to leave drugs behind. For me, receiving an HIV diagnosis seventeen years ago was a wake-up call. I had to decide if I wanted to live or die, and I felt an urgency to make sure the little life I thought I had left was meaningful, and worth living. I was able to survive and thrive, thanks to the excellent care and support I received in the UK. Not only did I have access to high quality medical care, including free anti-retroviral medication (ARVs),&nbsp; I also had an incredibly&nbsp; important source of support from the peer-led women-only services offered by <a href="http://positivelyuk.org/">Positively UK</a> (then called Positively Women). What made the organisation special was not only that it was offering services led by women living with HIV, but that it had been set up by two women living with HIV who used drugs - Sheila and Jenny. For me it was a living example that women with HIV, including women who use drugs, can be creative, resourceful and resilient in playing <a href="http://www.unaids.org/en/media/unaids/contentassets/documents/unaidspublication/2012/20121211_Women_Out_Loud_en.pdf">leadership</a> role in the response to HIV.</p> <p>Eventually I started working for the organisation, initially offering support to women in prison and to women who use, or have used drugs. Over more than 15 years of working with Positively UK, I have seen very closely how women who use or have used drugs continue to live under the huge burden of stigma. While others could be seen as ‘victims’, we carry, in the eyes of society,&nbsp; the shame of having ‘brought this horrible illness to ourselves’. The emotional impact of this shame can often be crippling, and for many of us it has taken many years to get to some sense of dignity and stability. </p> <p>Last November I travelled to Russia, a country with a huge and fast growing HIV epidemic driven by drug use, and a government that refuses to address it and keeps promoting <a href="http://www.sciencedaily.com/releases/2010/07/100713191356.htm">punitive and ineffective laws</a>.&nbsp; During this trip I was in St. Petersburg , working with the local women’s network <a href="https://twitter.com/EVA_WomensNet">EVA</a>, training women living with HIV to facilitate peer support groups, using the <a href="http://www.shetoshe.org/">SHE toolkit</a>. Once again, I witnessed the damaging weight of shame, stigma and judgement experienced by women living with HIV. On the path to becoming leaders in their own communities, the women I was training, like me, had to fight an ongoing battle. A battle to feel that we have a right to be who we are, a right to be respected, a right to have a family, and that we are entitled to live our lives with love and acceptance. In order for us to fight this battle and stand up for our rights, we still need safe spaces to develop our confidence and voice. But those spaces are becoming rarer, as efforts and resources are channelled into promoting scale-up of ARV medications alone, without the psycho-social support programmes required to support our taking them. We need and demand access to free HIV treatment for all, however we need more than pills in order to live our lives fully and play a role in our communities. </p> <p>As I watch the International AIDS Conference from afar, I am concerned that the gender lenses on key populations are not being used as much as they should be. <a href="http://www.aids2014.org/webcontent/file/pag/Roadmaps/People%20Who%20Use%20Drugs.pdf">In the list of sessions</a> dedicated to injecting drug users, only two out of thirty-one are dedicated to women who inject drugs. </p> <p>As women who use drugs, this is not about being in competition with other minorities who are also oppressed. It is in full solidarity with the LGBT community. Challenging gender norms in HIV prevention and treatment, and promoting women’s rights go hand in hand with questioning notions of femininity and masculinity. </p> <p>I wish I could be at the Melbourne AIDS conference to say these things in person. Failing the funding to be there, I am glad to be able to share them here.</p><p> <em><strong>This article is part of 50.50's long running series on <a href="https://www.opendemocracy.net/5050/womens-movement-building/aids-gender-and-human-rights">AIDS Gender and Human Rights</a>. We are publishing articles daily during the 2014 World AIDS Conference in Melbourne July 20-25</strong></em></p><fieldset class="fieldgroup group-sideboxs"><legend>Sideboxes</legend><div class="field field-related-stories"> <div class="field-label">Related stories:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> <a href="/5050/alice-welbourn/aids-2014-conference-stepping-up-pace-and-still-on-wrong-path">AIDS 2014 Conference: stepping up the pace and still on the wrong path </a> </div> <div class="field-item even"> <a href="/5050/martha-tholanah/hiv-disclosure-changing-ourselves-changing-others">HIV disclosure: changing ourselves, changing others </a> </div> <div class="field-item odd"> <a href="/5050/ida-susser-zena-stein/bioinsecurity-and-hivaids">Bio-insecurity and HIV/AIDS </a> </div> <div class="field-item even"> <a href="/5050/susan-paxton/positive-and-pregnant-in-asia-how-dare-you">Positive and pregnant in Asia - How dare you</a> </div> <div class="field-item odd"> <a href="/5050/jessica-horn/accepted-mishaps-faith-healing-hiv-and-aids-responses">Accepted mishaps? Faith healing, HIV and AIDS responses</a> </div> <div class="field-item even"> <a href="/5050/susan-paxton/aids-2014-where-are-women-we-need-to-step-up-pace">AIDS 2014: Where are the women we need to step up the pace? </a> </div> <div class="field-item odd"> <a href="/5050/sindi-putri/indonesia-facing-life-with-hiv">Indonesia: facing life with HIV </a> </div> <div class="field-item even"> <a href="/5050/anonymous/hiv-homophobia-and-historical-regression-where-next-for-uganda">HIV, homophobia and historical regression: where next for Uganda?</a> </div> <div class="field-item odd"> <a href="/5050/hajjarah-nagadya/uganda-social-impact-of-hiv-criminal-law-0">Uganda: the social impact of HIV criminal law</a> </div> <div class="field-item even"> <a href="/5050/cecilia-chung/hiv-call-for-solidarity-with-transgender-community">HIV: a call for solidarity with the transgender community </a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/end-to-aids-not-through-medication-alone">An end to AIDS?: Not through medication alone</a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/absence-of-evidence-does-not-mean-evidence-of-absence">Absence of evidence does not mean evidence of absence</a> </div> <div class="field-item odd"> <a href="/5050/ida-susser/microbicide-success-feminism-is-essential-to-good-science">A microbicide success: feminism is essential to good science</a> </div> </div> </div> </fieldset> <div class="field field-country"> <div class="field-label"> Country or region:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> UK </div> <div class="field-item even"> Russia </div> </div> </div> 50.50 50.50 UK Russia 50.50 Women's Movement Building 50.50 AIDS, Gender and Human Rights 50.50 Editor's Pick women's human rights women's health 50.50 newsletter Silvia Petretti Thu, 24 Jul 2014 08:03:17 +0000 Silvia Petretti 84680 at https://www.opendemocracy.net HIV, homophobia and historical regression: where next for Uganda? https://www.opendemocracy.net/5050/anonymous/hiv-homophobia-and-historical-regression-where-next-for-uganda <div class="field field-summary"> <div class="field-items"> <div class="field-item odd"> <p>President Yoweri Museveni was once globally admired for mobilising an HIV response in Uganda founded upon compassion and shared responsibility. So what happened? We need to look back in time in order to comprehend the devastating scale of Uganda’s backslide in HIV prevention, care and support</p> </div> </div> </div> <p><em>This article is the 8th in 50.50's <a href="https://www.opendemocracy.net/5050/womens-movement-building/aids-gender-and-human-rights">series on the World AIDS 2014 Conference</a> taking place this week in Melbourne</em></p><p>The <a href="http://www.aids2014.org/">International AIDS Conference</a> is a chance to reflect on where we’ve come from and what we’ve learned along the way in terms of HIV prevention, care and support. The growth of inspirational AIDS <a href="http://www.worldaidscampaign.org/2013/12/ending-aids-myth-or-reality/">rhetoric</a>, as well as significant <a href="http://www.unaids.org/en/resources/presscentre/featurestories/2013/june/20130605symposiumcaprisa/">medical advances</a>, might imply that progress is inevitable, or that it’s simply a question of time until we end the AIDS pandemic. But moving forward doesn’t automatically constitute movement in the right direction. Hajjarah Nagadya’s article highlighted the regressive implications of Uganda’s <a href="http://www.hrw.org/news/2014/05/13/uganda-deeply-flawed-hiv-bill-approved">new HIV laws</a> upon the “little success already achieved” for women in relation to HIV. This comes only months after the <a href="http://www.theguardian.com/world/2014/feb/24/uganda-president-signs-anti-gay-laws">introduction</a> of the harsh, <a href="http://wp.patheos.com.s3.amazonaws.com/blogs/warrenthrockmorton/files/2014/02/Anti-Homosexuality-Act-2014.pdf">anti-homosexuality act</a>, which can specifically penalise homosexuals living with HIV. At the same time, Uganda is one of only three countries - together with Angola and Mozambique - on the continent where <a href="http://sti.bmj.com/content/86/Suppl_2/ii72.full">HIV prevalence is rising</a> instead of falling. </p> <p>But only two decades earlier, Uganda’s HIV response was <a href="http://data.unaids.org/publications/irc-pub04/value_monitoring_uganda_en.pdf">heralded</a><strong> </strong>as the bravest and smartest in Africa. Incumbent president, Yoweri Museveni, was once globally admired for mobilising an HIV response founded upon compassion and shared responsibility. So what happened? This article looks back in time in order to comprehend the real, devastating scale of Uganda’s backslide in HIV prevention, care and support. </p> <p>“Brother, you have a problem.” </p> <p>These were the legendary words of advice given from Fidel Castro to the only recently sworn-in president of Uganda, Yoweri Museveni, in 1986. They came after Museveni sent 60 soldiers from his army to Cuba for further military training. Routine HIV testing in Cuba discovered that 18 of these tested HIV positive. In fact, we now know that approx. 30% of the entire population of Uganda was estimated to be living with HIV at this <a href="http://www.newscientist.com/article/mg12717241.400-aids-epidemic-moves-south-through-africa.html">time</a>. Some months after testing, Castro took Museveni aside during a conference in Zimbabwe and delivered the news in person. The Ugandan president’s response was ground-breaking. He called for action at all levels, from schools to churches and mosques. This made Museveni the first leader in Africa to acknowledge the epidemic publicly and Uganda the first country in Africa to make the HIV pandemic a national, political priority. </p> <p>Uganda soon implemented the famous <a href="http://pmj.bmj.com/content/81/960/625.full">ABC programme</a> (Abstain, Be faithful, Use condoms). Billboards were erected urging people to “love carefully” to practice “zero grazing” (not to look outside of their own pen for a different mate). Bishops and Imams <a href="http://siteresources.worldbank.org/DEVDIALOGUE/Resources/ImpactofReligiousOrganizationsinHIV.Green.doc">united</a> against the threat of HIV. Condoms became widely accessible, even from shop corners of remote areas. The candid discussion about sex and condoms that it stimulated was unprecedented. </p> <p>It was this environment that enabled the formation of <a href="http://www.tasouganda.org/index.php?option=com_content&amp;view=article&amp;id=56">The AIDS Support Organisation</a> (TASO). It was the first community support programme of its kind and it could only have existed under Museveni’s presidency. TASO created the justly famous, and widely replicated, model of Positive Living: “creating systems and structures that take care of and support people living with HIV to lead meaningful, productive and happier lives while at the same time supporting people not living with HIV to remain HIV free.” In other words, TASO promoted a system of mutual support and acceptance, care and mindfulness. What was so progressive about Uganda’s national HIV response, apart from the fact that it was led by the highest office in the land, was that the movement was grounded in compassion, social justice, dignity and treatment access for all. Later, Uganda became an early pioneer of antiretroviral treatment (ART) scale-up in 2004, allowing people living with HIV to live much longer and healthier lives. As a result of all of these advances, Uganda saw massive drop in the number of HIV transmissions. The rate of people living with HIV in Uganda was reduced from approximately 30% of the population, in 1986, to <a href="http://www.avert.org/hiv-aids-uganda.htm">6.4% in 2006</a>. </p> <p>To put the significance of Museveni’s open and pro-active approach to HIV into perspective, we have to understand the context. Uganda’s ‘love carefully’ revolution was happening whilst the epidemic was being casually ignored or actively discredited by most other political figures in Africa. Even Nelson Mandela never fully addressed HIV until after his retirement.&nbsp; He remarked to the <a href="http://www.theguardian.com/world/2013/dec/06/nelson-mandela-aids-south-africa">BBC in 1994</a> that, "I wanted to win, and I didn't talk about AIDS." But even after winning, and despite governing a country that was home to some of the highest numbers of people living with HIV anywhere in the world, Nelson Mandela remembered how he did not have “time to concentrate on the issue". It was Museveni’s original support for public discussion and action about HIV that paved the way for the extraordinary community-based leadership and innovation that continues to thrive today. </p> <p>But now, over two decades later, the global community of activists, scientists, policy makers are again crying out - “Brother, you have a problem” – albeit to a less receptive Museveni. 13th May saw the passage of the <a href="http://www.hrw.org/news/2014/05/13/uganda-deeply-flawed-hiv-bill-approved">HIV Prevention and Control Act</a> by the Ugandan Parliament. It was yet another devastating blow to the HIV agenda and to human rights. The act includes Mandatory HIV testing for pregnant women and their partners, as well as for victims of sexual abuse. It also allows medical providers to disclose a patient’s HIV status to others. Both of the above contravene <a href="http://www.who.int/hiv/topics/vct/sw_toolkit/summary_best_practices_africa.pdf">international best practices</a> and violate fundamental human rights. </p> <p>Mandatory HIV testing unfairly targets women, as they are more likely to be tested in antenatal clinics. This makes them vulnerable to violence; from their partners, their communities, the health service providers and now also; the law. The same law also intends to <a href="http://www.ipsnews.net/2014/05/uganda-passes-another-repressive-law-time-criminalising-hiv-transmission/">criminalise</a> the transmission of HIV&nbsp; - as well as ‘attempted’ HIV transmission. It is a move that contradicts evdience, logic and human rights. Puntive laws instil fear and blame. There is no evidence that links them to beneficial public health outcomes. Instead, <a href="http://www.aidsmap.com/The-negative-impact-on-public-health/page/1444157/">research</a> has shown that it de-incentivises testing and heightens stigma. Stigma then <a href="http://data.unaids.org/publications/irc-pub06/jc999-humrightsviol_en.pdf">reinforces</a> further discrimination against people living with HIV. What then, is the justification of these laws? </p> <p>The introduction of the act seems to be part of a larger and worrying trend in which Uganda is moving away from the foundation of care and support that was present in its initial public health campaigns. Homosexuality has long been illegal in Uganda, as it is in a large number of African countries, despite its existence before the British <a href="http://www.sxpolitics.org/?p=9386">imposed</a> stringent homophobic laws on their colonial territories. But on Tuesday 25th February 2014, the <a href="http://www.bbc.co.uk/news/world-africa-26320102">“Anti-Homosexuality-Act”</a> was signed by the president. The bill included the creation of new crimes, to be imposed alongside brutal and arbitrary punitive measures. “Aggravated homosexuality”, for example, carries a life sentence and penalises “homosexual acts committed by a person living with HIV.” “Aiding and abetting homosexuality” carries a seven-year sentence and looks likely to inhibit key public health services from operating in the country. The Ugandan government officially <a href="http://www.scribd.com/doc/232883739/Statement-by-Uganda-Govt-on-Anti-Homosexuality-Act">refutes</a> this but <a href="http://www.avert.org/hiv-aids-uganda.htm">Avert</a> claims that HIV services supporting men who have sex with men (MSM) are effectively non-existent and we have already heard from colleagues that organisations supporting gay rights are being closed down. This act includes lesbians for the first time. Current data on HIV prevalence among MSM in Uganda are unknown; data is not even being collected in order to understand the full impact that these laws will have upon HIV transmission. Museveni, who was the first African leader to speak out about the HIV epidemic, now seems content to shut his eyes to it. </p> <p>Persecution of LGBTI people is increasing. Sexual Minorities Uganda (SMUG) and the National LGBTI Security Team <a href="http://www.sexualminoritiesuganda.com/Torment%20to%20Tyranny%2009-05-2014%20FINAL.pdf">documented</a> 162 reported incidences of persecution perpetrated against Ugandan “LGBTI people” between 20 December 2013 and 1 May 2014. Even if we cannot yet know how the Anti-homosexuality-law is affecting HIV transmission rates among this key population in Uganda, this study gives us a grim picture of how it may already be manifesting by way of violence and discrimination. </p> <p>The real tragedy of this situation is the historical regression. For more than a decade Ugandan political leadership and the tremendous accompanying community response was an exemplar of best public health practice. Yet in 2011 Uganda was recognised as one of <a href="http://www.who.int/hiv/pub/progress_report2011/hiv_full_report_2011.pdf">only three countries</a> on the continent in which rates of HIV prevalence are rising. And the long-term impacts of both the <a href="http://www.bbc.co.uk/news/world-africa-26320102">Anti-Homosexuality laws</a> and the <a href="http://www.hrw.org/news/2014/05/13/uganda-deeply-flawed-hiv-bill-approved">HIV Prevention and Control Act</a> look set to worsen this. “Brother, you have a problem” remains astute counsel for Museveni. </p> <p>Executive Director of Uganda Network on Law, Ethics &amp; HIV/AIDS. Dorah Kiconco, <a href="http://www.monitor.co.ug/News/National/Rights-bodies-protest-HIV-Aids-Bill/-/688334/2314774/-/64x7m7/-/index.html">calls</a> for a holistic approach to human rights and health care. “For Uganda to address its HIV epidemic effectively, it needs to partner with people living with HIV, not blame them, criminalize them, and exclude them from policy making.” </p> <p>Let’s hope the people of Uganda who have worked for decades to make sure that care and support formed the basis for HIV prevention campaigns can regain their president’s ear. Meanwhile, we must all hope that whilst Uganda still leads with discrimination and fear, it will not become again the public health role model for other African countries. </p> <p>&nbsp;<em>The author's name has been withheld at her request</em></p><p><br /><strong><em>This article is part of 50.50's long running series on <a href="https://www.opendemocracy.net/5050/womens-movement-building/aids-gender-and-human-rights">AIDS Gender and Human Rights</a>. We are publishing articles daily during the 2014 World AIDS Conference in Melbourne July 20-25</em></strong></p><p><br /><em>&nbsp;</em></p> <p>&nbsp;</p> <p>&nbsp;</p> <p>&nbsp;</p> <p>&nbsp;</p> <p>&nbsp;</p><fieldset class="fieldgroup group-sideboxs"><legend>Sideboxes</legend><div class="field field-related-stories"> <div class="field-label">Related stories:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> <a href="/5050/alice-welbourn/aids-2014-conference-stepping-up-pace-and-still-on-wrong-path">AIDS 2014 Conference: stepping up the pace and still on the wrong path </a> </div> <div class="field-item even"> <a href="/5050/ida-susser-zena-stein/bioinsecurity-and-hivaids">Bio-insecurity and HIV/AIDS </a> </div> <div class="field-item odd"> <a href="/5050/martha-tholanah/hiv-disclosure-changing-ourselves-changing-others">HIV disclosure: changing ourselves, changing others </a> </div> <div class="field-item even"> <a href="/5050/cecilia-chung/hiv-call-for-solidarity-with-transgender-community">HIV: a call for solidarity with the transgender community </a> </div> <div class="field-item odd"> <a href="/5050/susan-paxton/positive-and-pregnant-in-asia-how-dare-you">Positive and pregnant in Asia - How dare you</a> </div> <div class="field-item even"> <a href="/5050/jessica-horn/accepted-mishaps-faith-healing-hiv-and-aids-responses">Accepted mishaps? Faith healing, HIV and AIDS responses</a> </div> </div> </div> </fieldset> 50.50 50.50 50.50 AIDS, Gender and Human Rights 50.50 Our Africa 50.50 Editor's Pick women's movements women's human rights women's health 50.50 newsletter Anonymous Wed, 23 Jul 2014 08:45:33 +0000 Anonymous 84650 at https://www.opendemocracy.net Uganda: the social impact of HIV criminal law https://www.opendemocracy.net/5050/hajjarah-nagadya/uganda-social-impact-of-hiv-criminal-law-0 <div class="field field-summary"> <div class="field-items"> <div class="field-item odd"> <p>Criminalisation of HIV is unjust, unwise, undermines existing government efforts and is especially damaging to women’s rights, argues Hajjarah Nagadya</p> </div> </div> </div> <p><em>This article is the seventh in 50.50's <a href="https://www.opendemocracy.net/5050/womens-movement-building/aids-gender-and-human-rights">series on the World AIDS 2014 Conference</a> taking place this week in Melbourne</em></p><p>The declaration of the 20th International <a href="http://www.aids2014.org/">AIDS Conference</a> now underway in Melbourne, states: "<em>We express our shared and profound concern at the continued enforcement of discriminatory, stigmatizing, criminalizing and harmful laws which lead to policies and practices that increase vulnerability to HIV</em>." </p> <p>The declaration comes two months after the Ugandan Parliament took a step backwards in the fight against AIDS by passing the HIV Prevention and Control <a href="http://www.scribd.com/doc/217414972/Committee-on-Health-HIV-AIDS-Prevention-and-Control-Bill-2010">Bill</a> which criminalises intentional HIV transmission. Although this Bill has not yet been signed into law by the president, it is clear to us that the legislators are mindless of the rights of people living HIV and heartless to all Ugandans. In other parts of the <a href="http://hivlawcommission.org/resources/report/HIV&amp;Law-Factsheet-EN.pdf">world</a> such as<strong> </strong>Zimbabwe, laws are also <a href="http://criminalisation.gnpplus.net/country/zimbabwe">pending</a> and also at risk of being passed into <a href="http://www.hivjustice.net/news/african-hiv-criminalisation-achievements-and-challenges-highlighted-at-icasa-2013/">law</a>. </p> <p>Ugandan legislators insist that the bill<strong> </strong>is designed to protect the rights of people living with HIV. However, in our view this bill, once signed into law, will only stigmatize them. Moreover, it will deter those both with and without the virus from accessing prevention, treatment, and care services. </p> <p>The new legisaltion opens up to health care providers the right to impose mandatory testing on anyone in their care. Furthermore, it includes a clause which also criminalises attempted transmission, a clause that puts at risk those in discordant relationships - where one partner has HIV and the other does not. </p> <p>Criminalisation of intentional transmission of HIV contravenes the International <a href="http://data.unaids.org/publications/irc-pub07/jc1252-internguidelines_en.pdf">Guidelines </a>on HIV and Human Rights, which state that “<em>criminal and or public health legislation should not include specific offences against the deliberate and intentional transmission of HIV, but rather should apply general criminal offences to these exceptional circumstances.</em>” This clause thus also authorizes an individual’s health care provider to disclose a person's HIV status to anyone whom they think is possibly exposed to HIV by this individual.&nbsp; </p> <p>In most of the world, few people have tested voluntarily for HIV. Indeed most countries – including the <a href="http://www.avert.org/hiv-aids-uk.htm">UK</a> - are still struggling to ensure that people get <a href="http://www.unaids.org/en/resources/presscentre/pressreleaseandstatementarchive/2014/march/20140305prptg/">tested</a> at all<strong><span>.</span></strong> However, punitive laws have emerged in many regions - including<strong> </strong>North America and<strong> </strong><a href="http://www.hivjustice.net/news/african-hiv-criminalisation-achievements-and-challenges-highlighted-at-icasa-2013/">Africa</a> -&nbsp; which are still struggling to ensure there is progress towards an effective HIV response, and where health care services have not yet extensively reached the people who need them. This new legislation will mean that even the little success achieved in Uganda is likely to be adversely affected. </p> <p>Criminalization of HIV does not only concern people living with HIV, but all people. The bill seems only to be directed at those already knowing their HIV status. However there has been no discussion of its impact on those who do not yet know their status. This means that people will in future just avoid being tested, in order not to fall foul of this law. Government-promoted testing programmes will thus also be undermined by such legislation. There is no way HIV can be managed when there is criminalisation of transmission: the stated aim of the bill is contradicted by its content.&nbsp; </p> <p>As if all the above were not bad enough, this legislation will have a specific impact on women living with HIV who are pregnant.<em> <br /></em></p> <p>Many countries, including Uganda, are struggling to implement new programmes like the “Elimination of Mother to Child Transmission” (<a href="http://www.zero-hiv.org/">eMTCT</a>) , so that all women living with HIV may be in a position to give birth to HIV-free babies and also stay healthy themselves. According to the <a href="http://reliefweb.int/sites/reliefweb.int/files/resources/UNAIDS_Global_Report_2013_en.pdf">UNAIDS </a>&nbsp;Global Report 2013, statistics show that antiretroviral coverage among pregnant women living with HIV was at 62% in 2012. A further 38% did not receive life saving treatment. This means that over one third of children were at risk of acquiring HIV around the time of birth. </p> <p>A major barrier to HIV testing and treatment for women already exists in the form of gender-based <a href="http://www.salamandertrust.net/resources/VAPositiveWomenBkgrdPaperMarch2011.pdf">violence</a>, both in health care settings and at home. Since women are the section of society who are most often tested for HIV, during peri-natal care, it is widely assumed that the woman is the parent who has acquired HIV first. </p> <p>Science shows that it is difficult, if not impossible, to establish in court who between two partners acquired HIV first or who caused <a href="http://www.avert.org/criminal-transmission-hiv.htm">transmission</a>, for purposes of sustaining prosecution. This means many <a href="http://www.hivjustice.net/news/african-hiv-criminalisation-achievements-and-challenges-highlighted-at-icasa-2013/">women</a> are already blamed for transmission without any clear evidence.&nbsp; Women understandably fear being blamed - by health providers and partners alike - for having brought HIV into the relationship. </p> <p>With the introduction of the Ugandan bill, women’s fear of testing and its consequences increases. This is because women who are expecting a baby will also now not go for testing, for fear that the health service will collect information about them that could be used as evidence to criminalize them in future. The majority of women will also not access ante-natal or maternal health services, since most will have had to have a test before accessing these services. </p> <p>Instead, pregnant women will resort to traditional birth attendants, who do not have access to anti-HIV medication, and who require no HIV test. This will thus inadvertently increase the number of children likely to be born with HIV. </p> <p>Thus this new legislation, waiting to be signed into law in Uganda, will mean that maternal mortality figures – already high for women with <a href="http://www.aidsmap.com/Maternal-death-rate-five-times-higher-in-women-with-HIV-South-African-audit-shows/page/1435564/">HIV</a> – will also rise. </p> <p>Children born with HIV may well ask in future why they were born without the full protection of the state for themselves - and for their mothers.&nbsp; </p> <p>The <a href="http://www.hrw.org/news/2014/05/13/uganda-deeply-flawed-hiv-bill-approved">HIV Prevention and Control Bill</a>, &nbsp;now awaiting the President's signature, demonizes individuals who are living with HIV and AIDS and worsens existing stigma around the illness. It would particularly criminalise women who, as a result of pregnancy-related medical care, form the majority of the few people who know their HIV status. Thus women especially will be exposed to the risk of criminal prosecution. They will also be at even greater risk of HIV-related violence and abuse than they already are. </p> <p>Applying criminal law to HIV exposure or transmission does nothing to address the epidemic characterized by gender-based <a href="http://www.athenanetwork.org/assets/files/10%20Reasons%20Why%20Criminalisation%20Harms%20Women.pdf">violence</a> or the deep economic, social, and political inequalities that are at the root of women’s and girls’ disproportionate vulnerability to HIV. </p> <p>Women are more likely to be the ones prosecuted for HIV transmission due to inherent gender-based power imbalances. Because they access maternal health care services, women are more likely to know their status first, compared to their male partners.&nbsp; Criminalization of HIV exposure or transmission will therefore not protect women from coercion or violence by their intimate partners and in-laws. </p> <p>It is unwise and unjust for countries to criminalize HIV transmission. With such legislation governments are much less likely to achieve their target goals of HIV prevention. They should rather focus on promoting laws that outlaw stigmatization of people living with HIV and protect their rights, as some other countries have <a href="http://www.hivjustice.net/news/african-hiv-criminalisation-achievements-and-challenges-highlighted-at-icasa-2013/">begun</a> to do. We need laws that extend services closer to those most affected, and&nbsp; ensure that women living with HIV have access to a comprehensive package of sexual and reproductive health services. Criminalization of HIV will not reduce HIV transmission rates. Instead it will just undermine some of the progress there has been in Uganda so far achieved. </p> <p>I won’t be at the Conference myself. However, I hope that other colleagues there will be raising these issues – and that the Ugandan Government will take note.</p><p><strong><em>This article is part of 50.50's long running series on <a href="https://www.opendemocracy.net/5050/womens-movement-building/aids-gender-and-human-rights">AIDS Gender and Human Rights</a> exploring the ways in which global policies ignore the gender dimensions of the pandemic, and the impact this has on women's human rights. We are publishing daily during the 2014 World AIDS Conference in Melbourne July 20-25</em></strong></p> <p>&nbsp;</p> <p>&nbsp;</p> <p>&nbsp;</p><fieldset class="fieldgroup group-sideboxs"><legend>Sideboxes</legend><div class="field field-related-stories"> <div class="field-label">Related stories:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> <a href="/5050/alice-welbourn/aids-2014-conference-stepping-up-pace-and-still-on-wrong-path">AIDS 2014 Conference: stepping up the pace and still on the wrong path </a> </div> <div class="field-item even"> <a href="/5050/susan-paxton/aids-2014-where-are-women-we-need-to-step-up-pace">AIDS 2014: Where are the women we need to step up the pace? </a> </div> <div class="field-item odd"> <a href="/5050/cecilia-chung/hiv-call-for-solidarity-with-transgender-community">HIV: a call for solidarity with the transgender community </a> </div> <div class="field-item even"> <a href="/5050/martha-tholanah/hiv-disclosure-changing-ourselves-changing-others">HIV disclosure: changing ourselves, changing others </a> </div> <div class="field-item odd"> <a href="/5050/ida-susser-zena-stein/bioinsecurity-and-hivaids">Bio-insecurity and HIV/AIDS </a> </div> <div class="field-item even"> <a href="/content/balancing-on-wheels-of-hope">Balancing on Wheels of Hope</a> </div> <div class="field-item odd"> <a href="/5050/susan-paxton/positive-and-pregnant-in-asia-how-dare-you">Positive and pregnant in Asia - How dare you</a> </div> </div> </div> </fieldset> <div class="field field-country"> <div class="field-label"> Country or region:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> Uganda </div> </div> </div> 50.50 50.50 Uganda 50.50 AIDS, Gender and Human Rights 50.50 Our Africa 50.50 Editor's Pick women's human rights women's health 50.50 newsletter Hajjarah Nagadya Wed, 23 Jul 2014 08:43:33 +0000 Hajjarah Nagadya 84648 at https://www.opendemocracy.net HIV disclosure: changing ourselves, changing others https://www.opendemocracy.net/5050/martha-tholanah/hiv-disclosure-changing-ourselves-changing-others <div class="field field-summary"> <div class="field-items"> <div class="field-item odd"> <p>When will policy makers, politicians and academics start to think upstream, in order to change their own and their employees’ attitudes towards HIV before seeking to change the attitudes of others?</p> </div> </div> </div> <p><em>This article is the sixth in 50.50's <a href="https://www.opendemocracy.net/5050/womens-movement-building/aids-gender-and-human-rights">series on the World AIDS 2014 Conference</a> taking place this week in Melbourne</em></p><p>One of the themes at this week's<strong> </strong>International AIDS <a href="http://aids2014.org/">Conference</a> in Melbourne, is the testing and treatment of children. In Zimbabwe as elsewhere there are high numbers of children growing up with HIV who have not been diagnosed and in whom the disease is therefore advancing without check. A recently published study in Zimbabwe by the London School of Tropical Hygiene and Medicine sought to investigate why this is and how to overcome it. It concludes, <em>“The HIV prevalence among children tested was high, highlighting the need for provider-initiated HIV testing and counselling (PITC). For PITC to be successfully implemented, clear legislation about consent and guardianship needs to be developed and structural issues addressed. Healthcare workers (HCWs) require training on counselling children and guardians, particularly male guardians, who are less likely to engage with health care services. Increased awareness of the risk of HIV infection in asymptomatic older children is <a href="http://www.plosmedicine.org/article/info%3Adoi%2F10.1371%2Fjournal.pmed.1001649">needed</a>.”&nbsp;</em> </p> <p>This study recommends training healthcare workers to counsel others. However, the study omitted to consider the key issue of attitudes held by health workers, lawmakers, and other professionals towards HIV and those with HIV. Unless healthworkers are offered this critical first step of training in self-awareness, to assess their own attitudes towards HIV, and therefore people with HIV, any amount of training to counsel others will be money wasted. High levels of <a href="http://www.aln.org.za/article.asp?id=51">stigma</a> present a huge barrier across the whole spectrum of professional service <a href="http://www.opendemocracy.net/5050/jennifer-gatsi-mallet-aziza-ahmed-mindy-roseman/are-hospitals-safe-for-women-living-with-hiv">providers</a> in the field of HIV and AIDS. When will policy makers, politicians and academics start to think upstream, in order to change their own and their employees’ attitudes towards HIV before seeking to change the attitudes of others?&nbsp; </p> <p>Stigma and discrimination are also experienced widely by many people living with HIV, particularly women and their children - in homes, communities, health-care settings, the legislative justice system and social services. This stigma is often started, and reinforced, by those who are meant to be their professional carers. </p> <p>One HIV positive woman reported having been told by a healthworker, “The best thing you can do now for yourself and unborn child is to terminate the pregnancy. How would you feel when the child is born, and you have to watch her deteriorate and die after so much suffering. The likelihood of your child being born HIV negative is nil.”&nbsp; The woman refused to terminate, and today her child is nearly a teenager, HIV negative, and healthy. </p> <p>Another woman, after missing a scheduled hospital visit due to transport issues, was told, “You decided to go on and enjoy sex and have a baby while you knew you are HIV positive, and therefore it is entirely your fault for infecting the child, and failing to meet appointments – we will attend to you last.” </p> <p>The attitudes of service providers, and people living with HIV, are both light years apart from where the facts now reside. Extensive scientific research, partly conducted in Zimbabwe, now shows that use of a condom during a sexual encounter, especially if the person with HIV is taking antiretroviral medication and thus able to maintain an undetectable viral load, makes transmission of HIV to someone else highly <a href="http://www.sciencemag.org/content/334/6063/1628.full">unlikely</a>. </p> <p>The problem is not just with health service providers however. The law and attitudes of lawyers also lag behind science. For services to be particularly responsive to the needs of people living with HIV, legislation and legal policies also need to be revised in line with the scientific evidence that is rapidly emerging from ongoing research. Even though HIV transmission in the above circumstances is now known to be highly unlikely, the Zimbabwe legislation still treats all HIV as highly contagious. For example, the Criminal Law Codification and Reform Act 23/2004, states “(2) For the purposes of this section—(a) the presence in a person’s body of HIV antibodies or antigens, detected through an appropriate test, shall be prima facie proof that the person concerned is infected with HIV”. There has been no revision to this law to reflect the <a href="http://www.hivandhepatitis.com/hiv-prevention/hiv-test-treat/4553-croi-2014-no-one-with-undetectable-viral-load-transmits-hiv-in-partner-study">significant</a> advances in scientific knowledge, so this statement is used to support the continued erroneous belief that all people with HIV having sex are likely to transmit HIV; and it upholds the views that they should be criminalised. </p> <p>HIV-related stigma has remained high in Southern Africa in general, and across the whole of the sub-continent. While there have been many advances made in knowledge and management of HIV, such that neither in <a href="http://www.hivandhepatitis.com/hiv-prevention/hiv-test-treat/4553-croi-2014-no-one-with-undetectable-viral-load-transmits-hiv-in-partner-study">sexual</a> intercourse nor in <a href="http://positivelyuk.org/pregnancy/">childbirth</a> should there any longer be a threat of transmission, many still continue to acquire HIV through lack of ability to negotiate condom use, or lack of access to ARVs when needed, and they continue to bear the brunt of the epidemic.<strong><span> <br /></span></strong></p> <p>The burdens faced by women in relation to HIV have often been <a href="http://www.unaids.org/en/media/unaids/contentassets/documents/unaidspublication/2012/20121211_Women_Out_Loud_en.pdf">cited</a>. These burdens feel so big that any woman who has responsibility for caring for a child understandably feels she is protecting the minor by refusing to have her/him&nbsp; <a href="http://www.unaids.org/en/media/unaids/contentassets/documents/unaidspublication/2014/FactSheet_Children_en.pdf">tested</a> for HIV, or by refusing to disclose the child’s HIV positive status, even to the child concerned. A caring healthcare worker may also feel like this if a minor approaches them seeking to be tested for HIV. </p> <p>The many discussions taking place amongst HIV programme implementers on “when to <a href="http://aids.about.com/od/hivseniors/a/aginghiv.htm">disclose</a> to a child” are troubling. The argument many have put forward&nbsp; is that the child may be too young to understand, or too immature to be able to handle the 'burden' of knowledge of their HIV status, or a parent or guardian’s status. The fact is that having HIV is still not discussed because it still bears an element of taboo. Despite the many advances in research that have shown that HIV is not a contagious disease that can be spread by casual contact, it seems that much of society has remained stuck in the mode when not much was known about HIV, and there was no treatment. It is also considered safer not to know one’s status than to know it and run the risk of being accused of knowingly “putting someone else at risk”. </p> <p>Surely therefore what decision-makers should be asking, instead of “when to disclose to a child?” is “how to overcome the stigmatising attitudes we as healthproviders and law-makers hold and convey?”&nbsp; </p> <p>If HIV is talked about as part of normal conversations in the home and in the school, and not as a "contagious disease", then the issue of when to disclose falls away. When I tested HIV-positive, I immediately disclosed to my brothers and sisters and their children. It became part of normal conversations, and when it came to the time when my baby started asking questions about my condition, it was easy for me to disclose my status to her. While she was tested at 18 months, when she turned seven she insisted on getting tested - it was something easy to do, and gave her reassurance as to her status.&nbsp; </p> <p>As counsellors, we are all taught that “change starts from within each and every one of us: without changing ourselves we can’t change others”. Yet this is not a concept that is familiar to other service providers or to law-makers. </p> <p>We need to rethink how we change the landscape in relation to HIV, so that lawyers and health providers alike actually believe in and act on the science themselves, rather than continuing to behave as if HIV was a highly contagious condition whose carriers should be shunned and punished.&nbsp; Researchers working in the field of HIV would be wise to make a direct intervention to challenge and change the attitudes and practices of the <a href="http://www.opendemocracy.net/content/balancing-on-wheels-of-hope">health</a> systems at national, regional, and international levels, on the results of emerging scientific research and the implications.<strong><span><br /></span></strong></p> <p>And what about our children? Unless we all take steps to change our own attitudes and those of our healthworkers and lawyers, our children will continue to acquire HIV at birth, and will continue to grow up uninformed, untested and untreated. They will also become criminalised as they begin to have their own sexual relations when older. And they will get sick and die. Unless we act now to perform a u-turn in attitudes and practices, this legacy of shame and blame will continue and will be the heritage that we, women and men alike, bequeath our children. And that will be a disaster for us all. </p> <p>I am one of the many women with HIV who are not attending the conference this week, owing to lack of funds. However I very much hope that the issues I have raised here will be addressed. </p><p><em>This article is part of 50.50's long running series on <a href="https://www.opendemocracy.net/5050/womens-movement-building/aids-gender-and-human-rights">AIDS Gender and Human Rights</a>. We are publishing articles daily during the 2014 World AIDS Conference in Melbourne July 20-25</em></p> <p>&nbsp;</p> <p>&nbsp;</p><fieldset class="fieldgroup group-sideboxs"><legend>Sideboxes</legend><div class="field field-related-stories"> <div class="field-label">Related stories:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> <a href="/5050/alice-welbourn/aids-2014-conference-stepping-up-pace-and-still-on-wrong-path">AIDS 2014 Conference: stepping up the pace and still on the wrong path </a> </div> <div class="field-item even"> <a href="/5050/susan-paxton/aids-2014-where-are-women-we-need-to-step-up-pace">AIDS 2014: Where are the women we need to step up the pace? </a> </div> <div class="field-item odd"> <a href="/5050/ida-susser-zena-stein/bioinsecurity-and-hivaids">Bio-insecurity and HIV/AIDS </a> </div> <div class="field-item even"> <a href="/5050/sindi-putri/indonesia-facing-life-with-hiv">Indonesia: facing life with HIV </a> </div> <div class="field-item odd"> <a href="/5050/cecilia-chung/hiv-call-for-solidarity-with-transgender-community">HIV: a call for solidarity with the transgender community </a> </div> <div class="field-item even"> <a href="/5050/susan-paxton/positive-and-pregnant-in-asia-how-dare-you">Positive and pregnant in Asia - How dare you</a> </div> <div class="field-item odd"> <a href="/5050/silvia-petretti/hiv-both-cause-and-consequence-of-violence-against-women">HIV: both the cause and the consequence of violence against women</a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/hiv-of-bombs-and-banks-and-transformation">HIV: of bombs and banks and transformation...</a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/hiv-and-global-plan-turning-tide-or-wash-out-for-women">HIV and the Global Plan: turning the tide or a wash-out for women?</a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/absence-of-evidence-does-not-mean-evidence-of-absence">Absence of evidence does not mean evidence of absence</a> </div> <div class="field-item odd"> <a href="/5050/ida-susser/microbicide-success-feminism-is-essential-to-good-science">A microbicide success: feminism is essential to good science</a> </div> </div> </div> </fieldset> <div class="field field-country"> <div class="field-label"> Country or region:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> Zimbabwe </div> </div> </div> 50.50 50.50 Zimbabwe 50.50 AIDS, Gender and Human Rights 50.50 Our Africa 50.50 Editor's Pick women's health 50.50 newsletter Martha Tholanah Tue, 22 Jul 2014 08:27:33 +0000 Martha Tholanah 84611 at https://www.opendemocracy.net Bio-insecurity and HIV/AIDS https://www.opendemocracy.net/5050/ida-susser-zena-stein/bioinsecurity-and-hivaids <div class="field field-summary"> <div class="field-items"> <div class="field-item odd"> <p>Science and global funding of HIV prevention is seen as an investment in biosecurity, but unless prevention and treatment take place within the context of the local bio-insecurity of the poor woman and her family the AIDS epidemic can not be fully stemmed, argue Ida Susser and Zena Stein</p> </div> </div> </div> <p><em>This article is the fifth in our <a href="https://www.opendemocracy.net/5050/womens-movement-building/aids-gender-and-human-rights">series on the World AIDS 2014 Conference</a> which opens today in Melbourne</em></p><p>The important achievements of science and global funding in providing treatment and prevention for AIDS have been considered by funding agents and governments as an aspect of global investment in biosecurity. We adopt the concept of bio-insecurity to describe the ways in which neglect with respect to HIV management, water, transport and energy versus attention to global economic pressures may increase the insecurity of the lives of poor men and women. We argue that only alleviation of the bio-insecurity of poor populations and the implementation of prevention and treatment within this social context can fully stem the AIDS epidemic. </p><p>Based on fieldwork in South Africa, we look at the less dramatic forms of bio-insecurity facing poor populations and the political choices facing new democratic states in addressing these issues. Our own work has focused on the lives of women, sometimes lacking governmental support for fundamental public health measures, trying to access needed medications and other forms of health care.</p><p>Multiple and diverse daily challenges with respect to transportation, water and energy, are faced by poor women and their families in South Africa. Such problems, which might be characterized as bio-insecurity, need to be seen in the light of the costs and impact of national and global policies which have been inappropriately characterized as promoting biosecurity. Here we might include a broad range of policies such as the Trade Related Aspects of Intellectual Property Rights (TRIPS), the promotion of global policies on water, and national efforts to build new business-friendly airports and transnational highways rather than affordable public transportation. At the same time, we find a widespread failure to provide local facilities that require education, training and support , funding and implementation of basic programmes. </p><p>World Trade Organization (WTO) policies protecting patents and promoting international trade, and global policies with respect to water and the environment, have been developed with the stated aim of building more stable national economies and, in the case of water, global environmental preservation. However, examination of their impact in specific places raises questions about their effects on the poor households of women, men and children crucial to the social reproduction of a healthy and educated population.</p><p>Current market-driven policies relating to the WTO and water and economic stability are associated with a neoliberal discourse that Watts describes as “resilience”. This corresponds to the current capitalist regime of flexible accumulation which has replaced the industrial era - as explained by Harvey. The new discourse followed the break up of the Bretton Woods agreements, which were put in place after World War II. Under Bretton Woods, global structures, such as the UN and the financial institutions, operating from a Keynesian economic perspective, channeled economic programmes directly through the states. We can see such past efforts to build effective state governments as corresponding to an industrial era with, as some have labelled it, a Fordist regime of accumulation. The new discourse of resilience and flexibility can be directly linked to a new form of governance with an increasing emphasis on civil society and individual entrepreneurship, which may bypass national governments in the Global South or else may be fully adopted by them. As Foucault claimed, such neoliberal thinking, rather than solving problems, purports to manage risk in an unpredictable future in which we can expect that those who do not have their own forms of “resilience” will die. Thus, the disconnect between global policies to prevent HIV and treat AIDS and the ongoing suffering of people at the local level, can be understood as part of larger global conditions which often lead, among the poor of Africa and elsewhere to “letting them die”.</p><p>However, in spite of the neoliberal global discourse, we can also see people at all scales struggling to survive, implementing realistic communal projects and working towards a more equitable social transformation. Little or no funding or resources are assigned directly to them.</p><p>In addressing these questions, why consider South Africa? South Africa, along with other Southern African countries, has had the highest rates of AIDS in the world since the mid-1990s, and is now, with 5.6 million people living with HIV, the country with the largest population of people living with HIV. South Africa has a powerful record of collective action and political mobilization for change. Following forty years of struggle, domestic and international movements transformed a fascist state based on a black/white racial divide into an interracial democracy. Yet, twenty years after liberation, South Africa has become one of the most unequal economies in the world. </p><p><strong>AIDS and bio-insecurity</strong></p><p>We find bio-insecurity for women in South Africa, in relation to three topics: first prevention of HIV and treatment of AIDS; second, the physical environment, water, transport and energy; third, neglect of novel improvements to the environment.</p><p><strong>HIV and AIDS: prevention and treatment</strong></p><p>Despite the recent battles over pricing (WTO, TRIPS) and denialist government policies, South Africa is now actively pursuing preventive and treatment advocacy and research. Nevertheless, as the country with the highest rate of HIV in the world and a co-existing TB epidemic, too often with resistance making its appearance, present day problems are not easily resolved. Despite the outstanding research of Caprisa and other groups, local discoveries - for example the effectiveness of the microbicide Tenofovir - have not been implemented. There is still inadequate co-ordination of support of family planning and barrier use in prevention both of peri-natal transmission and contraception.</p><p>The current enthusiasm in the US and parts of Europe for total community involvement and early treatment of all those with HIV calls for universal testing, and early initiation of treatment before sickness or symptoms are established. It has been argued that this regime might be best for patients over the long term, but it requires a level of adherence which is most certainly undermined by situations of bio-insecurity, such as lack of transportation to the clinic, lack of adequate housing and clean water. Lapses in treatment or prevention, due to such bio-insecurity will be costly in terms of drugs and resistance. The problem is not whether a microbicide or female condom is scientifically effective: that has been shown. Quite apart from the ethical issues of prescribing drugs with major side effects to people before they may actually need them, the problem lies in global support for local conditions where people can effectively follow regimens of prevention. In spite of major investments in global policies, poor women are subject to many forms of violence and lack of public resources. In other words, bio-insecurity, cannot fully benefit from new scientific advances aimed at biosecurity unless the bio-insecurity is also addressed. Bio-insecurity will triumph over global scientific technologies if full support is not made available to improve local conditions in culturally grounded and appropriate ways.</p><p> <strong>Water, transport and bio-insecurity</strong></p><p>We select two elements, water and transport, directed at the global level, but without adequate evaluation on the effects at the local level, hence without improving bio-insecurity. </p><p>Water is needed for drinking, cooking, washing, gardening. Unless there is a free supply, piped in at the level of village and home, there will be illness, exhaustion, potential physical danger (from crocodiles or assailants) and bio-insecurity. When water is rationed, or households are charged for clean water, people look for alternative sources. Sending women for miles to the nearest pond or river is no substitute for free clean water, especially as rivers and ponds are notorious for spreading disease.</p><p> In terms of transportation: motorways and airports do not help the poor woman to travel from the village to the health centre, to shop, nor to take her children to school. Walking 5 miles carrying an infant, or accessing a shared and inconvenient bus or a prohibitively expensive taxi to seek health care, is bio-insecurity. </p><p><strong>How to promote local biosecurity</strong></p><p> Free, piped convenient water; cycles or tricycles designed for local needs and available at the individual or village level, with or without power, energy appropriate to upgrade cell phones or cooking materials, have all been designed but where are they at the population level? Night lighting by reusable energy is available globally but missing locally. We need to integrate cell phones with access to clinical care. All of these cheap useful technologies have already been invented but are not widely implemented. In addition, we need reproductive advice, including support for barrier methods for contraception and microbicides and female condoms for HIV protection. Only with local biosecurity in place, can preventive methods, whether they be microbicides, universal treatment, pre-infection treatment or other global policies, be implemented effectively.</p><p>Bio-insecurity should be removed and improvements to quality of life made available at the level of the poor woman and her family. Such attention to local needs must be a key structure of any effective HIV plan.</p><p><em>This article is part of 50.50's long running series on <a href="https://www.opendemocracy.net/5050/womens-movement-building/aids-gender-and-human-rights">AIDS Gender and Human Rights</a> exploring the ways in which global policies ignore the gender dimensions of the pandemic, and the impact this has on women's human rights. We are publishing articles daily during the 2014 World AIDS Conference in Melbourne July 20-25</em></p><p>&nbsp;</p><p>&nbsp;</p><p>&nbsp;</p><p>&nbsp;</p><fieldset class="fieldgroup group-sideboxs"><legend>Sideboxes</legend><div class="field field-related-stories"> <div class="field-label">Related stories:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> <a href="/5050/alice-welbourn/aids-2014-conference-stepping-up-pace-and-still-on-wrong-path">AIDS 2014 Conference: stepping up the pace and still on the wrong path </a> </div> <div class="field-item even"> <a href="/5050/susan-paxton/aids-2014-where-are-women-we-need-to-step-up-pace">AIDS 2014: Where are the women we need to step up the pace? </a> </div> <div class="field-item odd"> <a href="/5050/ida-susser/microbicide-success-feminism-is-essential-to-good-science">A microbicide success: feminism is essential to good science</a> </div> <div class="field-item even"> <a href="/5050/sindi-putri/indonesia-facing-life-with-hiv">Indonesia: facing life with HIV </a> </div> <div class="field-item odd"> <a href="/5050/cecilia-chung/hiv-call-for-solidarity-with-transgender-community">HIV: a call for solidarity with the transgender community </a> </div> <div class="field-item even"> <a href="/blog/email/sylvia-rowley/2009/03/01/hiv-and-womens-rights-in-uganda-why-a-new-law-would-hurt-women">HIV and women&#039;s rights in Uganda: why a new law would hurt women</a> </div> <div class="field-item odd"> <a href="/5050/silvia-petretti/hiv-in-italy-epidemic-continues-growing-among-women">HIV in Italy: the epidemic continues growing among women</a> </div> <div class="field-item even"> <a href="/5050/erica-gollub-ida-susser-zena-stein/right-to-know-women%E2%80%99s-choices-depo-provera-and-hiv">The right to know: women’s choices, Depo-Provera and HIV </a> </div> <div class="field-item odd"> <a href="/5050/maria-de-bruyn/hiv-what-kind-of-evidence-counts">HIV: what kind of evidence counts ?</a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/absence-of-evidence-does-not-mean-evidence-of-absence">Absence of evidence does not mean evidence of absence</a> </div> <div class="field-item odd"> <a href="/5050/ida-susser/hiv-fight-for-trade-related-intellectual-property-regulations">HIV: the fight for trade related intellectual property regulations</a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/end-to-aids-not-through-medication-alone">An end to AIDS?: Not through medication alone</a> </div> <div class="field-item odd"> <a href="/content/balancing-on-wheels-of-hope">Balancing on Wheels of Hope</a> </div> <div class="field-item even"> <a href="/5050/nell-osborne/against-coerced-sterilisation-resounding-victory-in-namibia">Against coerced sterilisation: a resounding victory in Namibia</a> </div> <div class="field-item odd"> <a href="/5050/jessica-horn/accepted-mishaps-faith-healing-hiv-and-aids-responses">Accepted mishaps? Faith healing, HIV and AIDS responses</a> </div> <div class="field-item even"> <a href="/5050/aziza-ahmed-jennifer-gatsi-mallet/sterilisation-fight-for-bodily-integrity">Sterilisation: the fight for bodily integrity</a> </div> <div class="field-item odd"> <a href="/5050/baby-rivona-oldri-mukuan/global-mechanism-regional-solution-ending-forced-sterilisation">Global mechanism, regional solution: ending forced sterilisation </a> </div> <div class="field-item even"> <a href="/5050/susan-paxton/positive-and-pregnant-in-asia-how-dare-you">Positive and pregnant in Asia - How dare you</a> </div> <div class="field-item odd"> <a href="/5050/louise-binder/criminal-law-hiv-and-violence-against-women">Criminal law: HIV and violence against women</a> </div> <div class="field-item even"> <a href="/5050/nada-mustafa-ali/hope-pain-and-patience-hiv-and-sex-workers">Hope, pain and patience: HIV and sex workers</a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/hiv-of-bombs-and-banks-and-transformation">HIV: of bombs and banks and transformation...</a> </div> <div class="field-item even"> <a href="/5050/andrea-von-lieven/hiv-nothing-about-us-without-us">HIV: nothing about us, without us</a> </div> <div class="field-item odd"> <a href="/5050/silvia-petretti/hiv-both-cause-and-consequence-of-violence-against-women">HIV: both the cause and the consequence of violence against women</a> </div> <div class="field-item even"> <a href="/od-russia/irina-teplinskaya/hiv-positive-in-russia-where-is-our-medication">HIV positive in Russia: where is our medication?</a> </div> </div> </div> </fieldset> <div class="field field-country"> <div class="field-label"> Country or region:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> South Africa </div> </div> </div> 50.50 50.50 South Africa 50.50 AIDS, Gender and Human Rights 50.50 Editor's Pick women's human rights women's health gender bodily autonomy 50.50 newsletter gendered poverty Zena Stein Ida Susser Sun, 20 Jul 2014 10:48:33 +0000 Ida Susser and Zena Stein 84579 at https://www.opendemocracy.net HIV: a call for solidarity with the transgender community https://www.opendemocracy.net/5050/cecilia-chung/hiv-call-for-solidarity-with-transgender-community <div class="field field-summary"> <div class="field-items"> <div class="field-item odd"> <p>With the prevalence of HIV 50 times higher than that of the general population, societal acceptance and family support are crucial to the emotional wellbeing and health outcomes of LGBT people. Cecila Chung tells her own story and calls for transgender sisterhood at the <a href="http://www.aids2014.org/">AIDS 2014 Conference</a></p> </div> </div> </div> <p>For the first time the transgender community is hosting a <a href="http://pag.aids2014.org/session.aspx?s=1239">Transgender Networking Zone</a> in the Global Village at the International <a href="http://www.aids2014.org/">AIDS Conference</a> opening this weekend in Melbourne. Titled “Trans People Step Forward!”, the zone is coordinated by a consortium of organizations including the Center of Excellence for Transgender Health, the Global Network of People Living with HIV, RED Trans and local transgender advocates, to name just a few. The first of the four day programme is dedicated to trans people living with HIV with two of the three panels focusing on trans women living with HIV: “Voices from the Global South: Life of trans women living with HIV”, “Intersection of Violence and HIV: Stories of Resilience” and “The Cultral Context of Stigma, Gender, Sex and HIV”. </p> <p>It feels like two lifetimes ago when I found myself living on the margins and at the brink of despair. I had just come out as trans to my parents who, through no fault of their own, could not accept the news and effectively turned their back on me.&nbsp; Being a college graduate did not prepare me for all the rejections, discriminations and traumas that life had instore for me. The immediate three years after I embraced my true self are not the type of experiences that I would wish on my worst enemy. There is no adjective that can adequately describe the agonizing path on which I embarked: I went from a fresh-out-of-college six-figure income earner in an investment company<strong><span> </span></strong>to unemployed due to my own internalized stigma and the lack of employment discrimination protections in California at that time, from a renter to the edge of homelessness, from being someone with a middle-class upbringing to being someone who relied on the street economy to survive, constantly exposed to the power dynamics that fuel stigma, ignorance and violence. In a span of thirty six months, I was introduced to police abuse, and physical and sexual violence; none of which was a singular episode. </p> <p>Once, when I was being cited for jaywalking by two uniformed officers.. I tried to explain that I was not planning on crossing on the red light, but the officers determined that I was “obstructing justice” and took me into custody, handcuffed, for seven hours. It was their way to teach me not to argue. They eventually released me at 4 o’clock in the morning without charging me for breaking any law.<em> <br /></em></p> <p>Sadly, my story is not unique to trans women, sex workers, women of colour or low-income women. The laws that are intended to protect us, have routinely become weapons against us.&nbsp; For example, a trans woman of colour was recently found guilty of “manifesting <a href="http://planetransgender.blogspot.com/2014/04/monica-jones-az-transgender-woman.html">prostitution</a>” in Phoenix, Arizona. </p> <p>The profiling by police, often referred to as “Walking While Trans”, is a fairly common phenomenon around the globe. There are reports of police abuse from <a href="http://www.ilga-europe.org/home/guide_europe/country_by_country/greece/transgender_arrests_and_unlawful_detention_of_the_defenders_of_their_rights_in_thessaloniki">Greece</a>, <a href="http://www.hrw.org/news/2013/07/15/being-transgender-kuwait-my-biggest-fear-flat-tire">Kuwait</a>, <a href="http://borgenproject.org/charges-against-transgender-youth-in-cameroon">Cameroon</a> and <a href="http://www.themalaymailonline.com/malaysia/article/negri-sembilan-islamic-department-crashes-wedding-for-transgender-hunt">Malaysia</a> just to name a few. </p> <p>Despite some gains in <a href="http://www.hrw.org/news/2014/06/24/europe-progress-transgender-rights">trans rights in high-income countries</a><strong>,</strong> <a href="http://www.equalitymi.org/media-center/media-releases/national-report-hate-violence-against-lesbian-gay-bisexual-transgender-0">violence against trans women has not been reduced</a>.&nbsp; According to the Trans* Violence Tracking <a href="http://www.transviolencetracker.org/">Portal</a>, we make up 1% to 1.5% of the world’s population, but we are 400 times more likely to be assaulted or murdered than the rest of the population. </p> <p>To whom can we turn for help if we cannot trust those who are supposed to protect us? </p> <p>Some of the voilence trans women face has made them more vulnerable to HIV, as more evidence points to violence as a driver of HIV.&nbsp; For example, trans female sex workers are more likely to be economically disenfranchised; they often face structural and institutional violence such as police harassment and criminalization as well as sexual and phycial violence perpetrated by either their <a href="http://journals.lww.com/jaids/Fulltext/2013/08010/Client_Demands_for_Unsafe_Sex___The_Socioeconomic.17.aspx">clients, who often demand unsafe sex</a>, or their partners. </p> <p>The mid-1990s was a time of reconciliation for me. It was also redemption and forgiveness. Since I found out I was HIV positive in 1993, I gave up hope and the will to live. Despite my grim diagnosis at a time when effective treatment was unavailable, I survived. In 1995, after being brutally attacked by two men, my family began to come back into my life. By 1996, protease inhibitors (HIV medication) became widely used, and my death sentence was commuted to a lifetime of pills and symptom management. This would not have been possible had I not lived in one of the world’s most progressive cities - San Francisco - where trans-sensitive care is possible. Most importantly, having my family back in my life and the opportunity to work again gave me the hope and the will I needed to thrive.<em> <br /></em></p> <p>Societal acceptance and family <a href="http://familyproject.sfsu.edu/files/FAP_Family%20Acceptance_JCAPN.pdf">support</a> are both crucial to the emotional wellbeing, the quality of life and health outcomes of lesbian, gay, bisexual and trans (LGBT) people. With our worldwide burden of <a href="http://www.reuters.com/article/2014/07/11/us-health-aids-who-idUSKBN0FG0FY20140711">HIV prevalence 50 times higher</a> than that of the general population, and the statistics of stigma, discrimination and violence stacked against trans women, we must glimpse beyond the pitch-dark cloud for the silver lining. Of course, improving providers’ attitudes, and eradicating stigma and discrimination remain top <a href="http://www.hivadvocacynow.org/">priorities</a>. As the Global Update on HIV Treatment by <a href="http://www.unaids.org/en/media/unaids/contentassets/documents/unaidspublication/2013/20130630_treatment_report_en.pdf">WHO</a> continues to confirm the disparity and inequity in ARV access by key affected populations, efforts to mobilize the community at a grassroots level to demand global action is much needed. But it cannot happen without building solidarity among trans women worldwide. </p> <p>As the movement of women with HIV is becoming more inclusive of trans women’s <a href="http://www.unaids.org/en/resources/documents/2014/name,91776,en.asp">issues</a>, trans women will need to become more inclusive of one another.&nbsp; </p> <p>Most trans women, especially trans women of colour, share an unspoken bond – the courage to live openly as our authentic selves despite the odds of violence, discrimination and rejection. The resilience and wisdom of those of us who <a href="http://www.ncbi.nlm.nih.gov/pubmed/24328655">survived</a> and thrived against all odds gives us much to share with other trans sisters. “Each One Teach One”, as the African proverbial phrase goes, from the global north to the global south and from the west to the east, community empowerment requires trans women of all diversity to tell our stories, to mentor one another and to nuture the bonds of sisterhood. Perhaps it will take years for some of us to reconcile with our families, but we should not stop at building our own chosen family and to remind one another that our lives, our bodies and our stories matter. With the absence of a cure for AIDS, the only medicine that is more powerful than any anti-retro viral therapy is hope and the unconditional support that we can offer one another. </p> <p>There is no better time to unite and amplify our voices than now. I invite you to join me in the <a href="http://pag.aids2014.org/session.aspx?s=1239">Transgender Networking Zone</a> to share stories and to brainstorm on strategies to eliminate discrimination, to address inequities, to end stigma and violence, and to increase access to health services. </p> <p>Last but not least, join me to celebrate our resilience.</p><p><em>This article is part of 50.50's long running series on <a href="https://www.opendemocracy.net/5050/womens-movement-building/aids-gender-and-human-rights">AIDS Gender and Human Rights</a> exploring the ways in which global policies ignore the gender dimensions of the pandemic, and the impact this has on women's human rights. We are publishing daily during the 2014 World AIDS Conference in Melbourne July 20-25.</em></p><fieldset class="fieldgroup group-sideboxs"><legend>Sideboxes</legend><div class="field field-related-stories"> <div class="field-label">Related stories:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> <a href="/5050/alice-welbourn/aids-2014-conference-stepping-up-pace-and-still-on-wrong-path">AIDS 2014 Conference: stepping up the pace and still on the wrong path </a> </div> <div class="field-item even"> <a href="/5050/sindi-putri/indonesia-facing-life-with-hiv">Indonesia: facing life with HIV </a> </div> <div class="field-item odd"> <a href="/5050/susan-paxton/aids-2014-where-are-women-we-need-to-step-up-pace">AIDS 2014: Where are the women we need to step up the pace? </a> </div> <div class="field-item even"> <a href="/5050/dee-borrego/who-was-rita-hester">Who was Rita Hester? </a> </div> <div class="field-item odd"> <a href="/5050/jessica-horn/accepted-mishaps-faith-healing-hiv-and-aids-responses">Accepted mishaps? Faith healing, HIV and AIDS responses</a> </div> <div class="field-item even"> <a href="/5050/celeste-r-west/trans-women-in-feminism-nothing-about-us-without-us">Trans women in feminism: nothing about us without us </a> </div> <div class="field-item odd"> <a href="/5050/silvia-petretti/hiv-both-cause-and-consequence-of-violence-against-women">HIV: both the cause and the consequence of violence against women</a> </div> <div class="field-item even"> <a href="/5050/andrea-von-lieven/hiv-nothing-about-us-without-us">HIV: nothing about us, without us</a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/hiv-of-bombs-and-banks-and-transformation">HIV: of bombs and banks and transformation...</a> </div> <div class="field-item even"> <a href="/5050/maria-de-bruyn/hiv-what-kind-of-evidence-counts">HIV: what kind of evidence counts ?</a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/hiv-time-for-us-to-put-its-own-house-in-order">HIV: time for the US to put its own house in order ? </a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/hiv-and-global-plan-turning-tide-or-wash-out-for-women">HIV and the Global Plan: turning the tide or a wash-out for women?</a> </div> </div> </div> </fieldset> 50.50 50.50 50.50 Women's Movement Building 50.50 AIDS, Gender and Human Rights 50.50 Editor's Pick sexual identities gender bodily autonomy 50.50 newsletter Cecilia Chung Sat, 19 Jul 2014 10:56:27 +0000 Cecilia Chung 84575 at https://www.opendemocracy.net AIDS 2014 Conference: stepping up the pace and still on the wrong path https://www.opendemocracy.net/5050/alice-welbourn/aids-2014-conference-stepping-up-pace-and-still-on-wrong-path <div class="field field-summary"> <div class="field-items"> <div class="field-item odd"> <p>As the 20th International <a href="http://www.aids2014.org/">AIDS Conference</a> opens in Melbourne this weekend, Alice Welbourn reflects on how global policies still fail to acknowledge the gender dimensions of this pandemic, or take into account the new broader medico-ethical debates which echo many of the concerns of women living with HIV.</p> </div> </div> </div> <p>Scientists, politicians, policy-makers, academics, doctors, celebrities – and those few activists who can afford it – are gathering for the 20th World AIDS <a href="http://aids2014.org/">Conference</a> which opens in Melbourne this weekend. Meeting to discuss the global <a href="http://www.who.int/campaigns/aids-day/2013/event/en/">pandemic</a>, it is already apparent that the theme and <a href="http://aids2014.org/Default.aspx?pageId=676">objectives</a> offer nothing new in the global response to AIDS, other than to scale up what is already known to work - for some. </p><p>There is no cure, there is no vaccine, and neither is on the near horizon. Yet more women than ever have HIV and many are still dying. There is also an increasing tendency of policy makers to promote treatments to all people with HIV - and even now to those who <a href="http://www.bbc.co.uk/news/health-28264436">don’t</a> - whether they actually need it already for themselves or not; and for governments to introduce <a href="http://www.sxpolitics.org/?p=9376">criminalisation</a> as a means of controlling those at the margins of their societies whom they see as a “problem”. Both these policies include, and affect, women with <a href="http://www.hivlawcommission.org/resources/report/HIV&amp;Law-Factsheet-EN.pdf">HIV</a>. </p><p>In 2010 and 2012 the conference straplines were <em><a href="http://aids2010.org/">Rights Here, Right Now</a></em> and <em><a href="http://aids2012.org/">Turning the Tide Together</a></em>. This year’s strapline is <em><a href="http://aids2014.org/">Stepping up the Pace. </a></em>The conference <a href="http://www.aids2014.org/Default.aspx?pageId=676">website</a> promises us that this “<em>reflects the crucial opportunity that AIDS 2014 will provide for mobilizing stakeholders, joining forces and building on the present momentum necessary to change the course of the epidemic</em>.” However, <a href="https://www.gov.uk/government/policies/improving-the-health-of-poor-people-in-developing-countries">DFID</a>, which takes the UK government lead in international AIDS work,&nbsp; has (at the time of writing) not committed to sending a representative to the conference, the overall delegates number a mere 12,000 rather than the 22,000 who gathered in <a href="http://aids2010.org/">Vienna</a> in 2010, and many leading activist colleagues around the world, such as <a href="http://hivpolicyspeakup.wordpress.com/about/">Silvia Petretti </a>&nbsp;and <a href="http://www.justassociates.org/en/bio/martha-tholanah">Martha Tholanah,&nbsp;</a> cannot attend this year due to lack of funds.&nbsp; It feels as if this Melbourne strapline might more aptly have been “<em>S</em><em>lowing Down the Pace</em>". </p> <p>In 2010 openDemocracy <a href="http://www.opendemocracy.net/5050">50.50</a> launched the <a href="http://www.opendemocracy.net/5050/aids-2010-rights-here-right-now">AIDS, Gender and Human Rights </a>&nbsp;platform, and has published more than 60 articles providing critical perspectives and analysis of the key issues in HIV and AIDS which remain un-addressed by the grand global policies. The authors of these articles are leading women human rights activists and academics from Asia, Africa, Europe and North America, who are living and working with these issues on a daily basis.&nbsp;&nbsp; </p> <p>The different gendered perspectives from which authors have addressed the pandemic on 50.50&nbsp; are diverse, ranging from the use of <a href="http://www.opendemocracy.net/5050/erica-gollub-ida-susser-zena-stein/right-to-know-women%E2%80%99s-choices-depo-provera-and-hiv">condoms</a> to <a href="http://www.opendemocracy.net/5050/louise-binder/criminal-law-hiv-and-violence-against-women">criminalisation</a>, from <a href="http://opendemocracy.net/5050/alice-welbourn/gender-politics-of-funding-women-human-rights-defenders">funding</a> to <a href="http://www.opendemocracy.net/5050/anca-nitulescu/exploring-violence-as-consequence-of-hiv">fear</a>, from <a href="http://www.opendemocracy.net/5050/heidemarie-f-kremer/usa-banning-people-with-hiv-from-attending-aids-2012-conference">immigration</a> to <a href="http://www.opendemocracy.net/5050/alice-welbourn/hiv-time-for-us-to-put-its-own-house-in-order">indigenous</a> rights, from <a href="http://www.opendemocracy.net/5050/susan-paxton/positive-and-pregnant-in-asia-how-dare-you">reproduction</a> to <a href="http://www.opendemocracy.net/5050/jessica-horn/accepted-mishaps-faith-healing-hiv-and-aids-responses">religion</a>, from <a href="http://www.opendemocracy.net/5050/jennifer-gatsi-mallet-aziza-ahmed-mindy-roseman/are-hospitals-safe-for-women-living-with-hiv">sterilisation</a> to sexual <a href="http://www.opendemocracy.net/5050/tsitsi-b-masvawure/let%E2%80%99s-get-real-female-sexual-pleasure-and-hiv-prevention">pleasure</a>, from “anecdote” to <a href="http://www.opendemocracy.net/5050/alice-welbourn/absence-of-evidence-does-not-mean-evidence-of-absence">evidence</a> and more. The underlying theme of this dialogue has been a call for a women’s rights perspective based on the lived experiences of women living with HIV. </p><p>The HIV Vaccines and Microbicides Resource Tracking Working Group has released a <a href="http://hivresourcetracking.org/sites/default/files/RTWG2014.pdf">report</a> today revealing a 4% drop ( US$1.26 billion ) in funding for HIV prevention research and development in 2013.&nbsp;<span>&nbsp;</span>As times become more austere, there is little evidence that our voices are being listened to. The issues we have been raising are as relevant and topical as ever. Yet with tightened belts come increased top-down efforts at medicalisation of the response and fewer spaces for the voices of “grassroots” experiences to be heard - including at this year's Conference. </p> <p>These issues are interconnected, touching as they do on the rich array of the shared <a href="http://www.opendemocracy.net/5050/alice-welbourn/positive-women-human-rights-defenders">human</a> condition of women living with HIV around the world. Whilst the details of how these play out may differ from country to continent, it comes as no surprise to me as someone who has been living with HIV for 22 years, at least, to recognise that there are far more commonalities than differences around the world when it comes to women’s experiences of living with HIV. </p> <p>Take intimate partner violence. It was only back in <a href="http://www.opendemocracy.net/5050/alice-welbourn/absence-of-evidence-does-not-mean-evidence-of-absence">2010</a> that the first “evidence” emerged that intimate partner violence increases women’s vulnerability to acquiring HIV. Of course women with HIV knew that long before then, but without the 'evidence' to prove it, this 'anecdotal' information did not cross the radar of policy makers. As Dr Shirin Heidari argued in the Women’s Networking Zone,&nbsp; “absence of evidence does not mean evidence of <a href="http://www.opendemocracy.net/5050/alice-welbourn/absence-of-evidence-does-not-mean-evidence-of-absence">absence</a>”. Yet it is only now that another crucial piece of the 'evidence' jigsaw is starting to emerge: namely that women with HIV also often <a href="http://www.unaids.org/en/media/unaids/contentassets/documents/unaidspublication/2014/JC2602_UniteWithWomen_en.pdf">experience</a> intimate partner violence, and violence in health-care <a href="http://www.apnplus.org/main/share/publication/APN+%20Reproductive%20and%20Maternal%20Health%20Report%20A4%2013%20April.pdf">settings</a>, as a <em>result</em> of their diagnosis.&nbsp; So here we have an issue that has long been recognised by women on the ground. Yet without the formal evidence base to prove it, the grand global <a href="http://www.zero-hiv.org/call-to-action/">policies</a> which emanate from experts who have proclaimed that an “end to AIDS” is just around the corner, still ignore the existence - let alone the relevance -&nbsp; of gender-based <a href="http://www.rhm-elsevier.com/article/S0968-8080(12)39638-9/fulltext">violence</a> since diagnosis.&nbsp; </p> <p>Whilst intimate partner violence experienced by women <em>before</em> diagnosis <em>is</em> now starting to be on policy-makers’ radar,&nbsp; there will still be scant discussion in Melbourne of its existence as a <em>consequence</em> of diagnosis, except for the sessions presented by the few women living with HIV who have a <a href="http://www.aids2014.org/default.aspx?pageId=624">platform</a> in the main conference. These will be supplemented by sessions in the Women’s Networking <a href="http://www.youtube.com/watch?v=Ah40URQz0SM">Zone</a> free space of the Global Village, where <a href="http://www.womensnetworkingzone.org/overview/wnz-2014-overview">activists</a> focus their under-funded efforts, and where it has been said that the real conference takes place. </p> <p>Another issue we have raised in our <a href="http://www.opendemocracy.net/5050/aids-2010-rights-here-right-now">series of articles</a> on AIDS, gender and human rights, is the question of when to treat women with HIV. The WHO HIV Department and its colleagues would have women with HIV dosed up with medication for life, regardless of whether we actually <a href="http://www.opendemocracy.net/5050/alice-welbourn-louise-binder/compulsion-versus-compassion-hiv-treatment-for-women-and-children">need</a> the medication or not when we start it. This has ethical issues, since the primary reason they give for treating women is to protect their partners and further children from HIV. This is with no discussion of how women will then manage to negotiate condom use with their partners – who could still give the women an STI or an unplanned pregnancy.&nbsp; It fails to recognise that women can already go on safer short-term treatment during <a href="http://positivelyuk.org/pregnancy/">pregnancy</a>, to protect future babies from HIV, with normal delivery and 99% HIV-free babies. </p> <p>These policies are about 'one-size fits all' convenience for health ministries and clinic staff, rather than about the lived realities, hopes and desires of women for whom the very prospect of being found with ARV medication is still terrifying. Small wonder that the much-heralded national roll-out of life-long treatment for all women with HIV in Malawi has actually been a mess, with a five-fold <a href="http://journals.lww.com/aidsonline/Abstract/2014/02200/Retention_in_care_under_universal_antiretroviral.15.aspx">difference</a> in adherence between women who started medication when they actually needed it for their own health, rather than when they had it imposed upon them for global-policy-driven convenience. We hope to raise these issues on a panel in the Global <a href="http://aids2014.org/Default.aspx?pageId=621">Village</a> with key UN officials next week and will report on how this goes. They will also be addressed in the Women’s Networking <a href="http://www.womensnetworkingzone.org/overview/objectives">Zone</a>. </p> <p>Thankfully other sectors of the healthcare profession are starting to stand up and question the dominance of the evidence base, and the assumption that medicalisation is always a good thing. A new movement of physicians in the USA held a conference at the Dartmouth <a href="http://tdi.dartmouth.edu/about/history">Institute</a> last year, entitled <a href="http://www.preventingoverdiagnosis.net/">Preventing Overdiagnosis</a>, calling for a revision of the over-use of various medical procedures and treatments to ensure that treatment is free from harm and truly <a href="http://www.choosingwisely.org/about-us/">necessary</a>. The second conference, which will be held in Oxford this September, with a line-up of prominent medical <a href="http://www.preventingoverdiagnosis.net/">names</a>, is being backed by the British Medical Journal's&nbsp; <a href="http://www.preventingoverdiagnosis.net/">Too Much Medicine</a> campaign. One recent example of these concerns, highlighted by the UK Chief Medical Officer, is about over-use and misuse of <a href="http://www.nature.com/news/policy-an-intergovernmental-panel-on-antimicrobial-resistance-1.15275">antibiotics</a>, which is likely to lead to drug-resistant microbial strains soon developing. These dialogues augment my concerns regarding over-medication of HIV.</p> Similarly, a recent article in the BMJ by Dr Trish <a href="http://www.bmj.com/node/758585">Greenhalgh</a> and colleagues has flagged up the limitations of the 'evidence-based' medicine model when applied in a mechanistic, one-size fits all way.&nbsp; Instead they argue that real evidence-based medicine “makes the ethical care of the patient its top priority; demands individualised evidence in a format that clinicians and patients can understand; is characterised by expert judgment rather than mechanical rule following; shares decisions with patients through meaningful conversations; builds on a strong clinician-patient relationship and the human aspects of care; and applies these principles at community level for evidence based public health.” This is music to my ears. In the wider medical world, these debates, which echo the concerns of all our 50.50 authors <a href="http://www.opendemocracy.net/5050/aids-2010-rights-here-right-now">writing</a> on HIV and AIDS, herald a glimpse of change.&nbsp; But this broader picture debate is very unlikely to be aired at the conference. <p>The book <a href="http://www.berghahnbooks.com/title.php?rowtag=MosseAdventures">Adventures in Aidland</a>, edited by anthropologist <a href="http://www.soas.ac.uk/staff/staff31472.php">David Mosse </a>&nbsp;and a recent refreshing book by former DFID senior social development adviser <a href="http://www.routledge.com/books/details/9780415656740/">Rosalind Eyben</a>, both highlight how the structures of bureaucratic organisations can colonise the minds of those who work for them in ways which all too frequently lose touch with the complex reality of our real-world lived experiences. What clinical psychologist <a href="http://www.compassionatemind.co.uk/resources/video1.htm">Paul Gilbert </a>&nbsp;and others call the threat and drive processes of organising, of simplifications, standardisations and harmonisations, are constantly at odds with - and are given priority over - the processes of nurture, care, creativity and safety which we all need. </p> <p>For sure, the threat of AIDS and the drive to overcome it are understandable. But this needs to be balanced by the humane part of our brains to produce an effective, holistic, sustainable and caring response. I try my best to remember that all politicians and policy-makers too are human, and wanting to do the best for humanity. Yet our articles on 50.50 over the years have repeatedly highlighted the bureaucratic nightmares that many of the organisations of politicians, policy-makers and academics have created for women with HIV.&nbsp; </p> <p>The AIDS 2014 <a href="http://aids2014.org/Default.aspx?pageId=676">Conference</a>&nbsp; starts on 20 July. The title of its <a href="http://aids2014.org/Default.aspx?pageId=734">declaration</a> is “Nobody Left Behind.” It took quite a tussle to get the fourth paragraph, which mentions women’s rights&nbsp; and gender equity, in there at all, but we succeeded at the eleventh hour. The same issues that we have written about over the years will once more be on <em>our</em> agendas to raise at this conference, because they are still not being addressed in global policies.</p><p>Will women's human right to participate fully in key debates that profoundly affect our lives at last be realised in Melbourne? Will all those diverse stakeholders listed above who attend the conference begin to listen to, connect with and respond to what it means to be a woman living with HIV? After all we do now represent 55% of the global <a href="http://www.unaids.org/en/media/unaids/contentassets/documents/epidemiology/2013/gr2013/201309_epi_core_en.pdf">adult</a> numbers of people living with HIV. </p> <p>As Hippocrates told us, “it is more important to know what sort of person has a disease than to know what sort of disease a person has.” I dearly hope that those with the great privilege of having a presence and a platform at the conference this week will heed Hippocrates’ profound words as well as our own.</p><p><em>This article is part of 50.50's long running series on <a href="https://www.opendemocracy.net/5050/womens-movement-building/aids-gender-and-human-rights">AIDS Gender and Human Rights</a> exploring the ways in which global policies ignore the gender dimensions of the pandemic, and the impact this has on women's human rights. We are publishing daily during the 2014 World AIDS Conference in Melbourne July 20-25. </em></p> <p>&nbsp;</p> <p>&nbsp;</p> <p>&nbsp;</p><fieldset class="fieldgroup group-sideboxs"><legend>Sideboxes</legend><div class="field field-related-stories"> <div class="field-label">Related stories:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> <a href="/5050/maria-de-bruyn/hiv-what-kind-of-evidence-counts">HIV: what kind of evidence counts ?</a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/absence-of-evidence-does-not-mean-evidence-of-absence">Absence of evidence does not mean evidence of absence</a> </div> <div class="field-item odd"> <a href="/5050/sindi-putri/indonesia-facing-life-with-hiv">Indonesia: facing life with HIV </a> </div> <div class="field-item even"> <a href="/5050/susan-paxton/positive-and-pregnant-in-asia-how-dare-you">Positive and pregnant in Asia - How dare you</a> </div> <div class="field-item odd"> <a href="/5050/heidemarie-f-kremer/usa-banning-people-with-hiv-from-attending-aids-2012-conference">USA: banning people with HIV from attending the AIDS 2012 conference </a> </div> <div class="field-item even"> <a href="/5050/jennifer-gatsi-mallet-aziza-ahmed-mindy-roseman/are-hospitals-safe-for-women-living-with-hiv">Are hospitals safe for women living with HIV?</a> </div> <div class="field-item odd"> <a href="/5050/aziza-ahmed-jennifer-gatsi-mallet/sterilisation-fight-for-bodily-integrity">Sterilisation: the fight for bodily integrity</a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/end-to-aids-not-through-medication-alone">An end to AIDS?: Not through medication alone</a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn-louise-binder/compulsion-versus-compassion-hiv-treatment-for-women-and-children">Compulsion versus compassion: HIV treatment for women and children </a> </div> <div class="field-item even"> <a href="/5050/jessica-horn/accepted-mishaps-faith-healing-hiv-and-aids-responses">Accepted mishaps? 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So where are the community delegates at the International AIDS conference ?</p> </div> </div> </div> <p>As the representative for the International Community of Women living with HIV on the Conference Coordinating Committee for <a href="http://www.aids2014.org/">AIDS2014</a>, my aim over the past two years was to get as many women living with HIV from as diverse backgrounds as possible onto the International AIDS Conference programme.&nbsp; I have been successful in terms of the plenaries and symposia, with over a dozen women living with HIV, from Africa, Asia, Central America and the Pacific presenting. They include, Dr Lydia <a href="http://aids2014.org/Default.aspx?pageId=624">Mungherera</a>, Uganda, who founded the award winning "Mama's Club" in Uganda; Jenifer Gatsi, who has been working with Namibian women to challenge their government over forced sterilizations, and <a href="http://aids2014.org/Default.aspx?pageId=624">L'Orangelis</a> Thomas Negron from Puerto Rico, who was born with HIV and started a blog "Ovaries of Steel". </p> <p>However, in terms of the number of conference delegates who are women living with HIV, I am disappointed to say the least, and I now start to question the value of much of the work that is carried out under the guise of the response to HIV. </p> <p>Only one in every thousand of the 12,000 delegates at AIDS 2014 will be a woman living with HIV who has been fully funded by the International AIDS Conference to attend. This is an appallingly low figure. Although the scholarship committee has quotas for women and for people living with HIV, these categories are not cross tabulated, which has resulted in proportionatley much higher numbers of HIV-positive men and HIV-negative or status-undisclosed women being awarded scholarships than HIV-positive women. Men living with HIV were twice as likely to be awarded a scholarship than women living with HIV. Obviously there were fewer scholarship applications by women living with HIV than those of other applicants. But does that mean we should exclude many of the women working at grassroots level from this conference? </p> <p>Time and again during the planning for this conference I have heard that we need to bring the science back into the AIDS conference, but is that really what we need?&nbsp; Yes, we are closer to a <a href="http://au.ibtimes.com/articles/555518/20140612/hiv-cure-resistance-white-blood-cells-made.htm#.U5rda7FaXmY">cure for HIV</a> than ever before.&nbsp; Yes, we can stop people dying from HIV if they get access to treatment.&nbsp; However, the reality is that only one in three people on the planet who need them has access to <a href="http://www.unaids.org/en/resources/campaigns/globalreport2013/factsheet/">antiretrovirals</a> (ARVs).&nbsp; Why?&nbsp; Because of the stigma that still surrounds HIV 30 years after it was detected.&nbsp; How do we shift this barrier that stops people from wanting to know their status and taking action about their HIV-positive status?&nbsp; The only way is to involve the global community of people living with HIV.&nbsp; </p> <p>Women living with HIV are diagnosed HIV-positive at higher rates than men are, often at antenatal care clinics during pregnancy.&nbsp; <a href="http://www.avert.org/who-guidelines-pmtct-breastfeeding.htm">WHO guidelines</a> for pregnant women living with HIV, launched last year, promote "<a href="http://www.opendemocracy.net/5050/alice-welbourn-louise-binder/compulsion-versus-compassion-hiv-treatment-for-women-and-children">Option</a> B+", which offers anti-retroviral therapy to women at point of diagnosis, and recommends continuing ARVs for life, regardless of CD4 count or clinical stage. This was hailed as a breakthrough on how to eliminate transmission of HIV to newborn infants and keep their mothers alive.&nbsp; It backfired<strong>.</strong>&nbsp; </p> <p>Recent research in Malawi indicates that women who are put on ARVs at the point of diagnosis during pregnancy are <a href="http://journals.lww.com/aidsonline/Abstract/2014/02200/Retention_in_care_under_universal_antiretroviral.15.aspx">five times more likely to be lost to follow up</a> than other women. This means women who are being diagnosed and immediately put on ARVs are turning their back on health care centres. Why?&nbsp; Anecdotal evidence indicates that women are afraid of the stigma, afraid to go home and be the first person in the family to be diagnosed, afraid they will be blamed, afraid they may be beaten up because of it. ICW members have heard of women who have thrown their ARVs in the rubbish bin as they leave the clinic for fear of them being found in their possession.&nbsp; </p> <p>So yes, we need the science, but we also desperately need the input of women living with HIV to talk about ways to combat stigma and discrimination on the ground. </p> <p>Over the last months I have seen a myriad of policy documents and <a href="http://cid.oxfordjournals.org/content/59/suppl_1/S3.full.pdf">statements</a> on how to respond to the <a href="http://www.huffingtonpost.com/matthew-kavanagh/leadership-to-end-aidscuo_b_5546025.html">epidemic</a>, but the reality is that it can only be successfully tackled by engaging communities of women living with HIV. Women constitute over <a href="http://www.unaids.org/en/media/unaids/contentassets/documents/epidemiology/2013/gr2013/UNAIDS_Global_Report_2013_en.pdf">half</a> of the world's population of people living with HIV. Women are <a href="http://www.who.int/gender/hiv_aids/en/">more vulnerable</a> to HIV. Women face more <a href="http://www.gnpplus.net/regions/files/AIDS-asia.pdf">discrimination</a> after diagnosis with HIV than men do, and are physically and verbally abused more frequently because of their HIV status than men are. </p> <p>Women need to be involved in the response. </p> <p>We need trained positive women <a href="http://positivelyuk.org/pregnancy/">counsellors</a> at every testing site where significant numbers of women are diagnosed with HIV, so that those newly diagnosed can meet somebody in the same situation, and we can start to break down the stigma and barriers at the point of diagnosis. </p> <p>Every two years, scores of people around the world work towards creating a new International AIDS Conference programme.&nbsp; Has the AIDS Conference become a self-perpetuating industry ?&nbsp; Is it possible to halt writing more and more policy documents and start putting these resources into breaking down the stigma at grassroots level with peer-led programmes like <a href="http://www.steppingstonesfeedback.org/">Stepping Stones</a> and <a href="http://www.mamasclubonline.com/">mother's clubs</a>? </p> <p>The upcoming conference has a small but powerful line-up of HIV-positive women presenters from all over the world. Unfortunately what it does not have is a large contingency of women living with HIV to meaningfully engage in the debates and discussions that are really needed at every level. </p> <p>Perhaps with the realisation of the imbalance in HIV-positive female delegates at the conference, we will do better next time. We need to ensure there is positive discrimination towards women living with HIV, enabling them to speak in the public arena about how women on the ground are making a real difference in tackling the response to HIV.</p><p><em>This article is part of 50.50's long running series on <a href="https://www.opendemocracy.net/5050/womens-movement-building/aids-gender-and-human-rights">AIDS Gender and Human Rights</a> exploring the ways in which global policies ignore the gender dimensions of the pandemic, and the impact this has on women's human rights. We are publishing daily during the 2014 World AIDS Conference in Melbourne July 20-25. </em></p> <p>&nbsp;</p><fieldset class="fieldgroup group-sideboxs"><legend>Sideboxes</legend><div class="field field-related-stories"> <div class="field-label">Related stories:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> <a href="/5050/alice-welbourn/aids-2014-conference-stepping-up-pace-and-still-on-wrong-path">AIDS 2014 Conference: stepping up the pace and still on the wrong path </a> </div> <div class="field-item even"> <a href="/5050/sindi-putri/indonesia-facing-life-with-hiv">Indonesia: facing life with HIV </a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/absence-of-evidence-does-not-mean-evidence-of-absence">Absence of evidence does not mean evidence of absence</a> </div> </div> </div> </fieldset> 50.50 50.50 50.50 AIDS, Gender and Human Rights 50.50 Editor's Pick women's movements women's human rights women's health 50.50 newsletter Susan Paxton Fri, 18 Jul 2014 08:07:33 +0000 Susan Paxton 84529 at https://www.opendemocracy.net Indonesia: facing life with HIV https://www.opendemocracy.net/5050/sindi-putri/indonesia-facing-life-with-hiv <div class="field field-summary"> <div class="field-items"> <div class="field-item odd"> <p>Strategies, no matter how well intentioned, are not enough without the knowledge, insights and experiences of people with HIV to translate them into effective and rights-based practice. Sindi Putri shares her own experience in Indonesia<em>.</em></p> </div> </div> </div> <p>The 20th <a href="http://www.aids2014.org/">International AIDS Conference</a> opens in Melbourne this weekend, and I am going to be there as a member of the community delegation from a 'middle income country', Indonesia. I want to hear about the experiences from other countries of the ' responses to AIDS, especially about anti-retroviral (ARV) HIV medication and how the strategic use of ARVs is implemented. I also hope that I can contribute to the voices of people living with HIV, so that together we can build a better strategy for effective AIDS responses. </p> <p>On December 2013, Indonesia implemented the <a href="http://apps.who.int/iris/bitstream/10665/75184/1/9789241503921_eng.pdf?ua=1">Strategic Use of ARVs</a> (SUFA) in 13 districts. Its goal is to achieve <a href="http://www.unaids.org/en/media/unaids/contentassets/documents/unaidspublication/2010/jc2034_unaids_strategy_en.pdf">“Zero New Related Deaths, Zero New Transmission and Zero Discrimination”</a>. The idea is that all people with HIV in Indonesia should know their status and receive quality HIV medication, irrespective of their <a href="http://i-base.info/guides/starting/cd4-count-and-risk-of-illness">CD4</a> count (the blood cell count used), so their <a href="http://i-base.info/ttfa/section-2/214-how-cd4-and-viral-load-are-related/">viral load</a> - which measures the success of the ARVs in suppressing onward infectivity - will become undetectable. </p> <p>The three strategies to implement <a href="http://apps.who.int/iris/bitstream/10665/75184/1/9789241503921_eng.pdf?ua=1">SUFA</a> are scaling up quality testing, early quality treatment, and monitoring of quality of treatment. My organization, Indonesia AIDS Coalition, is one of a few organizations in Indonesia which overseea the implementation of policy, and whilst it may sound like a good and bold strategy in principle, it does have ethical and implementational problems. I can explain why in relation to my own experiences. </p> <p>I learnt that I had HIV in 2004, a year after I had experienced sexual violence. In 2004, information about HIV and AIDS was still very limited. When the doctor told me, he didn’t say anything about what I should do, what medicine I could take, or give me any information about it. He just told me “yes, you are HIV positive”. I didn’t know what to do, I felt like my world had disappeared, so I tried to forget this information and continued my life like others. I was in denial, so I worked full time, often late, sometimes forgetting to eat. In October 2009, I collapsed and was hospitalized for many months without knowing why. I never thought it was because of my HIV until one day, in February 2010, a doctor suggested I take an HIV test. With a brave heart, I was tested, hoping that the result would be negative. However everything that had happened to me in the past came into my head again. Two weeks after the test, I received the result. It stated, once more, that I do have HIV. </p> <p>The doctor referred me to another doctor, saying that I had to move to another hospital because this hospital could not accept people with HIV. That was my first rejection from healthcare providers. I felt that life was going to be hard from that day on. Luckily, I then met a kind doctor who supported me. In the next hospital, all the nurses gave me the support to face the days ahead. </p> <p>But still I couldn’t face my mother, my family or my friends. It was very hard for me. </p> <p>While I was hospitalized, I kept thinking “If I had got enough information earlier, if I had known that there was HIV medicine to take, I would never have become this sick.” Once discharged, I quit my job because I felt there was no place there for me anymore. I felt very insecure about meeting people. Instead, I found out more about HIV and started working with a local ngo in Indonesia. </p> <p>Anti-retrovirals in Indonesia have been free for people with HIV <a href="http://www.aidsindonesia.or.id/news/1353/3/01/06/2010/Akankah-Obat-Gratis-Dilepas-ke-Pasar-Bebas#sthash.YVVMBwpF.dpbs">since 2004</a>, but I didn't start taking ARVs and other related medication until 2010, when my CD4 count was only 14. In the UK, HIV medication is recommended below CD4 350. After three months, even though I took all the medication, I got <a href="http://www.nhs.uk/medicine-guides/pages/MedicineSideEffects.aspx?condition=Bacterial%20infections&amp;medicine=co-trimoxazole&amp;preparation=">Steven Johnson syndrome</a> because of one of the medicines, so had to be hospitalized again. For a few months I had managed alright, but then after my treatment for Steven Johnson, I became severely anaemic, because of one of my other HIV medications. Again I needed to be admitted. My doctor decided to change my medication. However three months later, I developed peripheral neuropathy, a side effect of the new medication, which causes tingling and numbness in hands and feet. I was referred to a new doctor, this time for&nbsp; “2nd line” medication, used when the “1st line” options fail. But that doctor said that I couldn’t change to 2nd line therapy, because it was very expensive and limited.&nbsp; She said I had to continue as before, even though the medication I was taking is only recommended for six months at most, and I couldn’t cope with the side effects. </p> <p>After six months of misery, I decided to stop the medication because it was torturing my body, even though I knew all the risks of stopping. Five months later, in February 2013, I collapsed and had to be admitted again, I almost gave up.&nbsp; I told this doctor that I had HIV and he asked me what medicine I took. My CD 4 count had fallen from 157 to 48. I was sick for almost two months and had to stay bedridden. However by now a new medication (tenofovir) had been accepted as a 1st line therapy in Indonesia. So I started ARVs again in April 2013, with this included. For two weeks I felt dizzy, lost appetite, and had nausea, but then slowly improved. My CD4 count increased to 151 by July 2013, and in December 2013 my viral load <em>became undetectable.&nbsp;</em> </p> <p>I have heard many similar medication stories from others living with HIV in Indonesia. I don’t want other people living with HIV to have the same experiences as I have had. I wish that more doctors knew and understood what patients have been through with all the medication. I wish that we could have many choices of affordable ARV medicines in Indonesia, instead of excuses that we cannot have better treatment because the medicines are expensive. And it is better to know your status sooner rather than later.&nbsp;<strong> <br /></strong></p> <p>So how does this experience relate to the SUFA programme ? First, by implementing SUFA, the number of people with HIV taking ARVs was intended to increase, but the national budget to buy ARVs has been cut. Next, not all people with HIV, health providers, or even doctors, understand how to take medication. Recently, someone with HIV died because he drank the Silica Gel preservatives in the bottle because the doctor instructed him to drink all the medicine. Thirdly, lack of information about SUFA amongst doctors also causes problems because many people with HIV are ready to take the medicine, but doctors still adhere to the older guidance that people should start to take ARVs if their CD4 count is under 350. This despite SUFA now states that all people with HIV should take ARVs, irrespective of our CD4 count.&nbsp; Fourthly, the viral load test is still very expensive and not available in all hospitals, making it very hard to assess the success of the medication. </p> <p>Pregnant women are a captive audience, since it has become compulsory for all pregnant women to be tested for HIV before receiving any ante-natal care. This violates their human rights. Moreover, coerced sterilisations and intimate partner <a href="http://www.opendemocracy.net/5050/baby-rivona-oldri-mukuan/global-mechanism-regional-solution-ending-forced-sterilisation">violence</a> have been reported. There are also plans to introduce Option B+ in Indonesia, as a part of SUFA, which will mean that all pregnant women, once diagnosed with HIV, will be expected to take ARVs for life - whether they actually need them for themselves yet or not. </p> <p>For women and men alike, adherence counseling is still not working very well. It is hard to commit to taking any medication for life, and HIV is no exception. Current information collected by my organization, <a href="http://www.iac.or.id/">Indonesia AIDS Coalition</a>, through focus group discussions, is finding that many people stop taking ARVs after many years because they are tired of taking them. Over the past few months, more than 10 people we know have died as a consequence. We have also found there are some groups who deny the existence of HIV and AIDS altogether, and refuse to take any ARVs. Community engagement in SUFA is only cosmetic, in that community activists are invited as token participants to government meetings about programmes that have already been determined without prior consultation.&nbsp; </p> <p>SUFA is theoretically a good idea, but if it is only a top-down, with government ambition without rigorous monitoring and evaluation of viral load, or any real understanding of the complex quality of life issues, including side effects, the big goal will not be achieved. Moreover, stigma and discrimination against people with HIV remain high. </p> <p>It is not morally justifiable to diagnose people with HIV and expose them to this environment&nbsp; without any access to care, support or treatment. Even medication alone is not enough without creating a system and environment which can support us to take it, and monitor its effects on our health. Engagement of people with HIV in the whole process, not only as beneficiaries but also as central stakeholders, is critical. </p> <p>I don’t want anyone else to experience what I did. </p> <p>Strategies, no matter how well intentioned, are not enough without the knowledge, insights and experiences of people with HIV to translate them into effective and rights-based practice. I have a big hope that after this International AIDS Conference there will be better treatment and a better quality of life for people living with HIV, especially in the context of the post-2015 agenda. Finding and implementing the right response to AIDS is still a huge issue.</p><p><em>This article is part of 50.50's long running series on <a href="https://www.opendemocracy.net/5050/womens-movement-building/aids-gender-and-human-rights">AIDS Gender and Human Rights</a> exploring the ways in which global policies ignore the gender dimensions of the pandemic, and the impact this has on women's human rights. We are publishing daily during the 2014 World AIDS Conference in Melbourne July 20-25. </em></p><fieldset class="fieldgroup group-sideboxs"><legend>Sideboxes</legend><div class="field field-related-stories"> <div class="field-label">Related stories:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> <a href="/5050/alice-welbourn/aids-2014-conference-stepping-up-pace-and-still-on-wrong-path">AIDS 2014 Conference: stepping up the pace and still on the wrong path </a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/absence-of-evidence-does-not-mean-evidence-of-absence">Absence of evidence does not mean evidence of absence</a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/end-to-aids-not-through-medication-alone">An end to AIDS?: Not through medication alone</a> </div> <div class="field-item even"> <a href="/5050/susan-paxton/positive-and-pregnant-in-asia-how-dare-you">Positive and pregnant in Asia - How dare you</a> </div> <div class="field-item odd"> <a href="/5050/maria-de-bruyn/hiv-what-kind-of-evidence-counts">HIV: what kind of evidence counts ?</a> </div> <div class="field-item even"> <a href="/5050/ida-susser/hiv-fight-for-trade-related-intellectual-property-regulations">HIV: the fight for trade related intellectual property regulations</a> </div> <div class="field-item odd"> <a href="/5050/erica-gollub-ida-susser-zena-stein/right-to-know-women%E2%80%99s-choices-depo-provera-and-hiv">The right to know: women’s choices, Depo-Provera and HIV </a> </div> <div class="field-item even"> <a href="/5050/baby-rivona-oldri-mukuan/global-mechanism-regional-solution-ending-forced-sterilisation">Global mechanism, regional solution: ending forced sterilisation </a> </div> <div class="field-item odd"> <a href="/5050/nell-osborne/against-coerced-sterilisation-resounding-victory-in-namibia">Against coerced sterilisation: a resounding victory in Namibia</a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/hiv-and-global-plan-turning-tide-or-wash-out-for-women">HIV and the Global Plan: turning the tide or a wash-out for women?</a> </div> <div class="field-item odd"> <a href="/5050/jessica-horn/accepted-mishaps-faith-healing-hiv-and-aids-responses">Accepted mishaps? Faith healing, HIV and AIDS responses</a> </div> <div class="field-item even"> <a href="/5050/louise-binder/criminal-law-hiv-and-violence-against-women">Criminal law: HIV and violence against women</a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/is-there-future-for-women-living-with-hiv">Is there a future for women living with HIV? </a> </div> <div class="field-item even"> <a href="/5050/louise-binder/no-test-no-arrest-criminal-laws-to-fuel-another-hiv-epidemic">No test, no arrest: criminal laws to fuel another HIV epidemic</a> </div> <div class="field-item odd"> <a href="/5050/jennifer-gatsi-mallet-aziza-ahmed-mindy-roseman/are-hospitals-safe-for-women-living-with-hiv">Are hospitals safe for women living with HIV?</a> </div> <div class="field-item even"> <a href="/5050/roger-tatoud/funding-struggle-for-hiv-prevention-in-women%E2%80%99s-hands">A funding struggle for an HIV prevention in women’s hands</a> </div> <div class="field-item odd"> <a href="/5050/susan-paxton/aids-2014-where-are-women-we-need-to-step-up-pace">AIDS 2014: Where are the women we need to step up the pace? </a> </div> </div> </div> </fieldset> <div class="field field-country"> <div class="field-label"> Country or region:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> Indonesia </div> </div> </div> 50.50 50.50 Indonesia 50.50 AIDS, Gender and Human Rights 50.50 Editor's Pick women's movements women's health 50.50 newsletter Sindi Putri Fri, 18 Jul 2014 08:03:12 +0000 Sindi Putri 84553 at https://www.opendemocracy.net HIV: Violations or investments in women’s rights? https://www.opendemocracy.net/5050/alice-welbourn/hiv-violations-or-investments-in-women%E2%80%99s-rights <div class="field field-summary"> <div class="field-items"> <div class="field-item odd"> <p>In the context of widespread sexual violence and its reciprocal links to HIV, Alice Welbourn reports on how the formal scientific evidence base alone is beginning to be recognized as not fit-for-purpose to safeguard women’s rights<strong><em>.</em></strong></p> </div> </div> </div> <p>I have just returned from an inspiring conference organised by the Swiss “aidsfocus” consortium in Bern, entitled “Addressing sexual violence and <a href="http://www.aidsfocus.ch/platform/conference/Symposium.2014-02-12.0432">HIV</a>”. These two issues are closely and reciprocally <a href="http://www.unaids.org/en/media/unaids/contentassets/documents/unaidspublication/2014/JC2602_UniteWithWomen_en.pdf">linked</a>, yet to date, most AIDS NGOs have paid limited attention to this fact. The presenters described examples of these links in rural South Africa, where a young woman is more likely to be raped than to learn to <a href="http://www.aidsfocus.ch/platform/conference/Symposium.2014-02-12.0432/AFFileFolder.2014-04-11.5039/File.2014-04-11.1700/get_file/">read</a>; from <a href="http://www.aidsfocus.ch/platform/conference/Symposium.2014-02-12.0432/AFFileFolder.2014-04-11.5039/File.2014-04-11.2643/get_file/">DRC</a> where rape was used as a weapon of <a href="http://survivors-fund.org.uk/what-we-do/local-partners/avega/">war</a>; and from Switzerland where a woman accountant with HIV who survived mass rape in Cote d’Ivoire experienced more <a href="http://www.aidsfocus.ch/platform/conference/Symposium.2014-02-12.0432/AFFileFolder.2014-04-11.5039/File.2014-04-11.0604/get_file/">rape</a> whilst escaping through Libya and Italy now seeks to rebuild her life. </p> <p>Globally the World Health Organization (WHO) states that 1/3 of <a href="http://www.who.int/reproductivehealth/publications/violence/VAW_infographic.pdf?ua=1">women</a> will experience physical or sexual violence by a partner or sexual violence by a non-partner during their lifetime. The European figure is <a href="http://www.who.int/reproductivehealth/publications/violence/VAW_infographic.pdf?ua=1">25%</a>.&nbsp; Women and girls who have experienced intimate partner violence are on average 1.5 more likely to acquire HIV. </p> <p>Those who experience sexual violence are rarely able to protect themselves. They come from all stages and walks of life. <a href="http://salamandertrust.net/index.php/News/Stepping_Stones_Adaptation_for_use_with_Children/">Orphans</a> aged 5 in Tanzania daren’t tell anyone they are being sexually abused for fear of being accused of lying, of being beaten and no longer being loved. Many of them acquire HIV through this sexual abuse. <a href="http://www.unaids.org/en/media/unaids/contentassets/documents/unaidspublication/2014/JC2602_UniteWithWomen_en.pdf">Rape</a> is commonly reported by transgender women and 19% of all transgender women globally have HIV. Young <a href="http://www.independent.co.uk/news/world/africa/crisis-in-south-africa-the-shocking-practice-of-corrective-rape--aimed-at-curing-lesbians-9033224.html">lesbian</a> women in South Africa are raped repeatedly to “cure” them. Young London women who escape <a href="http://www.bashh.org/BASHH/News/BASHH/News/News_Items/Spotting_the_Signs_-_CSE_Proforma.aspx">gang</a> culture say rape is the weapon of choice since it can’t be detected by police in “stop and search”. Sex workers with HIV get beaten by their clients in Senegal for refusing <a href="http://www.unaids.org/en/media/unaids/contentassets/documents/unaidspublication/2014/JC2602_UniteWithWomen_en.pdf">condomless</a> sex. South African women ensure their daughters have hormonal contraceptives to ensure that <em>when</em> they are raped they won’t get pregnant.&nbsp; 42% of women living with men who inject drugs in Georgia have been physically abused by their <a href="http://www.unaids.org/en/media/unaids/contentassets/documents/unaidspublication/2014/JC2602_UniteWithWomen_en.pdf">partners</a>. And many women who are unable to negotiate condom use with their partners, experience daily sexual violence of state-sanctioned “marital” rape. Yet this too is sexual violence, often offering the risk of unwanted pregnancy, STIs and/or HIV - though hardly ever recognised as such. </p> <p>Why is the world so silent about sexual violence, from whatever quarter? Partly because it is so widespread that many take it as the norm, these encounters with violence result in continued fears, violations and resounding silences.&nbsp; This helps to explain why there has also been minimal awareness of the widespread links between sexual violence and HIV described above, beyond the specific horrors of conflicts in <a href="http://survivors-fund.org.uk/what-we-do/local-partners/avega/">Rwanda</a> or DRC. </p> <p>It was hard enough to start to talk publically about having HIV <a href="http://www.opendemocracy.net/5050/alice-welbourn/when-things-fall-apart">myself</a>. It seems even harder to talk about sexual violence. Why is this? Getting attacked, being violated, physically or sexually abused: that fear can stalk every one of us as girls and women throughout our lives. It’s perhaps that constant fear that we might get “<a href="http://www.opendemocracy.net/alexios-arvanitis/politics-of-impotence">blamed</a>” – and blame ourselves - for someone violating us, for “putting ourselves in danger”, that keeps us mute. And while the silence, fear and blame continue, sexual violence will continue to ensure that the threat of rape and/or HIV for women is alive and kicking. </p> <p>Even compulsory HIV tests, especially if they result in violent consequences, are a form of violence. Sexual violence is closely linked to physical and psychological <a href="http://www.aidsfocus.ch/platform/conference/Symposium.2014-02-12.0432/AFFileFolder.2014-04-11.5039/File.2014-04-11.5114/get_file/">violence</a>. All three entail making decisions over what happens to another’s body or mind. Although recent WHO <a href="http://www.who.int/iris/bitstream/10665/85321/1/9789241505727_eng.pdf">Guidelines</a>&nbsp; state in their preamble that all testing for HIV should be voluntary and confidential, this is not explicitly spelt out in the section on testing during pregnancy, when any woman is at her most vulnerable to violence <a href="http://whqlibdoc.who.int/hq/2011/WHO_RHR_11.35_eng.pdf?ua=1">anyway</a>. Instead, in this section, WHO states: “<em>Provider-initiated testing and counselling is recommended for women as a routine component of the package of care in all antenatal, childbirth, postpartum and paediatric care settings</em>.” By contrast, every time medical male circumcision is mentioned throughout the whole document, it is prefixed with the word “voluntary” for emphasis. The absence of this critical word in the section on testing during pregnancy is therefore all the more marked. </p> <p>This lack of the word “voluntary” in this section is a major omission, since there have long been many widespread reports of healthworkers making HIV tests for pregnant&nbsp; women <a href="http://www.dvcn.org/uploads/client_70/files/VAPositiveWBkgrdPaper2011.pdf">compulsory</a> to access ante-natal services. </p> <p>When challenged on this by myself and colleagues, the WHO HIV Department <a href="http://www.bmj.com/content/348/bmj.f7601?tab=responses">emphasised</a> that their Guidelines say testing should always be voluntary and <a href="http://www.bmj.com/content/348/bmj.f7601?tab=responses">confidential</a>. However, one honest senior HIV doctor from Malawi stated in <a href="http://salamandertrust.net/index.php/Projects/GBV_Workshop_Johannesburg_Dec_2012/">2012</a> “<em>we never thought to ask the women if they wanted to be tested or not</em>.” But such glimpses of human rights awareness are however frighteningly rare in the world of HIV. </p> <p>For many women this compulsory test leading to an HIV diagnosis during pregnancy sets off an avalanche of human rights abuse. This diagnosis often starts or exacerbates <a href="http://www.dvcn.org/uploads/client_70/files/VAPositiveWBkgrdPaper2011.pdf">violence</a> for women, not just in <a href="http://www.opendemocracy.net/5050/jennifer-gatsi-mallet-aziza-ahmed-mindy-roseman/are-hospitals-safe-for-women-living-with-hiv">healthcentres</a>,&nbsp; but from <a href="http://www.steppingstonesfeedback.org/resources/25/IPVCOWLHAREPORTFINAL.pdf">partners</a>, from <a href="http://www.opendemocracy.net/5050/alice-welbourn/positive-women-human-rights-defenders">in-laws</a> and from <a href="http://www.opendemocracy.net/5050/heidemarie-f-kremer/usa-banning-people-with-hiv-from-attending-aids-2012-conference">states</a> also.&nbsp; Tales of lack of confidentiality also <a href="http://www.aln.org.za/downloads/Gender%20Violence%20&amp;%20HIV2.pdf">abound</a>. Healthworkers often abuse women with HIV further, once they are diagnosed. A recent study of 750 women with HIV in the Asia-Pacific learnt that 1/3 of them had been encouraged by healthworkers to consider sterilisation and over 10% of them had been told they had no <a href="http://www.unaids.org/en/media/unaids/contentassets/documents/unaidspublication/2014/JC2602_UniteWithWomen_en.pdf">option</a>. This is another violation of these women’s sexual and reproductive rights. There is no other health condition – inheritable or otherwise - than HIV for which sterilisation is so routinely encouraged so widely imposed on women. If men with HIV were being sterilised, there would be outrage, and rightly so. Yet such routine state-sanctioned abuses, where women with HIV are forcibly sterilised, are widely ignored. Moreover, it is now possible, if women receive the right care, support and medication during pregnancy, for children to be born 98% HIV-free, through normal vaginal <a href="https://vimeo.com/80511828">delivery</a>. </p> <p>Why is there so little recognition of sexual and other violence against women in global HIV policies? In part because there is still insufficient formal “evidence base” for its widespread practice in healthcare settings as well as from partners. The formal “medical evidence base” is lagging behind widespread “anecdotal” narratives of&nbsp; abuse. Yet, “<a href="http://www.opendemocracy.net/5050/alice-welbourn/absence-of-evidence-does-not-mean-evidence-of-absence">absence</a> of evidence” of such rights violations still does not mean “evidence of absence.” And in part because we are still facing the global legacy of patriarchal forms of healthcare, where it is still assumed that healthstaff have the right to tell anyone in their “care” what to do. </p> <p>Yet there is a chink of hope. New <a href="http://apps.who.int/iris/bitstream/10665/102539/1/9789241506748_eng.pdf?ua=1">Guidelines</a> from another WHO Department, entitled: “Ensuring human rights in the provision of contraceptive services and information” recognises publically at last the limitations of the current formal research process to address the <a href="http://www.cgdev.org/media/development-drums-episode-32-gender-and-development">complex</a> non-linear, socio-economic and political determinants which shape the lives of most of us: and which most certainly fuel and fan this HIV pandemic for <a href="http://oxfamilibrary.openrepository.com/oxfam/bitstream/10546/115533/1/bk-hiv-and-aids-gender-300907-en.pdf">women</a>. These new Guidelines on contraception state: “<em>Given that the realization of human rights within contraceptive information and services is not a research area that lends itself to randomized controlled trials or comparative observational studies, much of the evidence available for the priority topics could not be readily synthesized using the <a href="http://apps.who.int/iris/bitstream/10665/75146/1/9789241548441_eng.pdf">GRADE</a>&nbsp; approach </em>[which grades the strength of evidence].”&nbsp; </p> <p>Acknowledging these limitations, human rights considerations were nonetheless incorporated into these Guidelines, even into the title. At last we have a breakthrough: a recognition that the formal evidence base alone – which was historically created by male scientists to conduct scientific experiments in laboratories - is not fit-for-purpose to safeguard women’s <a href="http://awid.org/content/download/119960/1362209/file/MnE_ThirteenInsights_women&#039;s%20org_ENG.pdf">rights</a>. Just as human rights lawyer Helena Kennedy has argued that we need a feminist approach to overhaul our patriarchal legal <a href="http://www.helenakennedy.co.uk/work/eve.html">systems</a>, so we also need a feminist approach to overhaul our patriarchal healthcare <a href="http://www.amazon.co.uk/Making-Doctors-Institutional-Apprenticeship-Explorations/dp/1859739555/ref=sr_1_1?s=books&amp;ie=UTF8&amp;qid=1397492978&amp;sr=1-1">systems</a>. Hippocrates understood this over 2,000 years ago when he stated: “<em>It is more important to know what sort of person has a disease than to know what sort of disease a person has</em>”.&nbsp; We all need global policy makers and healthstaff alike to return to grassroots, to listen to and ensure the human rights of those most affected by HIV, to learn from them about how to create workable solutions.&nbsp; </p> <p>Change can happen. A village headman in Malawi, who had acknowledged abusing his wife after an intervention to stop vioence stated: “<em>I stopped the abuse and changed after members of the Coalition of Women living with HIV and AIDS (COWLHA) came to my house and counselled me that what I was doing was violence</em>.” He and his wife now support all their community to overcome <a href="https://vimeo.com/69251113">violence</a> too. </p> <p>Change happened when the Malawi doctor described above honestly declared his ignorance of human rights. And change has happened in the title of the new WHO Contraceptive Guidelines. </p> <p>Change was happening in the Swiss conference, when all those present agreed to ensure that their own NGOs draw up clear guidelines to respond to sexual violence when experienced by staff or the communities they <a href="http://www.aidsfocus.ch/platform/conference/Symposium.2014-02-12.0432/AFFileFolder.2014-04-11.5039/File.2014-04-11.1547/get_file/">serve</a>. </p> <p>And change must now happen across all global HIV policy documents also. </p> <p>Anand <a href="http://asiacatalyst.org/blog/2014/04/world-health-day-a-reflection-by-anand-grover.html">Grover</a>, UN Special Rapporteur for Health, has said: </p> <p>“<em>Are positive people there as tokens or are they effectively making decisions?&nbsp; Are affected persons involved from A to Z?&nbsp; Democratic and inclusive processes are essential to achieving human rights, and are at the core of better governance and better health outcomes</em>.” </p> <p>The UN should listen to its special rapporteur. We need massive <a href="http://www.opendemocracy.net/5050/alice-welbourn/gender-politics-of-funding-women-human-rights-defenders">investment</a> in programmes and policies, shaped and led by principles of women’s rights, which overcome sexual violence and the men’s shame which drives it. This shame is often generated through <a href="http://www.youtube.com/watch?v=oWul3iczMJo">inequality</a>, exclusion, oppression and <a href="http://www.britannica.com/EBchecked/topic/26587/anomie">anomie</a>. We need to make the world a safer, happier place for us all. I trust that sexual violence will one day become as outrageous as the thought of forced sterilisation – or forced vasectomy too, for that matter. </p> <p><em>Read more articles on 50.50's platform <a href="http://www.opendemocracy.net/5050/womens-movement-building/aids-gender-and-human-rights">AIDS, Gender and Human Rights&nbsp;</a></em></p><p><em> In an article next month Alice Welbourn will address whether or not women – or anyone – should be forced to take treatment is another question of rights and bodily autonomy. </em></p> <p>&nbsp;</p> <p>&nbsp;</p> <p>&nbsp;</p><fieldset class="fieldgroup group-sideboxs"><legend>Sideboxes</legend><div class="field field-related-stories"> <div class="field-label">Related stories:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> <a href="/5050/susan-paxton/positive-and-pregnant-in-asia-how-dare-you">Positive and pregnant in Asia - How dare you</a> </div> <div class="field-item even"> <a href="/5050/nell-osborne/against-coerced-sterilisation-resounding-victory-in-namibia">Against coerced sterilisation: a resounding victory in Namibia</a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/positive-women-human-rights-defenders">Positive women human rights defenders</a> </div> <div class="field-item even"> <a href="/5050/anca-nitulescu/exploring-violence-as-consequence-of-hiv">Exploring violence as a consequence of HIV </a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn-louise-binder/compulsion-versus-compassion-hiv-treatment-for-women-and-children">Compulsion versus compassion: HIV treatment for women and children </a> </div> <div class="field-item even"> <a href="/5050/louise-binder/criminal-law-hiv-and-violence-against-women">Criminal law: HIV and violence against women</a> </div> <div class="field-item odd"> <a href="/5050/aziza-ahmed-jennifer-gatsi-mallet/sterilisation-fight-for-bodily-integrity">Sterilisation: the fight for bodily integrity</a> </div> <div class="field-item even"> <a href="/5050/maria-de-bruyn/hiv-what-kind-of-evidence-counts">HIV: what kind of evidence counts ?</a> </div> <div class="field-item odd"> <a href="/5050/ida-susser/microbicide-success-feminism-is-essential-to-good-science">A microbicide success: feminism is essential to good science</a> </div> <div class="field-item even"> <a href="/5050/aziza-ahmed/is-evidence-all-it-will-take">Is evidence all it will take? </a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/absence-of-evidence-does-not-mean-evidence-of-absence">Absence of evidence does not mean evidence of absence</a> </div> <div class="field-item even"> <a href="/5050/ida-susser/hiv-fight-for-trade-related-intellectual-property-regulations">HIV: the fight for trade related intellectual property regulations</a> </div> <div class="field-item odd"> <a href="/5050/jessica-horn/accepted-mishaps-faith-healing-hiv-and-aids-responses">Accepted mishaps? Faith healing, HIV and AIDS responses</a> </div> <div class="field-item even"> <a href="/5050/louise-binder/no-test-no-arrest-criminal-laws-to-fuel-another-hiv-epidemic">No test, no arrest: criminal laws to fuel another HIV epidemic</a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/hiv-free-generation-human-sciences-vs-plumbing">An HIV-free generation: human sciences vs plumbing </a> </div> <div class="field-item even"> <a href="/5050/baby-rivona-oldri-mukuan/global-mechanism-regional-solution-ending-forced-sterilisation">Global mechanism, regional solution: ending forced sterilisation </a> </div> <div class="field-item odd"> <a href="/5050/nada-mustafa-ali/hope-pain-and-patience-hiv-and-sex-workers">Hope, pain and patience: HIV and sex workers</a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/gender-politics-of-funding-women-human-rights-defenders">The gender politics of funding women human rights defenders</a> </div> <div class="field-item odd"> <a href="/5050/parinita-bhattacharjee/sex-work-violence-and-hiv-experience-from-rural-karnataka">Sex work, violence and HIV: experience from rural Karnataka</a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/women-and-post-2015-agenda-are-you-on-board-ark">Women and the post-2015 agenda: are you on board the ark?</a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/end-to-aids-not-through-medication-alone">An end to AIDS?: Not through medication alone</a> </div> </div> </div> </fieldset> 50.50 50.50 50.50 Women's Movement Building 50.50 AIDS, Gender and Human Rights 50.50 Editor's Pick women's human rights women's health patriarchy gender justice gender bodily autonomy 50.50 newsletter Alice Welbourn Tue, 22 Apr 2014 08:07:33 +0000 Alice Welbourn 82043 at https://www.opendemocracy.net An end to AIDS?: Not through medication alone https://www.opendemocracy.net/5050/alice-welbourn/end-to-aids-not-through-medication-alone <div class="field field-summary"> <div class="field-items"> <div class="field-item odd"> <p>In the world of HIV, the allure of the bio-medical techno-fix still attracts many policy makers. Meanwhile a parallel world of care, support, community spirit and women’s resilience still beats quietly. On World AIDS Day Alice Welbourn considers the future of the AIDS pandemic</p> </div> </div> </div> <p>As we mark World AIDS Day once more, I am en route to Tanzania to work with colleagues in <a href="http://pasada.or.tz/">PASADA</a> to support children orphaned by AIDS and their caregivers to build new relationships and resilience in the face of the catastrophe that has left them parentless. In this part of the world, where caregivers are often grandmothers, themselves living with HIV or trying to nurse their partners with HIV, caring for their grandchildren is something that they will, of course do. Yet these carers are also feeling bereft and desperate, at once both grieving for and angry with their adult children who have died on them and left them unsupported in their old age. They daren’t speak the “A” word openly, for fear that they and their children will be further stigmatised by this condition and the multiple secrets and deaths that engulf them all. They often have to take or keep the older girls out of school to help them look after their younger siblings. They have often also experienced the gender-based violence (GBV), which is both a cause and a consequence of HIV for so many women around the world, as I have often <a href="http://stopaids.org.uk/the-dual-epidemic-gender-based-violence-and-hiv/">described</a>. And yet these elderly women caregivers are some of the strongest, most resilient people on the planet and it feels an honour and a privilege to meet and work with them. </p> <p>Some of the most innovative work being done comes from and&nbsp;touches the heart, born out of the profound wisdom of living with this virus and knowing what is needed to support others with it. My colleagues Dominique <a href="http://socialfilms.org/">Chadwick</a> and Nell <a href="http://www.opendemocracy.net/5050/nell-osborne/against-coerced-sterilisation-resounding-victory-in-namibia">Osborne</a> travelled first to Malawi, to meet Annie Banda and Steven Iphani of the Coalition Of Women Living with HIV and AIDS (<a href="http://www.cowlhamw.com/">COWLHA</a>) and their colleagues. They worked with COWLHA members, their husbands and children in one community, trained them in <a href="http://steppingstonesfeedback.org/index.php/page/Resources/gb?resourceid=74">participatory</a> film-making and then filmed their collective <a href="https://vimeo.com/69251113">account</a> of how they have worked together to overcome the gender-based violence which has, until lately, also been endemic in their communities. </p> <p>COWLHA last year conducted a <a href="http://www.steppingstonesfeedback.org/resources/25/IPVCOWLHAREPORTFINAL.pdf">study</a> of GBV amongst its members. This found that they often felt terrified that they would face GBV as soon as their partners and other family members learnt of their having HIV.&nbsp; The report also found that the main consequence of GBV was depression and thus women’s reluctance or inability to take their HIV medication. In many countries this fear of <a href="http://www.gnpplus.net/images/stories/SRHR/2013_Option_B_Report_GNP_and_ICW.pdf">disclosure</a> and its violent consequences has meant that women dump their medication in health centre latrines or enroute home, rather than daring to be found with it. Or they hide it in the bottom of flour bins, or in neighbours’ houses, which makes it hard to take regularly.&nbsp; So overcoming GBV is not just a nice idea – it is a crucial ingredient of enabling HIV medication to do what it is supposed to: ie to keep women healthy, happy and able to work. </p> <p>Using the community-based training programme, <a href="http://www.steppingstonesfeedback.org/resources/25/COWLHAJantoJunenewsletter2013reduced.pdf">Stepping Stones </a>, and related materials, the COWLHA women members, all rural women living with HIV, have supported one another to build new relationships with their husbands. Instead of anger, violence, blame and shame, they have moved to a new space of trust, mutual respect, sharing of income and consensual decision-making. As great-grandmother to be, Bianca Jagger, pointed out in her powerful <a href="http://longfordtrust.org/lecture_details.php?id=17">Longford</a> Lecture on the global gender based violence pandemic last month, “opinions, attitudes and prejudice are learned at home. It is family that first influences a child’s view of the world.” The women in the community in Malawi describe how their children can now laugh and play and grow happily together, now that gender based violence, through their community programme, is almost a thing of the past. The girls in this community can now move around safely, without fear of sexual assault. And, as the women in the film <a href="https://vimeo.com/69251113">describe</a>, their partners are now supporting them to take their HIV medication - and are also getting tested.&nbsp; </p> <p>In England too, inspiring work is afoot, also led by women living with HIV, supporting one another to make a difference. We have also trained women involved in the “From Pregnancy to Baby and Beyond Project” (FPBB), created and led by Angelina <a href="http://www.bhiva.org/RCOG-BHIVA-2012-AngelinaNamiba.aspx">Namiba</a> of Positively UK. The project has trained women living with HIV who are also mothers to make two films of their own about issues they face. It has also made a short documentary of the project. As volunteer peer mentors, they support other women with HIV, some of them newly diagnosed, as they go on their pregnancy journey. 99% of babies born to women with HIV can now be born HIV-free, through normal vaginal <a href="http://bhiva.org/PregnantWomen2012.aspx">delivery</a>. Again, however, women need care, respect and support to enable them to believe that HIV is no longer a death sentence and that, if they take their medication well, there is life beyond an HIV diagnosis. GBV is a big fear – and <a href="http://sophiaforum.net/events/launch-of-report-on-gbv-and-hiv-in-england.html">reality</a> – for many women with HIV in the UK also. Navigating these issues during pregnancy, which is a time of heightened <a href="http://www.who.int/reproductivehealth/publications/violence/rhr_11_35/en/">risk</a> for GBV anyway, requires all the support a woman can find. As Specialist Nurse Midwife Kay Francis of the North Middlesex declares proudly, no baby has been born with HIV in her care since 1999. A proud record indeed. Her passion is shared by the other health staff in the London <strong><a href="https://vimeo.com/80511828">film</a></strong>: doctors Jane Anderson of Homerton Hospital and Alison Wright of the Royal Free, together with Matt Wills of Homerton who provides the social care support. They are all totally committed to high standards of care, respect, support and <a href="http://bhiva.org/documents/Standards-of-care/BHIVAStandardsA4.pdf">quality</a> of life for all those with, or affected by HIV in their care. Working closely with the dedicated Positively UK staff and the FPBB project volunteers as they do, there is so much for other healthcare providers around Britain and across the <a href="http://asia-pacific.undp.org/content/dam/rbap/docs/Research%20&amp;%20Publications/hiv_aids/rbap-hhd-2013-protecting-rights-of-key-hiv-affected-wg-health-care-settings.pdf">world</a> to learn from their example.</p><p>The plan with the film-training and documentary filming in London too is to share information about the work globally, to illustrate once more how funding for love, care, respect and support in the face of calamity can make extraordinary difference to people’s lives. One striking aspect of this filming in England is how few of the women feel safe to speak openly about their own HIV status, despite the inspiring work that they are doing, for fear of censure and rejection by British society. This is in marked contrast to the community spirit which COWLHA has achieved through its work in Malawi. Another curt reminder that labels of “developed/developing world” are curious to say the least.</p><p>On a final note, Lancet Editor, Richard Horton last month, in a commentary entitled <a href="http://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2813%2962334-X/fulltext?_eventId=login&amp;elsca1=ETOC-LANCET&amp;elsca2=email&amp;elsca3=E24A35F">How close are we to an AIDS-free world?</a>, commented upon his disappointment at a colleague writing: “I object to Orwellian news-speak, where the end is not really the end.”&nbsp; I also find this “news-speak” around “getting to zero” hard to stomach, especially when talking to colleagues in rural parts of Africa.&nbsp; To be fair, Horton does acknowledge the need for us to address the “neglect…. of key populations—for example, men who have sex with men, people who inject drugs, sex workers, migrants, and prisoners. The world will never reach low endemicity, let alone become AIDS-free, unless we do more to take these key populations seriously.” The multiple challenges facing these key populations, including criminalization, marginalization and lack of access to medication, do indeed need addressing, and urgently. Yet Horton concludes by still promoting research on vaccines and a cure to HIV as the bright way forward, as if we can still somehow medicate our way out of this pandemic. Sadly, vaccines and cures still haven’t rid us of polio or TB, both of which are, again, on the rise in different parts of the world, owing to <a href="http://www.vaccinestoday.eu/vaccines/polio-eradication-derailed-by-politics/">politics</a> and <a href="http://www.results.org/issues/tb_poverty/">poverty</a> – conditions which breed HIV also. By contrast, the leadership of women with HIV in Tanzania, Malawi, London – and many other points of the compass – has taught me that the way out of the HIV pandemic is not through medication alone but through nurturing respect, care, dignity, support, rights, happiness – and<strong> </strong>safety – for everyone affected by HIV, everywhere. I look forward – still – to the day when these women’s rights initiatives also will be given the credit and recognition they deserve. And they too need proper funding - not just the vaccine and cure initiatives of the "Brave AIDS-free World" </p><p class="BodyA"><strong><em>Read more </em><a href="http://www.opendemocracy.net/5050">50.50</a><em> articles published during </em><a href="http://www.opendemocracy.net/5050/16-days-activism-against-gender-violence-0">16 Days: activism against gender violence</a></strong></p><p>&nbsp;</p><fieldset class="fieldgroup group-sideboxs"><legend>Sideboxes</legend><div class="field field-related-stories"> <div class="field-label">Related stories:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> <a href="/5050/alice-welbourn/absence-of-evidence-does-not-mean-evidence-of-absence">Absence of evidence does not mean evidence of absence</a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/hiv-free-generation-human-sciences-vs-plumbing">An HIV-free generation: human sciences vs plumbing </a> </div> <div class="field-item odd"> <a href="/5050/silvia-petretti/hiv-both-cause-and-consequence-of-violence-against-women">HIV: both the cause and the consequence of violence against women</a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/hiv-and-global-plan-turning-tide-or-wash-out-for-women">HIV and the Global Plan: turning the tide or a wash-out for women?</a> </div> <div class="field-item odd"> <a href="/5050/maria-de-bruyn/hiv-what-kind-of-evidence-counts">HIV: what kind of evidence counts ?</a> </div> <div class="field-item even"> <a href="/blog/email/sylvia-rowley/2009/03/01/hiv-and-womens-rights-in-uganda-why-a-new-law-would-hurt-women">HIV and women&#039;s rights in Uganda: why a new law would hurt women</a> </div> <div class="field-item odd"> <a href="/5050/aziza-ahmed/sterilized-against-our-will">Sterilized: against our will </a> </div> <div class="field-item even"> <a href="/5050/susan-paxton/positive-and-pregnant-in-asia-how-dare-you">Positive and pregnant in Asia - How dare you</a> </div> <div class="field-item odd"> <a href="/5050/anca-nitulescu/romania-living-with-hiv">Romania: living with HIV</a> </div> <div class="field-item even"> <a href="/blog/csw-2009/jamila-taylor/2009/03/16/the-aids-prevention-policy-that-isnt-working-for-women">The AIDS prevention policy that isn&#039;t working for women </a> </div> <div class="field-item odd"> <a href="/5050/erica-gollub-ida-susser-zena-stein/right-to-know-women%E2%80%99s-choices-depo-provera-and-hiv">The right to know: women’s choices, Depo-Provera and HIV </a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/is-there-future-for-women-living-with-hiv">Is there a future for women living with HIV? </a> </div> <div class="field-item odd"> <a href="/5050/ida-susser/microbicide-success-feminism-is-essential-to-good-science">A microbicide success: feminism is essential to good science</a> </div> <div class="field-item even"> <a href="/5050/andrea-von-lieven/hiv-nothing-about-us-without-us">HIV: nothing about us, without us</a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/hiv-of-bombs-and-banks-and-transformation">HIV: of bombs and banks and transformation...</a> </div> <div class="field-item even"> <a href="/od-russia/irina-teplinskaya/hiv-positive-in-russia-where-is-our-medication">HIV positive in Russia: where is our medication?</a> </div> </div> </div> </fieldset> 50.50 50.50 16 Days: activism against gender based violence 50.50 AIDS, Gender and Human Rights 50.50 Editor's Pick 50.50 newsletter women's movements women's human rights women's health gender justice young feminists Alice Welbourn Sun, 01 Dec 2013 09:33:33 +0000 Alice Welbourn 77464 at https://www.opendemocracy.net Compulsion versus compassion: HIV treatment for women and children https://www.opendemocracy.net/5050/alice-welbourn-louise-binder/compulsion-versus-compassion-hiv-treatment-for-women-and-children <div class="field field-summary"> <div class="field-items"> <div class="field-item odd"> <p>Alice Welbourn and Louise Binder consider whether the new World Health Organisation treatment guidelines for women and children living with HIV may result in more abuse and harm </p> </div> </div> </div> <p>New comprehensive <a href="http://www.who.int/mediacentre/news/releases/2013/new_hiv_recommendations_20130630/en/index.html">treatment</a> guidelines for people with HIV have just been launched by WHO at the international HIV pathogenesis <a href="http://www.ias2013.org/Default.aspx?pageId=400">conference</a>, to a mixed response. These include revised treatment guidelines for women with HIV, and also for children with HIV. </p><p>The new treatment guidelines recommend that all children with HIV under 5, regardless of their actual health condition, be given anti-retroviral medication (ARVs). We have <a href="http://www.opendemocracy.net/5050/alice-welbourn/hiv-free-generation-human-sciences-vs-plumbing">written</a> before on opendemocracy 50.50&nbsp; about the challenges of WHO and UNICEF wanting to put all women with HIV on treatment for life (known euphemistically as <a href="http://www.opendemocracy.net/5050/alice-welbourn/hiv-free-generation-human-sciences-vs-plumbing">Option</a> B+) and our concerns about the double-edged sword of “treatment as <a href="http://www.opendemocracy.net/5050/louise-binder/no-test-no-arrest-criminal-laws-to-fuel-another-hiv-epidemic">prevention</a>” for women. Here we outline why blanket treatment for all children with HIV under 5 is of concern to us.</p> <p>Whilst no-one is more anxious to keep children with HIV alive, healthy and happy than their own <a href="http://www.youtube.com/watch?v=8ju2grqLKjM">mothers</a>, there has been extraordinarily little consultation with women living with HIV in this guidelines development process. &nbsp;As anyone with young children knows, trying to get medication into a child can be an exercise in highly skilled negotiation. One would assume it might be useful therefore to consult the experts. Yet none of the key women living with HIV who are well-known women’s rights advocates in Africa, who are our colleagues, when we asked them earlier this year, had heard anything about the proposed guidelines changes. </p> <p>As one of our colleagues, Martha Tholanah, a long-standing activist from Zimbabwe put it recently: </p> <p>“I have been convinced I am missing something in all the debates as they have evolved over the best approaches for HIV-positive women, child-bearing and feeding options. With the advent of so much research and the emphasis on evidence-based approaches, it still seems as if women living with HIV cannot have the benefit of such informed public health approaches. All of a sudden WHO is launching new guidelines which appear not to be backed by evidence.&nbsp; It was not easy getting to where I am today, with a daughter who turned out HIV-negative against all odds. A little over ten years ago, I was faced with a new diagnosis of HIV, and four weeks later, whilst still getting my head around that, I realized that I was pregnant<strong>. </strong>The medical profession at that time did not give me much confidence in the answers I needed in order to assist my decision-making. It seems ten years later, there is no political will to provide women who have to live with the consequences of the guidelines that we get from the experts, with enough information and support. It feels like, as HIV-positive women, we are being force-fed these guidelines. I have not heard of any consultations with the women who have to live with this. We know public health programs will be quick to adopt the guidelines wholesale. There is need to re-consider this action, and listen to the experts in lived realities – the HIV-positive women.”</p> <p>So what are our concerns about this medication? </p> <p>Firstly, adherence. ARVs are for life and you have to take them <a href="http://i-base.info/ttfa/section-3/315-adherence-and-why-it-is-so-important/">religiously</a> not to build up resistance. So starting them has to involve huge commitment by all concerned. A recent powerful film from <a href="https://vimeo.com/69251113">Malawi</a> demonstrates how women with HIV face violence from their partners for even accessing their own ARVs from hospital. How then, given the widespread experiences of violence in <a href="http://www.opendemocracy.net/5050/aziza-ahmed-mindy-roseman-jennifer-gatsi-mallet/are-hospitals-safe-for-women-living-with-hiv">healthcare</a> settings that we know women also<em> </em>experience, do we expect women to risk more violence by seeking treatment for their children also? Furthermore, the liquid ARVs currently available for children need <a href="http://www.kaletra.com/information/default.aspx">refrigerated</a> storage. Yet there is no plan to roll out fridges to women across Africa.&nbsp; It also tastes horrible and children spit it out. If they take too much they may be <a href="http://www.kaletra.com/information/default.aspx">sick</a>. So it is nigh impossible to tell if they are getting the right dose. If not, they will build resistance to the drug. If you develop resistance to ARVs in the UK there are second or third-line <a href="http://i-base.info/guides/changing/what-is-second-line-treatment">alternatives</a> available. These are not widely available in Africa. </p> <p>What about adequate <a href="http://i-base.info/qa/factsheets/a-nutritious-diet">food</a> and water supplies? The guidelines highlight the importance of food in HIV care. Yet there is no parallel plan to scale up food and water security.</p> <p>In the clinics themselves, the guidelines also highlight the importance of actually ensuring medicines keep <a href="http://www.who.int/hiv/pub/guidelines/arv2013/progmanager/box10_4/en/">arriving</a> there. This is also a serious problem since interruption of medications – which is still widespread - also leads to resistance.</p> <p>Most healthcare providers have not been adequately trained how to respect women’s own rights regarding their HIV, so they have minimal ability to support the women to provide these treatments to young children. The staff are also often overworked, often dealing with the secret of HIV in their own <a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2664321/">lives</a> and do not have the time to assist women in a manner that encourages women and their children to continue to attend the clinic for care and treatment.</p> <p>As with other aspects of these new guidelines, the scientific trials to date have also not supported the <a href="http://www.who.int/mediacentre/news/releases/2013/new_hiv_recommendations_20130630/en/index.html">proposed guidelines</a>. &nbsp;There is no strong <a href="http://www.bmj.com/content/346/bmj.f3763">evidence</a> yet that prolonged treatment on antiretrovirals in their formative years does not have an impact on bone and other growth factors in children as they become adolescents. </p> <p>For all these reasons we have asked WHO and UNICEF why they are putting the cart before the horse in launching these guidelines before all these practical issues are addressed first. We have no doubt that they have done so with good intent. However our repeated experiences over the years are that when WHO issues guidelines, country programmes view them as the rulebook, and it’s women who get the blame if they don’t obey them. </p> <p>There are also wider national and global health and societal issues at play here. Why, for instance, is there such a drive for “best <a href="http://www.bmj.com/content/346/bmj.f3763">guesses</a>” over the evidence base? Why is there an ongoing reluctance, nay resistance, to acknowledge <a href="http://www.health.org.uk/public/cms/75/76/313/2590/Complex%20adaptive%20systems.pdf?realName=jIq8CP.pdf">complexity</a>, an inability to embrace the holistic realities of the world we inhabit, to involve as central those people who know most about an issue – i.e. those who are most deeply and personally <a href="http://rhrealitycheck.org/article/2013/06/09/the-pillars-and-possibilities-of-a-global-plan-to-address-hiv-in-women-and-their-children/">affected</a> by it? Why is there a continued rush to produce numbers when we all know that it’s the quality of an intervention which is the key to whether it actually succeeds or not, not the quantity of boxes ticked. To paraphrase Chris <a href="http://www.herts.ac.uk/__data/assets/pdf_file/0009/12501/CMGdman-leaflet2011.pdf">Mowles</a>, institutions might be hitting the target, but often miss the <a href="http://developmentbookshop.com/aidngosandtherealitiesofwomenslives#.UdFfKJV5SEM">point</a>. For instance, we hear from Uganda that women are throwing away their ARVs as soon as they have stepped outside the hospital compound, for fear of reprisals at <a href="http://www.gnpplus.net/en/resources/positive-health-digity-and-prevention/item/142-option-b%20-understanding-perspectives/experiences-of-women-living-with-hiv">home</a>. One boy recently stopped taking his medication because he didn’t want to be spotted by his school friends at the clinic. The clinic staff shouted at him for being so stubborn. So whilst the hospital records show many new uptakes of ARVs, our own sources reveal different narratives. </p> <p>A recent <a href="http://2013.buddhismandmedicine.org/en/">conference</a> in Southern France attended by over 500 healthcare professionals convened to address compassion in healthcare. It was an uplifting and enriching experience as we learnt of the hugely positive impact of approaching healthcare from a positive, collaborative holistic and inclusive approach. As we in the UK learn and grow from the <a href="http://www.ehi.co.uk/insight/analysis/1119/power-to-the-people">Francis</a> report and think about “intelligent <a href="http://www.rcpsych.ac.uk/publications/books/rcpp/9781908020048.aspx">kindness</a>” in healthcare, we hope so much that compassion in UN global HIV care policy and practice might also be an imminent – and immanent - reality.</p> <p><em>Read more articles in openDemocracy 5050's series</em> -&nbsp; <strong><a href="http://www.opendemocracy.net/5050/womens-movement-building/aids-gender-and-human-rights">AIDS, Gender and Human Rights </a></strong></p> <p>&nbsp;</p> <p><em>&nbsp;</em></p> <p>&nbsp;</p> <p>&nbsp;</p><fieldset class="fieldgroup group-sideboxs"><legend>Sideboxes</legend><div class="field field-related-stories"> <div class="field-label">Related stories:&nbsp;</div> <div class="field-items"> <div class="field-item odd"> <a href="/5050/alice-welbourn/hiv-free-generation-human-sciences-vs-plumbing">An HIV-free generation: human sciences vs plumbing </a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/is-there-future-for-women-living-with-hiv">Is there a future for women living with HIV? </a> </div> <div class="field-item odd"> <a href="/5050/silvia-petretti/hiv-both-cause-and-consequence-of-violence-against-women">HIV: both the cause and the consequence of violence against women</a> </div> <div class="field-item even"> <a href="/5050/alice-welbourn/hiv-of-bombs-and-banks-and-transformation">HIV: of bombs and banks and transformation...</a> </div> <div class="field-item odd"> <a href="/5050/alice-welbourn/hiv-and-global-plan-turning-tide-or-wash-out-for-women">HIV and the Global Plan: turning the tide or a wash-out for women?</a> </div> <div class="field-item even"> <a href="/5050/andrea-von-lieven/hiv-nothing-about-us-without-us">HIV: nothing about us, without us</a> </div> <div class="field-item odd"> <a href="/5050/maria-de-bruyn/hiv-what-kind-of-evidence-counts">HIV: what kind of evidence counts ?</a> </div> <div class="field-item even"> <a href="/blog/email/sylvia-rowley/2009/03/01/hiv-and-womens-rights-in-uganda-why-a-new-law-would-hurt-women">HIV and women&#039;s rights in Uganda: why a new law would hurt women</a> </div> <div class="field-item odd"> <a href="/blog/jessica_reed/hiv_and_women_fighting_hypocrisy">HIV and women: fighting hypocrisy</a> </div> </div> </div> </fieldset> 50.50 50.50 50.50 Women's Movement Building 50.50 AIDS, Gender and Human Rights 50.50 Editor's Pick women's human rights women's health feminism 50.50 newsletter Louise Binder Alice Welbourn Mon, 08 Jul 2013 09:36:33 +0000 Alice Welbourn and Louise Binder 73843 at https://www.opendemocracy.net