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No experts, saviours or victims: women living with HIV

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.

If there was one key message 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 homeless, 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. 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 30 million people - have lost their lives to AIDS-related illnesses.

AIDS memorial quilt. Credit. Alice Welbourn.

In 2014, 36.9 million people were estimated to be living with HIV globally.  At the end of 2012 it was estimated that 52% of adults with HIV globally were women and globally, AIDS-related illness is the leading cause of death amongst women of reproductive age.

The lesson from the tsunami isn’t new. Professor of International Health Michael Alpers who has contributed significantly to the eradication of kuru 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 work amongst the Fore, the community where kuru was widespread.  But the lesson is still missing from the world of global HIV policy.

In the light of a huge lack of recognition or systematic collection of local knowledge, ATHENA Network, AVAC, and Salamander Trust with UN Women, 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 findings of which are presented this week at the International AIDS pathogenesis conference taking place now in Vancouver.

This global review 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.

Two specific strategies are being promoted by UNAIDS and others. ‘Fast-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.

The other new strategy comes from the recent START 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 Association.

Both these initiatives may look fine in principle, but how do they match up to women’s lived experiences? As I explained last December, 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 results are still only dealing with small numbers 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 risks 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 violence.  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.

In light of many “anecdotal” reports from women with HIV that show that predominantly bio-medical strategies fail women – and in which women then get blamed 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.

For example, although there has been a huge focus on pregnancy 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  heteronormative norms.

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 and so we set out to develop a more holistic 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.

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 that outside researchers have asked for many years, which would elicit limited answers.

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.

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:

“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.’”

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 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.

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 the experts.”

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 access to health and resources of women with HIV. These structural factors must be addressed in a human rights-based approach to policy, programmatic and budgetary responses and interventions that consider the visions, needs and rights of women living with HIV. 

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.

With thanks to our consortium colleagues involved in this research, to GRG members and to all the women who took part, and to UNWomen.

Read more articles on the long running 50.50 platform AIDS, Gender and Human Rights

About the author

Alice Welbourn is Founding Director of the Salamander Trust and is on the steering group of the Athena Network. Diagnosed with HIV in 1992, she is a former chair of the International Community of Women living with HIV and developed the Stepping Stones training programme on gender, HIV, communication and relationship skills. Alice is a Commissiong Editor for the openDemocracy 50.50 platform AIDS, Gender and Human Rights.

Alice Welbourn es socia fundadora de Salamander Trust y forma parte del grupo de dirección de Athena Network. Fue diagnosticada de VIH en 1992, y fue la presidenta de la Comunidad Internacional de Mujeres con VIH y desarrollo el programa de entrenamiento Stepping Stones sobre género, VIH, y técnicas de comunicación y relaciones. Alice es encargada de la de la Edición de las plataformas sobre Enfermedades de transmisión sexual, género y derechos humanos de openDemocracy.


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