Scientists, politicians, policy-makers, academics, doctors, celebrities – and those few activists who can afford it – are gathering for the 20th World AIDS Conference which opens in Melbourne this weekend. Meeting to discuss the global pandemic, it is already apparent that the theme and objectives offer nothing new in the global response to AIDS, other than to scale up what is already known to work - for some.
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 don’t - whether they actually need it already for themselves or not; and for governments to introduce criminalisation 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 HIV.
In 2010 and 2012 the conference straplines were Rights Here, Right Now and Turning the Tide Together. This year’s strapline is Stepping up the Pace. The conference website promises us that this “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.” However, DFID, which takes the UK government lead in international AIDS work, 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 Vienna in 2010, and many leading activist colleagues around the world, such as Silvia Petretti and Martha Tholanah, cannot attend this year due to lack of funds. It feels as if this Melbourne strapline might more aptly have been “Slowing Down the Pace".
In 2010 openDemocracy 50.50 launched the AIDS, Gender and Human Rights 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.
The different gendered perspectives from which authors have addressed the pandemic on 50.50 are diverse, ranging from the use of condoms to criminalisation, from funding to fear, from immigration to indigenous rights, from reproduction to religion, from sterilisation to sexual pleasure, from “anecdote” to evidence 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.
The HIV Vaccines and Microbicides Resource Tracking Working Group has released a report today revealing a 4% drop ( US$1.26 billion ) in funding for HIV prevention research and development in 2013. 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.
These issues are interconnected, touching as they do on the rich array of the shared human 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.
Take intimate partner violence. It was only back in 2010 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, “absence of evidence does not mean evidence of absence”. Yet it is only now that another crucial piece of the 'evidence' jigsaw is starting to emerge: namely that women with HIV also often experience intimate partner violence, and violence in health-care settings, as a result of their diagnosis. 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 policies 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 - of gender-based violence since diagnosis.
Whilst intimate partner violence experienced by women before diagnosis is now starting to be on policy-makers’ radar, there will still be scant discussion in Melbourne of its existence as a consequence of diagnosis, except for the sessions presented by the few women living with HIV who have a platform in the main conference. These will be supplemented by sessions in the Women’s Networking Zone free space of the Global Village, where activists focus their under-funded efforts, and where it has been said that the real conference takes place.
Another issue we have raised in our series of articles 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 need 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. It fails to recognise that women can already go on safer short-term treatment during pregnancy, to protect future babies from HIV, with normal delivery and 99% HIV-free babies.
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 difference 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 Village with key UN officials next week and will report on how this goes. They will also be addressed in the Women’s Networking Zone.
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 Institute last year, entitled Preventing Overdiagnosis, calling for a revision of the over-use of various medical procedures and treatments to ensure that treatment is free from harm and truly necessary. The second conference, which will be held in Oxford this September, with a line-up of prominent medical names, is being backed by the British Medical Journal's Too Much Medicine campaign. One recent example of these concerns, highlighted by the UK Chief Medical Officer, is about over-use and misuse of antibiotics, which is likely to lead to drug-resistant microbial strains soon developing. These dialogues augment my concerns regarding over-medication of HIV.Similarly, a recent article in the BMJ by Dr Trish Greenhalgh and colleagues has flagged up the limitations of the 'evidence-based' medicine model when applied in a mechanistic, one-size fits all way. 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 writing on HIV and AIDS, herald a glimpse of change. But this broader picture debate is very unlikely to be aired at the conference.
The book Adventures in Aidland, edited by anthropologist David Mosse and a recent refreshing book by former DFID senior social development adviser Rosalind Eyben, 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 Paul Gilbert 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.
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.
The AIDS 2014 Conference starts on 20 July. The title of its declaration is “Nobody Left Behind.” It took quite a tussle to get the fourth paragraph, which mentions women’s rights 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 our agendas to raise at this conference, because they are still not being addressed in global policies.
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 adult numbers of people living with HIV.
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.
This article is part of 50.50's long running series on AIDS Gender and Human Rights 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.