AIDS 2014 Conference: stepping up the pace and still on the wrong path
As the 20th International AIDS Conference 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.
Alice Welbourn 18 July 2014
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.
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Source: openDemocracy
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