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An HIV-free generation: human sciences vs plumbing

The top down medical bio-fix behind the new Global Plan for an AIDS-free generation will not work without shifting the status quo to include human rights and the science of phenomenology: that means talking to us, funding us and involving us, says Alice Welbourn

Home two weeks from the AIDS 2012 conference, I reflect on what to answer when friends ask how it went. “Hmm, mixed”, I reply. “Oh really?” they query – “it had a lot of coverage in the press here, an ‘AIDS-free generation’ and all that.” My heart sinks. The next question they ask is "what actually gets presented at these conferences?” Well one poster highlighted the on-going huge gulf between academics and large research institutions in the main conference and the Global Village – the free part of the conference, where the Women’s Networking Zone also resides. Once more, this year’s WNZ’s packed agenda felt like this was where the real conference took place, in terms of women’s rights issues. Yet one major funder only fulfilled its new year promise to fund the furnishing of the space in mid-July, just minutes before the order deadline: such is the knife-edge of funding the gender agenda. And on our last morning, one female UN colleague at our hotel asked us where our offices are located. We laughed and replied truthfully: “our kitchen tables”...

The Community Dialogue Space was also in the Global Village, a vast subterranean other-world – both literally and metaphorically, with open access to all who may care – or dare - to wander off the street into the bowels of the convention centre. This is where, for me, the most telling public meeting of the conference took place later that day.

At the meeting, two Red Ribbon Award winners, both  women with HIV, spoke alongside a UNICEF representative, on a panel convened by Naisiadet Mason of Kenya and facilitated by Thembi Nkambule from Swaziland. Princy Mangelika from Sri Lanka and Serdida Tumushabe from Uganda each spoke in turn of the extreme stigma experienced by women in their groups, from health centres and communities alike. The peer support work such women have done together to overcome this, building on their internal resilience to restore hope for themselves and their families, is widely replicated yet rarely celebrated – and even less rarely funded – around the world.

The next panelist, Chief of HIV at UNICEF then spoke of the “Elimination Plan” (as he described it) and its roll-out, assuring us of the UN’s on-going consultation with women with HIV en route. This is the much-heralded grand plan to create an “AIDS-free Generation” (referred to aptly by Stephen Lewis as that “Pavlovian chorus”), to “Eliminate New HIV Infections Among Children by 2015 and Keeping Their Mothers Alive.” Yet when asked from the floor why women with HIV globally are so chronically under-funded as to be unable adequately to engage in the process; when challenged as to why it was acceptable that the original Plan and subsequent national plans have eliminated the words “voluntary” and “confidential” from their contents; and when confronted with the fact that in Kenya women with HIV are being told by health staff that they have to be sterilized in order to access treatment for themselves and free infant formula for their babies, he barely stirred.

The UNICEF representative went on to claim that the best thing for all pregnant “mothers”, if they test positive for HIV, is now to go straight onto life-long treatment (known as “Option B+” – a plan developed by US company McKinsey (“the Trusted Advisor to the World’s Leading Businesses, Governments and Institutions”)). The head of McKinsey describes his company as plumbers, involved in distribution and supply chains. Why fund organizations of women living with HIV, who also have lived experience of poverty, fear and violence, when you can fund McKinsey instead? The UNICEF representative explained that the reason why “Option B+” is now the best way forward for all “mothers” is because there are not enough CD4 counting machines to go round.  The significance of this is that scientists have made it clear that people with HIV do not need to start treatment until our CD4 count drops below 350. Yet if there aren’t enough CD4 machines to go round, McKinsey and the UN maintain that it will be easier just to put all “mothers” on treatment, irrespective of our CD4 count.

Poster of woman, child and health worker with text 'Know your CD4 count - get early treatment' South African commnuity health poster

Anti-retroviral medication is strong chemotherapy. Starting treatment is hard enough, as anyone with cancer can tell you. Adhering to it – for life remember - is a challenging psychological, as well as logistical process. Yet here – and in the main conference, as UNICEF paediatrician Chewe Luo elaborated - we were being told the reasons why all pregnant women should now do this. As women, taking treatment, we can save: a) our babies; b) ourselves and c) our possibly HIV-negative husbands. In that order. Proponents would argue that this is only an option and that women will have a choice about whether to start treatment straightaway or not. However, history has shown us that choice is not one of the words that springs to mind when it comes to women’s access to healthcare.

We hear that this plan, to put all people on treatment straight away, is to be rolled out to everyone shortly under forthcoming WHO “new science” guidelines, turning the excitement of “treatment as prevention” into another potential mantle of oppression that was starting to haunt those of us with HIV at the conference. Yet WHO should also think twice: the application of “new science” is not automatically good science, as over-prescription of antibiotics makes clear – and it certainly shouldn’t be about economics. Such plans are led by a deep-rooted assumption that medication will solve all ills. Yet if this goes wrong, there will be a backlash of unprecedented proportions, with drug-resistance developing and people fearing to test for even longer than they already do.

Yet there are alternatives to this Global Plan and “treatment as prevention” rationale, which were not on the table for discussion that day. Firstly, researchers at Imperial College have now developed a new CD4 counter, about to be available, costing under $10 per test, which can be used straight after the HIV test. This compares to a minimum of $100 per year for each individual’s medication. Even I, hater of economic rationales as I am, can’t help but be struck by the thought that $10 could save a government, already struggling with stock-outs, $90 a year. And this economic argument is quite apart from the research which considers how women might feel about starting on treatment before they need to.

Secondly, what about good food and enough of it? Huge numbers of the world’s poorest families affected by HIV are also facing chronic food insecurity. Women, as primary food growers and preparers are especially affected by this. Yet as the late great nutritionist and HIV activist Lynde Frances, Director of the Centre in Harare, knew well, feeding up those most ill on good, nutritious, local pulses and sadsa for two months boosted their immune systems, making their CD4 count shoot up: effectively delaying their need to start the scarce ARVs.

So how come the Global Plan advocates are rushing - once more - to the quick techno-bio-medi-fix of “Option Plan B+”, rather than really consulting with women? Because it’s a numbers game, based on targets. The more women you can get on life-long treatment, the more you can reach the 90% HIV-free babies global target and the 50% HIV-related maternal mortality reduction target. It’s only about “keeping their mothers alive”, after all – not about the quality of our lives – about whether we might be happy, healthy, safeor whether, without our agency, such targets are sustainable.

What is missing here is what Andrea Cornwall has so eloquently explained: in terms of sustainability and women’s rights, we need to step back and learn important lessons about women’s real empowerment, from slavery and colonialism. Continuing to fund a few showcase interventions, no matter how high quality, eye-catching, media savvy and business-driven they may be, is still just like the Dutch boy in the legend, plugging the hole in the dam with his thumb. That Dutch boy was no fool. He knew his action alone wasn’t going to turn the tide. This Global Plan, for all its heartfelt intent, is not going to shift the status quo of how women – especially those of us with HIV - are fundamentally, chronically and consistently short-changed on investment, rights and our equal place in society.

It is really hard to summarise all the issues at stake here – and that is the key point. HIV is not just a health issue and never has been – so just trying to utilize a business model to introduce a top-down medical bio-fix will never work. We need to draw on multiple scientific disciplines here.

Photo of room covered with health posters with two people sitting at a table. A Kenyan health centre

Medical sciences are there for sure. These include the need to ensure that health centres are trained to be havens of safety and respect for all women and girls, irrespective of our condition; that health staff are sufficiently paid and supported, not to take out their feelings of being undervalued on their clients. There is then the need to ensure that all women with HIV have access to a wide range of safe contraceptives, including the female condom, and including post-rape care, to avoid unwanted pregnancies in the first place; and that we have access to safe, legal abortion if we want it. Then for pregnant women, there is the need to ensure that the medical roll-out of the Global Plan in each country is monitored by independently funded women with HIV, who know all the pros and cons of the issues.

Next, in terms of treatment for life irrespective of CD4 count: there is a need to ensure that the well-documented psychological factors, as well as the logistical issues facing this huge step are adequately addressed by health carers. This too needs careful monitoring, if we are not to risk HIV going the way of superbugs and multi-drug resistant strains of TB – and women being blamed for “failing to adhere”.

Human rights and legal sciences are also critical: we need to ensure that no woman anywhere will fear coerced sterilization or criminalization if she has HIV, and to eradicate the bad laws and practices which undermine and jeopardize our health and safety.

Social, psychological and spiritual sciences are also key. All women need to have the surety of informed consent regarding whether, when, with whom and how to have sex; all of us need to be certain of safety and respect in our communities: at all times, whether living with HIV or not. We may then, in turn, feel better equipped to offer safety and love to our own children as they grow up and to the many other dependents in our care, owing to this pandemic.

Economic and political sciences provide a further strand. Although ethical considerations should always hold sway over economic issues, how come the UN are not investing in the new cheap CD4 counters and widespread food sovereignty across African communities, for long-term sustainable change, rather than medicating women, for short-term epidemiological targets? Heaven forbid that there are other stakes at play here.

All of these elements, working together for a change, will win through: not just one alone. Last but by no means least, there is also the science of phenomenology – of our own lived experiences. Just fund us, talk to us, involve us – and we can tell you what we need and desire, to make the world a safer, more just – and more socially integrated place – for us all. Let’s just pray that Hillary Clinton, as she plans to reform the whole response to AIDS by World AIDS Day, is listening.

Post Script: As for the Global Fund, all the senior gender expertise has left, in West Africa, wide-spread Fund-related stock-outs are being reported – and the Fund has just appointed an economist who used to run an electricity company’s accounts, as its new Chief Financial Officer. Watch this space: sparks might fly.

 

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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