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Future for women living with HIV?

July 30th 2012





Rumours of the closure of the Global Coalition on Women and AIDS, and a World Bank and USAID meeting of “world thought leaders” with no women on the panel. On the final day of the XIX International AIDS Conference, Alice Welbourn reports on the battle for the human rights of women with HIV to health, participation in the world, and to dignity.

At the XIX International AIDS Conference in Washington this week the firstplenary session in memory with a majority female panel took place…. and there have been an awful lot of plenaries over the years.

The activist, Linda Scruggs, made a presentation that was especially welcome because of the behind-the-scenes negotiations that were needed to put a woman living openly with HIV on the plenary list.  Yes, even though this is the 19th international AIDS conference, and even though over half of the world’s people with HIV are now female, a fight was needed to have a woman openly living with HIV in a plenary session.

Scruggs is an amazing storyteller and a warm and generous advocate to boot. Her presentation was electrifying and justifies that fight. But the battle to get a woman with HIV into a plenary wasn’t the only one we, as women, feel is going on during the conference this year.

We came to the conference with the news that the future of the GlobalCoalition on Women and AIDS is in question. We learnt at the conference that the Senior Gender Officer at the Global Fund had left the post the week previously.

We learnt at the conference that there was to be a major meeting of “world thought leaders” to discuss the HIV pandemic, hosted by the World Bank and USAID, with a – sic – all-male panel.

It is hard enough work trying to prepare for a conference of this magnitude, with all the months of fund-raising for flights, accommodation and meals, deadlines for publications, leaflets and posters to print, sessions to design, power points to present, panelists to chase as a co-chair. All this, quite apart from the anxiety levels about actually getting into the country as a person living openly with HIV. All of my colleagues freely admitted that we were totally exhausted before we left home. Yet to come here only to find that we also have to address all of these issues on top of all that feels a bit like the last straw.

The Global Coalition is a unique combination of civil society organizations and UN agencies. It was founded back in 2004, when it was becoming increasingly obvious to the UN that the effect of the pandemic on women and girls was growing alarmingly rapidly and that we were no longer “just” care-givers and grievers, but also people who were ourselves acquiring HIV.  This was something which had already been evident to those of us women living with HIV for some time. But at last others were waking up to this reality also. It is hard for the two entities of civil society and the UN to work together and of course there is always room for improvement in any organization – especially one which is trying to build bridges between different constituencies. Over the years the Global Coalition has offered inroads into connecting with the UN system for civil society members: and, perhaps more importantly, it has also offered members of the UN some greater insight into the lived realities of women living with HIV. Landmark documents produced through this partnership include the report , entitled “In Women’s Words”, of a virtual consultation which connected the voices of 800 women from over 90 countries into the High Level Meeting on AIDS in June 2011. It also completed last year an evaluation of the Global Fund from the perspective of women’s rights. It has provided funding for successive Women’s Networking Zones at the International AIDS Conferences, including ViennaRome and now DC; it has funded a Young Women’s Initiative, bringing new young women leaders to the African AIDS Conference in Ethiopia last December; and now to DC. These include such impressive young leaders as Annah Sango, another wonderful woman, who spoke so powerfully in the opening session here on Sunday.  And now there are rumours of its closure, as something no longer needed, in this age of austerity.

News from The Global Fund also has caused us huge concern, with the departure of its Senior Gender Officer, with no prospect for a replacement. We learn also of plans for the Global Fund to focus much more on “evidence-based” programmes, despite our knowing how very hard it is to create anevidence-base related to gender issues, which is acceptable to policy makers. The Global Fund has been literally a life-saver for millions of people who are now on treatment worldwide. As the dynamic Olive Edwards of the Jamaican Community of Women living with HIV stated yesterday: “I am alive because of the Global Fund Grant to Jamaica. The cost of ARVs had made me lose all savings ..several of the women in our support groups faced (a) similar situation…even children’s education suffer during that time because we were getting sick (some died) and could not work to support our children. Today we are healthy, redefining how we live – our children have even completed college education and income generation to improve life and other personal…” Yet now we even hear rumours that the Global Fund might consider putting a cap on further treatment funding. What is the world coming to?

As I rushed late out of the Washington Convention Center yesterday, from a press conference promoting the female condom and its paper doll campaign, I realized that I had missed the women’s arm of the march that I had wanted to join. So instead I walked through the oppressive heat of Washington, with the massed crowds of red umbrellas held by sex workers from across the US who are defiantly here, supporting their many colleagues across the world who can’t be here because of the US ban on sex workers. I linked up for a while with the arm of the march promoting the science of harm reduction and an end to the war on drugs. I shared the sidewalk for a while with many marchers wearing the universal pink triangle of the gay rights movement. And new to the march this year, I occupied the street leading up to the finishing square with the many Robin Hoods of the Financial Transfer Tax movement, with their colourful red jackets and green berets.  In all of these sections of the march, there were, of course, many women also.  And finally, when we reached the march homebase, just a stone’s throw from the White House, I finally found the women whom I had originally intended to march with, waving their scarves of turquoise, blue and aqua, to represent the huge waves that women continue to make in the AIDS response.

On reflection, I was glad to have missed connecting initially with my branch of the march, because it reminded me once more of the common humanity of us all in our efforts to build a new world where HIV is consigned to the history books. It reminded me of the immense resilience and courage of civil society around the world in the face of oppression, power and exploitation. And it also reminded me that each and every branch of this pandemic includes, touches and is supported by women. We have this week also been filming short 60 second videos here of women living with HIV from all around the world, entitled “I have a dream…..”, in homage to Martin Luther King and the enormous legacy of his speech, made 50 years ago next year in this historic city of human rights marches.

I think my dream may be as follows: “I have a dream that one day we women will no longer need to remind the powers that be in the world – that we exist. That in my lifetime all women and girls, including those of us who are living with HIV, are recognised as having the same human right to health, to participation in the world and to dignity as men and boys.  That in my lifetime we will no longer have to strive to remind the world that without us it would collapse. I have a dream that one day, soon, all this – which is just a basic human right – will no longer be a dream, but a reality.”

This article is part of a major series that openDemocracy 50.50 is publishing on  AIDS Gender and Human Rights  during the AIDS 2012 conference in Washington DC, July 22-27

Originally Published by Open Democracy

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