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The diary of an AIDS activist: lost to temper and hungry for hope

“The real reason we haven’t beaten this epidemic boils down to one simple fact: we value some lives more than others”  -  Charlize Theron, speaking at the 21st International AIDS Conference in Durban.

"Condomising" in the Global Village, International AIDS Conference, Durban: Photo: Alice Welbourn

On the final day of this year’s International AIDS Conference in Durban I got mad in public. It was in yet another panel about women with no woman actually living openly with this HIV virus on the platform. I normally take pride in having a small reputation for keeping my relative calm when all around me are losing theirs. But my outburst from the audience last Friday, especially when the panelists talked about women’s leadership, the need to link with the women’s movement and the idea of addressing huge rates of HIV among young women in sub-Saharan Africa with PrEP, was about the absence of a woman living openly with HIV on the panel, the mad lack of funds for women’s rights activists to take part at all and the huge need to hold on to bodily integrity when it comes to treatment, This outburst offered me a large and overdue dent in this particular aspect of my ego. It is really hard, I find, being an activist and not getting angry. Anger seems to be part of an activist’s job description. Anger comes from the reptile part of our brains, the most ancient, instinctive part in the lower back of our skulls, which we share with the rest of the animal kingdom. It is borne out of deep fear, frustration and despair. Yet it does not represent us humans at our best and erupts most often at the wrong time with the wrong person.  So I have had to keep learning, the hard way, that anger doesn’t get you very far, Most of the time, I manage to keep it quietly under wraps, ticking away dormant, well covered up by the more humane folds of my upper brain. But every now and then it lashes out in a charged moment of fierce compassion. Last Friday was one of those moments. This article is both an apology to those who, through no ill-intent of their own, got caught in the firing line of my lashing reptile tongue, and a rage against the machine that charges up these furies inside us. 

The carpark meeting room under the main conference building. Photo Alice Welbourn.

The week didn’t start well. I arrived early, for the “Living”, 2-day Pre-Conference which, although it was great to see old friends and colleagues, took place mainly in ‘breakout rooms’ which had been temporarily created out of the underground concrete carpark dungeon beneath the Durban conference centre. With loudly whirring ventilation shafts running across the ceiling above us and cold strips of white neon light to guide us, we truly felt hunkered down with a bunker mentality, as we considered where we had come from and where we are heading next with this pandemic. With new adult HIV acquisition still very worrying globally and with widespread cuts to AIDS budgets, the mood was bleak. So this environment sadly set my mood for the week. A feeling of restlessness and anxiety, fuelled by other subsequent events.

Funding inequities was a key theme for many over the week. Of course, I was lucky to be there at all. There are many colleagues from around the world who could not remotely find the huge funds to attend. The conference is made up of many different layers of the AIDS industry. There are those from government or big pharma, the UN, for profit companies and big international NGOs, who stay right next door in the Hilton, or other large hotels nearby, and often ask me if I am staying there too. I wasn’t. There are exhausted scholarship holders who sleep 20 km away, shipped in and out on shuttle buses. Some lucky few get these scholarships; others manage to get registration waived by being volunteers or programme rapporteurs, or as media reps, like me. Some young women got shipped halfway around the world to appear at pre-meetings and then had no pass or support to attend the conference proper or even the other pre-conference meetings. There are some, like Martha Tholanah, a widely respected global AIDS activist, former chair of the International Community of Women living with HIV, an openDemocracy contributor, Chair of the Gay and Lesbian Society in Zimbabwe, winner of the 2014 David Kato Award, and this time awarded the Elizabeth Taylor Award by the International AIDS Society and AmfAR, during the opening plenary session. Yet even Martha, for all her extraordinary contributions to human rights, and even though she was requested by major international agencies to appear on three different panels in the main conference during the week, had to commit firstly to her services as a rapporteur in order to attend the conference at all.  This. Must. Change.

Bodily autonomy, or lack of it, is another key issue that constantly disturbed me. Bodily autonomy is enshrined in human rights. The thalidomide catastrophe of the 1960s warned us of the high stakes involved in putting medication into people’s bodies when it hasn’t been properly tested. Obstetricians have very clear guidelines around medication, as a result of this disaster. They and others regularly emphasise that all medication should be used as little as possible for as briefly as possible. Meanwhile, WHO has now released its latest treatment guidelines, called “treat all” for short, which promotes immediate life-long treatment for all who test positive for HIV. As WHO’s Director of the HIV Department, at the closing of the Living Conference explained, the new guidelines were based on a global consultation of 206 people living with or working on HIV. He did say that both testing and treatment are offered, not mandatory. But this particular piece of information appears on pages 72 and 73 of this document so does not jump out at the reader. Whilst I continue to believe in the critical importance of treatment, when we want and need it, the issues facing people who take cannot be ignored. More on this further down.

"Whatwomenwant" twitter campaign banner in the Women's Networking Zone, Global Village: Photo: Alice Welbourn

A third theme which struck me was the ongoing paucity of women living with HIV in the main conference sessions. I was involved in presenting three sets of data which have been developed by women living with HIV ourselves, and which clearly indicate that many women living with HIV have major issues with accessing treatment. First, we unveiled new collaborative research findings in Durban from our “Welcome to our House” survey, commissioned by WHO’s Department of Reproductive Health and Research. We reported, on just one of many hundreds of posters in the main conference, the side effects from treatment experienced by women living with HIV, based on a global sample of 434 women. Of the 88% of these who were on treatment, only 11.9% reported no side effects. These included fatigue, mood changes, headaches, changes of body shape, loss of libido or sexual desire and others. These physical challenges are difficult to deal with in and of themselves: they also impact on women’s sexual health, our ability to work and feel financially secure, our autonomy and dignity, and mental health. They can even make women more vulnerable to gender-based violence.

Presenting the UNWomen treatment access review in the Women's Networking Zone, Global Village. Photo: Alice Welbourn

Secondly, in the Women’s Networking Zone in the informal Global Village, we presented our collaborative research with UN Women, ATHENA Network and AVAC on the first ever global treatment access of women living with HIV. This revealed how many barriers women face, even from health workers’ attitudes and practices when trying just to access care. This multi-stage review included discussions with well over 200 women. As Martha Tholanah remarked “am I lost to follow up or bullied out of care?”, after a health worker rebuked Martha when she commented that it can be hard to keep taking medication daily for years.

Makena Henguva of Namibia Women's Health Network presenting participatory films in the Women's Networking Zone, Global Village (c) Alice Welbourn

Our third data set was a series of participatory films created by women living with HIV who are members of Mama’s Club in Uganda and the Namibia Women’s Health Network, also presented in the informal Global Village. As one young Ugandan woman described: “I just decided to find a razor blade and cut my own cord” when she gave birth on a maternity ward before the Mama’s Club was started. In the Ugandan films, the women describe the crazy situation whereby the health service expects each woman to have a treatment “buddy” to accompany her (normally expected to be her husband) when she goes to access treatment, who then has to be tested for HIV himself: but if her husband refuses to go with her, she then has to find a motorcycle ‘boda boda’ taxi driver to accompany her instead, and pretend to be her husband. The Namibia films reveal the awfulness of coerced sterilization which has happened to so many women living with HIV across sub-Saharan Africa, Asia, the Pacific, Latin America and beyond, as a consequence of their HIV status. All these films are a huge testament to the courage, resilience, activism and sheer grit of the women who have regrouped to form strong grassroots peer-led support networks, which help each woman who turns to them; and these in turn often become trained to help other, more newly diagnosed women.

None of these three presentations - and many on similar women’s rights themes from other colleagues in Durban, made it into the large session rooms where the formal sessions took place. Meanwhile, those sessions in the main conference which did address women and girls were, once again, largely conspicuous by the absence of a woman - or young woman - actually living with HIV on the panel.

By contrast in the main conference, the main agenda included a focus on WHO’s “treat allcampaign, and on the threat of HIV drug resistance, both of which we have commented on before. Whilst UNAIDS asserts that 17 million people with HIV are now on treatment, there are huge challenges, as our research shows clearly, between starting and staying on medication. This is what can easily lead to HIV drug resistance. And amongst those I spoke with last week, many question whether this 17 million figure represents people actually staying on treatment, because of the huge personal barriers described above. That is why we see our research as so relevant.

The “solidaritree” in the Global Village. Photo: Alice Welbourn

So once again we have witnessed a big gulf between the rhetoric of much of the main conference and the reality of our own lived experiences. Once again, the latter are represented far better in the informal global village activities, yet barely noticeable in the main conference. Once again, our right to represent and speak out for ourselves on panels and our rights to uphold our bodily integrity in relation to treatment and care are overlooked in the main conference arena. Ironic as it seems, one person who spoke truth to power in the main conference was South African Hollywood star, Charlize Theron, in the opening ceremony, when she stated:

"The real reason we haven’t beaten this epidemic boils down to one simple fact: we value some lives more than others. We value men more than women, straight love more than gay love, white skin more than black skin, the rich more than the poor, and adults more than adolescents…… we single out the vulnerable, the oppressed or the abused."

She wasn’t saying anything new that women living with HIV and others in civil society haven’t said before her. But she was listened to for a change. For a few rare moments, the voices and views of all of us activists were actually being articulated in the main conference. I nominate Charlize to organize our next conference. Perhaps then we will start to see the global political shake up that is really needed to respond effectively to this pandemic once and for all. Perhaps then I will be able to hold my temper in check.

With thanks to Luisa Orza for contributing to this article.

 Read more articles in our dialogue: 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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