At the International AIDS Conference in Vienna today I stood beneath a pair of underwear that belonged to a display of bras and “knickers” demarcating the border of the Women’s Networking Zone in the Global Village. Women had arrived at the AIDS Conference apparently wearing black, red, stripes, and polka dots.
And people noticed. In his remarks at the Opening Plenary of the conference, Michel Sidibé, Director of the Joint Programme on HIV/AIDS, spoke explicitly about the need to address women’s issues in our response to the epidemic, with particular reference to gender based violence. Paula Akugizibwe of the AIDS and Rights Alliance of Southern Africa reminded us that positive women avoid life-saving prevention of mother to child transmission (PMTCT) services because of egregious human rights violations in the context of delivering PMTCT care, including forced and coerced sterilization of HIV positive women. Julio Montaner acknowledged amongst the shouting of sex worker rights activists that sex work should be decriminalized.
Central to all of this is the idea that trust is important to making the health system function effectively. We cannot simply assume that health care providers can stigmatize, discriminate, and trample on the specific health needs of people who seek HIV related services – including women who seek sexual and reproductive health services in the context of HIV – and then expect people to return to a system where they were mistreated. To most this would be common sense, but the mainstream public health response has often bolstered the notion that we should be more concerned with outcomes than we are with people – a false and troubling dichotomy.
Mandatory testing represents one of the greatest “victories” of this false dichotomy. Over the last 10 years we have seen an erosion of the right to consent to be tested for HIV, and this has had a grave impact for women who are often tested, against their will, while giving birth. For some this moment represents an “opportunity” to intervene and potentially save a life (I use the singular here intentionally as with this type of health response we often are not concerned about the well being of the mother, only that of the child) despite the fact that positive women have long decried this basic violation of bodily integrity and the fear and distrust that it has created amongst positive women. For women’s rights activists, mandatory testing becomes a gateway for other violations stemming from a woman’s positive status, from mistreatment to sterilization. Once respect for individuals has been systematically eroded in the public health arena, it is difficult to get it back. Even harder to win back is the trust of individuals, a truth learned with the Tuskeegee Syphilis Experiment when the U.S. government used Black men and their families as research subjects without their consent, a lesson that is being re-learned today with positive women.
The centrality of human rights in the “public health” response to an epidemic that has largely marginalized the individual, especially the already marginalized individual be that a woman, a sex worker, a man who has sex with other men (MSM), a transgender individual, or a drug user (or some combination of these categories) was seen as key to addressing the HIV epidemic in last night’s Opening Plenary. Perhaps we are moving towards a culture of respect and of trust in health care settings and in turn becoming more effective in our response to the HIV epidemic. Amongst the celebration and cheers it was nice to feel hopeful, even if just for a night.