The Living 2012 Positive Living Institute is the first pre-conferences of the International AIDS Conference. For those outside of HIV/AIDS, the International AIDS Conference is comparable to the San Diego Comic-Con – a cacophony organized around a single cause. The Living 2012 Positive Living Institute is a bare-bones event for people living with HIV/AIDS to meet across boundaries to network, respond to emerging issues of the epidemic, and to advance the voice for those most impacted by the disease. Perhaps apropos, the meeting took place surrounded by AIDS Quilt panels – a common reference point for most speakers.
​It started 40 minutes late with a far less than the 310 registered participants. People felt free enough to wear a variety of clothes – from shorts to suits; quite unlike any other meeting happening in DC right now. The crowd was fairly diverse across men, women, racial and ethnic backgrounds. There was a remarkable lack of transgendered participation, especially since this event occurs in the Northeast Corridor of the US – where a number of cities have quite visible transgendered communities. As someone who has been involved in domestic HIV since 1990, I knew very few people, usually a good sign at an HIV conference.
​The meeting is being video broadcast to satellite meetings in Calcutta and Kiev – whose participants are mostly commercial sex workers and drug users, and therefore unable to attend a meeting in the US. Today’s technology allows a bridge between these meetings, as the meetings will have a response broadcast back to us in the hopes of building a dialogue. In the morning, we are encouraged by the participants in Kiev and Calcutta to remember the issues of those who are forgotten and often legislated against in HIV/AIDS initiatives.
​Laurel Sprague, a doctoral student in the US and a women openly living with HIV/AIDS, spoke on the importance of human rights even when those human rights are not legislated. She began the discussion from the personal view – where she was when she was diagnosed and the isolation she experienced from family and the social support structures she had relied on her whole life. She then discussed how discrimination and stigma operate at a structural level – how the larger society devalues us, and how clinical care settings can be a primary place where stigma is experienced (partially perhaps due to the fact that they know our HIV-status). In addition, she discussed how difficult it is to discuss criminalization or discriminatory laws and policies because people do not understand if those laws are even present or what they might be. She also pointed out how pervasive the move has been internationally to dismantle confidentiality policies in order to better “target” people living with HIV.
​The Living 2012 Positive Living Institute is important at this stage of the epidemic, as compelling science has emerged to support biomedical treatments such as viral suppression, pre-exposure prophylaxis and male circumcision. What is the role of people living with HIV in theses discussions? Are we simply a vehicle to accept treatment and maintain these regimens? Is this a realistic and achievable goal? How about other issues central to the HIV epidemic – such as lack of access to drugs across the world, the persistence of HIV criminalization laws (which, by all indicators, are just bad public health and even poorer human rights), and the social inequities that fuel the epidemic across the world?
​As people living with HIV, we are painfully aware of the dissonance – and distance – between big speeches and plans, and how these are operationalized. Because we go to the clinics, some of us take the medication, and all of us feel the brunt of these policies and practices.
Written by Dr. Andy Spieldenner @aspield