July 26, 2012
This week marks the first time that the International AIDS Conference has been hosted in the United States in the last 22 years. But despite the progress in the fight to end AIDS, there is still a strongly defined wall between those with access and those that dont. In the context of information about treatment, education and HIV resources for actual HIV-positive people, the conference itself appears to play a part in the great access divide.
The problem lies within the disproportional amount of academic, research based sessions, vs. sessions featuring advocates, healthcare workers, service providers -- and most importantly -- sessions including (and for) actual individuals living with HIV/AIDS. Many of the sessions were formatted to present new studies about treatment barriers, or infection rates, rather than encouraging dialogues about strategies to overcome challenges to care.
Sarah McLean, Special Initiatives and Volunteer Coordinator, participated in the conference as part of a clinical group of Housing Works delegates, consisting of staff members and clients. "I feel like there was a lot of quantitative data, and not a lot of qualitative conclusions drawn from that data. I would like to see more strategic information. That would be really helpful for organizations like ours."
According to the observations of some conference delegates, the session presenters mostly assumed their audiences were experts in the areas of academia, research, and politics, and were clearly not presenting to an audience of actual HIV affected or infected people. There were but a few sessions that offered innovative community based models of care, or strategies to overcome barriers.
Long time Housing Works client and HIV activist, Glenn Richardson stated, "I would want to see new program designs, new ways to address how society is aging with HIV, or any solutions on what difficulties we have with our medications. There was very little interest put into solving problems."
Matt Cartwright, Clinical Social Worker at the West Village Health Center opined about the conference, "It appears to me that this is a big business. Everyone has their booths. No one here is really teaching skills ... I would like to see more sessions for people living with HIV, about how to improve your self esteem, and see them addressing it from a human standpoint, rather than a clinical standpoint."
It all begs the question of who is the International AIDS Conference really for? Is it for pharmaceutical companies to market their new drugs? Is it a place for researchers to present their new papers? Is it a place for medical professionals to network? The answer may include space for all of the above, but NOT without the most integral part of the entire HIV movement, who are the people living with the virus, as well as those who are providing programs at the grassroots community development level. Those folks are the pulse of the movement, without whom, the conference would not exist.
The exclusion was felt by many of delegates and members of the HIV community, who were led by Housing Works activists in a series of actions this morning, under the slogan of "Nothing about us, without us," a demand for the science field and policy makers to not only include people living with the virus in the discussion, but to position them at the core of all decision making processes. Protesters brought light to the fact that the only inclusive space for the (non badge holding) community at large was down in the basement, contrasted with the pharmaceutical brands who were hosted in a super security lined exhibition space on the top level. Protesters later changed their slogan to "Nothing about us, without us. Were coming out of the basement!"