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TheBody.com/TheBodyPRO.com cover the XIX International AIDS Conference (AIDS 2012)
  
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Who Is the International AIDS Conference For?

July 26, 2012

Who Is the International AIDS Conference For?

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 don’t. 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."

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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. We’re coming out of the basement!"



  
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This article was provided by Housing Works. It is a part of the publication Housing Works AIDS Issues Update. Visit Housing Works' website to find out more about their activities, publications and services.
 
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AIDS 2012 News & Features on TheBody.com

Reader Comments:

Comment by: Vickie Lynn (Tampa) Tue., Jul. 31, 2012 at 4:15 pm EDT
The pharmaceutical companies paid dearly to have their booths where they did. Most scientists and researchers do include the HIV community when designing and caring out their research. We are alive because of their commitment to improving our lives. We must not lose sight - they are on our side. The International AIDS Conference is a Scientific Conference and always has been.

Perhaps we should create a conference for people living with HIV, by people living with HIV.

Not judging just saying.
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Please note: Knowledge about HIV changes rapidly. Note the date of this summary's publication, and before treating patients or employing any therapies described in these materials, verify all information independently. If you are a patient, please consult a doctor or other medical professional before acting on any of the information presented in this summary. For a complete listing of our most recent conference coverage, click here.


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