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HIV Summit

Summer 2002

A note from TheBody.com: Since this article was written, the HIV pandemic has changed, as has our understanding of HIV/AIDS and its treatment. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!

This was the third year I attended the Summit on HIV sponsored by GlaxoSmithKline. We go there, we listen to presenters, we see our colleagues that we don't see all year, and we represent our communities.

I have to say that I've left each summit with a feeling of emptiness and a sense that there is no community. There's no singular vision that all can agree upon, no shared vision. This is contrary to feelings in the early years when we all knew what we wanted. We knew what to advocate for. We knew who our enemies were. We knew that we were sick and there was nothing to treat us. We knew we were dying and we knew we desperately needed a cure for AIDS. This agenda has fallen by the wayside as activists have died off, and the new advocates continue to sit at the table with pharmaceutical companies, politicians, and Republicans. While local task forces advocating for the HIV-positive incarcerated negotiate with the cops, which would be fine if they actually advocated for the prisoners instead of agreeing with the cops. I don't understand the new activism. What are we gaining?

I've suggested to a couple of people over the past three years that the community should take the Summit as an opportunity to define its issues and priorities. From there we could create an action agenda that we can all agree upon and move our issues forward. Perhaps even make some progress in obtaining our original goal of a "cure."

I found many responses to be quite baffling to me. One person said, "good idea, if you organize a meeting, I'll attend." Other people said various things like: "We'll just fight." "Oh, we won't be able to agree on anything." "Why? I want to go shopping in my spare time." And perhaps the most interesting comment to me was: "Do you mean Glaxo should schedule a community consensus-building meeting into the agenda?"

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Well, actually NO, that's not what I mean. What I mean is that the community has a responsibility to our constituents and that we should take it upon ourselves to hold a meeting and prioritize issues identified by our members and clients living with HIV disease and AIDS. Then we should bring these issues to the table. Bring them to the forefront of the summit. Let people in powerful positions who are able to make change know what changes are needed.

Either way, whether the community takes the lead or Glaxo schedules consensus building meetings without the presence of corporate representatives -- this work needs to be done. But instead of getting this work done, the overriding issues in past years seemed to be: "I got to take a trip." Which in any other group could be construed as corruption, not activism.


We Agree

This trip actually did yield some consensus and common vision among participants. It happened more by circumstance than activist planning. However, I believe that most people in attendance agreed on two key issues.

  1. Redesigning existing compounds into "once-a-day" dosing is important, however the more important issue is to find new compounds that actually work to stop and/or kill the virus. Something that doesn't cause death from heart attacks, lactic acidosis, vision impairment, mitochondrial toxicity, etc. If companies are going to spend billions of dollars redesigning old drugs into once-daily dosing -- we won't live any longer than we do on twice-a-day dosing.

  2. We need Highly Individualized Therapy -- H.I.T., instead of HAART. Instead of blanketly dosing everyone on the same stuff and at the same dosage, what we really need in order to address gender differences, sex differences, racial and ethnic differences is individualized treatment for that person's individual virus. How many times have we heard "The virus is different in everyone"? Why then, is everyone's virus treated as if it were the same? It appeared that we all agreed. YEAH! something that we can all agree upon. That's what made the Summit a success for me.


A note from TheBody.com: Since this article was written, the HIV pandemic has changed, as has our understanding of HIV/AIDS and its treatment. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!



  
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This article was provided by Women Alive. It is a part of the publication Women Alive Newsletter.
 
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