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How Has Activism Changed Since the Early Years of ACT UP?

April 23, 2012


Nelson Vergel

Nelson Vergel

Founder, Body Positive Wellness Clinic and Program for Wellness Restoration; Houston, Texas

ACT UP was fueled by our desperation to take control of our futures even in dark days of death and turmoil. Without this "in your face" approach, many things that we now take for granted would have never happened or taken years to be achieved. But this desperation is now being replaced by some complacency and the need to lead a normal life.

Now that people are living longer and healthier in the United States, grassroots activism has decreased considerably as people reintegrate into a regular life. Many activists have gone back to school or to work. Some have started families. But some still remain out in the field advocating to eliminate ADAP waiting lists, exposing high drug pricing, working on prevention campaigns and outreach, and engaging researchers and industry in HIV cure research. Activism has moved out of the streets and is now happening within corporate meetings with pharmaceutical companies and the FDA.

I am concerned that treatment activism has not been able to attract younger people in the past 10 years. Some of us, old dinosaurs, are still working on issues that impact drug development and policy, but as we get older it is important to mentor younger people to follow our path and continue the work. The cure is on the horizon but still a long way out.

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Reader Comments:

Comment by: Brad (Washington, DC) Fri., Apr. 27, 2012 at 6:25 pm UTC
I think one of the fundamental changes is that many former activists now work passionately to defend the slow, wasteful bureaucracy of AIDS organizations while working in it. When "activists" say we need to speak with one voice, what I hear them saying is "don't challenge our status quo" despite the arduously slow response to change that bureaucracies by there nature are. Activism has itself become an industry that wants people to be reactive, do their bidding, but not necessarily be informed. When you see how many activists are jetting around the world on someone else's dime to the countless conferences, is it any wonder? There are a few activists out here still, but I know from experience that when you challenge the status quo of "AIDS, Inc." it can feel pretty lonely.

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Comment by: Mitch Mon., Apr. 30, 2012 at 11:50 pm UTC
Ditto. Wish I could've said it this well. Lots of people are whispering this under their breath amongst friends, or anonymously on message boards.

The Activist Set loves to berate newer poz for lacking "fire". The reality couldn't be any further from the truth. We've got plenty of fire-we just don't want to waste it on a system that hocks "preventative facial fillers" and recreational sex pills. We're segregated from one another, or supervised like children in support groups. We're screaming in the wilderness, against a superstructure our "elders" never faced. HIV activism always beckons with one hand and strangles with the other.

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