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ACT UP New York's Banner Year in HIV Prevention May Show Us How to Prevent a Plague

December 16, 2013

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Why Did You Decide to Join ACT UP PHAG?

Luis Santiago

Luis Santiago

I was part of ACT UP in the 1990s, in the Latino Caucus and the Treatment and Data Committee. Two events made me rejoin ACT UP NY in early August this year. One was the information on the rising number of HIV infections among young gay men and transgender women, particularly among those of color. The second was watching the ACT UP NY contingent at this year's LGBT Pride Parade. I realized then that there was a reenergized ACT UP NY, and I wanted to be part of it and contribute to addressing the worsening epidemic among the young.

My commitment was further solidified when I attended the first meetings in late summer. I watched a combination of young and mature activists seriously working together with great passion and energy. An action proposed by PHAG was approved, targeting the New York City Department of Health and Mental Hygiene (NYC DOHMH) and providing a list of demands for their immediate action. This October 15 action at the DOHMH building in Queens was the first HIV/AIDS-related activist action I participated in in years. I decided right then and there that PHAG was the right place for me to be, to help address one of the issues I feel strongly about: prevention of HIV infection among the younger generations.

Jim Eigo

Jim Eigo

In January 2013 I went to my first ACT UP NY meeting in 20 years. The CDC had just released figures showing a sharp spike in new HIV infections among gay guys and transgender women. I wanted to get involved in prevention work, and ACT UP was the place I had once worked for safe and effective HIV treatment. And now, nearly a year after my return to AIDS work, I am proud and grateful that ACT UP NY has attracted a core of about 20 smart, articulate and passionate activists of different ages, sexes, orientations, ethnic backgrounds and serostatuses, to work on its Prevention of HIV Action Group, PHAG.

A major campaign of PHAG has been to target deficiencies in HIV prevention at New York City's DOHMH. Through a combination of street actions, meetings with DOHMH officials and bringing our case to a wider audience by speaking out at public meetings and writing articles and blogs, we've changed the public conversation surrounding HIV prevention and helped shift DOHMH priorities and policy.

There are two kinds of prevention drugs now available -- PEP for an emergency exposure and PrEP for everyday risk -- but few community members are aware of them. ACT UP was the first to call for information campaigns about PEP and PrEP, and the DOHMH is now working on a PEP/PrEP campaign, with input from community members, including ACT UP members. ACT UP has insisted that HIV testing has to target New Yorkers most at risk for HIV, and that future DOHMH contracts for testing services respond to this demand. After ACT UP pressure, DOHMH has accelerated the switch at city clinics to a new generation of HIV test that can catch infections earlier and help close the window in which most new HIV infection occurs. And after ACT UP pointed out several flaws in the department's HIV epidemiology, DOHMH has begun to take steps to improve it, so the city can map the epidemic better among all its sub-populations and know where to target resources.

Jennifer Avril

Jennifer Avril

My first PHAG meeting -- before we were PHAG -- was with four other ACT UP members in a diner back in May where we hashed out the basics of the Fuck Smarter campaign in preparation for Pride. I took notes all along the margins of a flyer I'd gotten that night and we kept refining and refining the ideas until they went from general grievances and solutions to honed points that felt actionable, like anyone could be handed the material and say, OK, I'm empowered to prevent infection now.

I don't know exactly how to put it, but I fell a little in love that night, with the work, and with what we were just starting to become. PHAG is 15 or 20 strong now and focused on definitive areas of prevention including testing, stigma and PEP and PrEP.

Copyright © 2013 Remedy Health Media, LLC. All rights reserved.
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This article was provided by TheBody.


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