ACT UP New York's Banner Year in HIV Prevention May Show Us How to Prevent a Plague
December 16, 2013
What Are You Most Proud of When It Comes to PHAG's Work?
I'd say that if I had to choose one issue I am most proud of, it would be PHAG's success in challenging the incorrect perception, including among many in the AIDS establishment, that this epidemic is on the course of being ended if we only keep doing what we are doing. PHAG has raised its voice loudly and clearly, with numbers backing its argument, about the situation of the epidemic among certain sub-populations such as gay men and transgendered women of color.
I am also proud of PHAG's and ACT UP NY's actions toward getting the DOHMH to develop information campaigns on nPEP and PrEP. Although this has still not been achieved, there is significant movement within the NYC DOHMH, unquestionably due to our persistent pressure on the issue.
I am proudest to be a PHAG when a bunch of us show up at some public meeting on HIV policy -- New York City's HIV Planning Group, for example, or the AIDS Institute's "Defining an End to the AIDS Epidemic." Over the course of the meeting several of us speak out. We're united in a few core beliefs -- people living with HIV deserve care and treatment, people at risk for HIV infection deserve to know about the full range of prevention tools available today and to have access to those they choose.
But we all bring to our public declarations our very different personalities, backgrounds, life experiences and viewpoints. It's a thrill to be in these meeting rooms when one of us is speaking out with a passion that is informed by real-world knowledge. You can feel the room is listening intently; we are making our points, we are swaying opinion, we are slowly reshaping how the city and the state will be dealing with HIV prevention. Often at these meetings our comments set the tone, even rewrite the agenda.
What I'm really proud of is the work that we have done raising awareness about PEP and PrEP. People have a right to stay HIV negative, and PEP and PrEP are really important tools in helping that happen. We have a ton more work to do on this issue. The city and state government in New York MUST put funding and systems in place so that people can stay HIV negative. Funding just a few organizations in NYC to provide PEP to the uninsured is not enough to make this accessible to all. Also, throwing condoms CANNOT be the only intervention on the table. We deserve more and the science supports it. So -- ACT UP, Fight Back, Fight AIDS! Fund PEP and PrEP and raise awareness about it NOW!
The Mt. Sinai action was a definite turning point for ACT UP this year; but personally, the New York Public Library (NYPL) demonstration had the most resonance for me. The NYPL demonstration was not an indictment of the NYPL, but a demonstration outside of their exhibition "Why We Fight: Remembering AIDS Activism" to show that AIDS activism is ongoing.
Our point was that AIDS is not history, and by "dying" in front of the exhibit and then again on the steps of the NYPL, while a young, new member made a brief speech about the state of the epidemic today, I felt us as a group connect ACT UP's history with the present reality. It was energizing, enraging, and very beautiful, and as a group participating together, I really felt like we galvanized and connected in the moment.
PHAG and ACT UP have been crucial this year to restarting the conversation about the epidemic and discussing a full spectrum of prevention tools that need to be clearly available to everyone, so everyone can prevent the spread of HIV and be connected to education and care.
About a year after the FDA approved Truvada as PrEP, we launched a grassroots HIV prevention initiative with our "Fuck Smarter Toolkit," advocating that people in high-risk groups (men who have sex with men --particularly men of color, trans men, and trans women) educate themselves on the different degrees of risk reduction available: consistent condom use, treatment-as-prevention (TasP), PrEP, and PEP. We obviously don't have the same resources as the New York City Department of Health and Mental Hygiene, but since NYC DOHMH is doing almost nothing about the unconscionable budget cuts handed down from the state and from the feds, and the simultaneous 12 percent increase in new infections in MSM the past few years, we picketed at their doorstep and we went to their meetings and started to make some noise. We asked why they keep sitting on their hands about negligent snafus with PEP and PrEP in our city's hospitals, clinics, and doctors' offices, and why they accept cuts without moving money from the city budget. We demanded they get an aggressive public information plan in action, and the wheels on that are slowly, very slowly, moving. Small, local community groups and nonprofits are the ones who are really starting to get the word out about PrEP and PEP, and we ally ourselves with them.
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