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

By Mathew Rodriguez

December 16, 2013

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

If you know anything about AIDS activism, then you know that the AIDS Coalition to Unleash Power (ACT UP) was among the first groups on the frontlines making sure that the lives of people living with and dying from AIDS-related illnesses, and the health of those at risk for HIV, were cared for and paid attention to. Now, more than 25 years after their genesis in 1987, after they've taught us how to survive a plague, and after the death of one of their highest-profile early members, Spencer Cox, the New York chapter has reemerged with a new agenda: prevention.

Let's get it right: ACT UP has never gone away. The group, which has many chapters in other cities around the world, has always been a part of the conversation when it comes to HIV/AIDS. However, with recent CDC statistics indicating that the HIV/AIDS epidemic in the U.S. is still highly disproportionately affecting gay men, especially young gay men of color, ACT UP New York (ACT UP NY) has responded with the formation of the Prevention of HIV Action Group (PHAG). A few members of PHAG spoke with us about this notable year for the group.


Table of Contents


Copyright © 2013 Remedy Health Media, LLC. All rights reserved.

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.

What Are You Most Proud of When It Comes to PHAG's Work?

Luis Santiago

Luis Santiago

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.


Jim Eigo

Jim Eigo

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.


Silence = Death

"Lynn Sherman"

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!


Jennifer Avril

Jennifer Avril

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.


Terence Roethlein

Terence Roethlein

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.


Copyright © 2013 Remedy Health Media, LLC. All rights reserved.

What Is Happening With PHAG in the Near Future?

Luis Santiago

Luis Santiago

In the near future, I think it is urgent that PHAG and ACT UP NY force the New York State Department of Health to provide guidelines to clinicians on the use of PrEP. It is unacceptable that one and a half years after the FDA approved Truvada for PrEP, we still lack concrete directions from the top health institution of New York State. In the scenario we face now, with an urgent need in all our communities to know of, and be able to access, all proven prevention tools, from condoms to PrEP to getting tested regularly, the lack of these guidelines is being used as an excuse by physicians, who are excessively cautious, to refrain from prescribing PrEP to folks who could benefit from it.


Jim Eigo

Jim Eigo

At meetings like the ones I described earlier, several of us have forged friendships and working partnerships with an even more diverse array of New Yorkers engaged in the fight against HIV. I hope we can build on those relationships to help re-ignite a grassroots HIV movement.

Several community-based organizations, including ACT UP NY, are asking Governor Cuomo and Mayor-elect Bill de Blasio to join us in pledging to work to put an end to the AIDS epidemic in New York by 2020. But unless the communities most affected by HIV demand that our elected officials truly focus our health care bureaucracies on HIV, fund all essential HIV services and give the affected communities a voice in what gets done and how, this initiative will remain a slogan.

I hope New Yorkers rise to the moment. I hope New Yorkers take the tools we now have -- a new understanding of how the epidemic moves in a community, new HIV testing, new prevention drugs, new ways to extend health care -- so we can treat more and more New Yorkers living with HIV and see fewer and fewer new HIV infections. If we let this opportunity pass and do nothing, the date of the end of the long and immeasurably costly AIDS epidemic will recede still further into a darker future.


Terence Roethlein

Terence Roethlein

We received some TV coverage and some Internet stories around PrEP and PEP, but it's not enough. Both the government and the manufacturer of Truvada-as-PrEP (Gilead) are afraid to touch this controversial hot potato, so we are doing it. We are asking New Yorkers to think seriously about how they plan to reduce their HIV risk and then do something about it. Half of MSM do not use condoms and even if they do, are they using them effectively? If they know they won't use condoms, are they taking PrEP daily? If they don't know their serostatus, will they get tested and treated if need be? There is no leadership asking these difficult questions because they assume AIDS is pretty much over, even though minority groups are still hardest hit. In my opinion, we've come way too far in the fight against AIDS and the fight for queer rights to sit back and be satisfied with just marriage. Marriage is fine, but it doesn't cure HIV.

Mathew Rodriguez is the editorial project manager for TheBody.com and TheBodyPRO.com.

Follow Mathew on Twitter: @mathewrodriguez.


Copyright © 2013 Remedy Health Media, LLC. All rights reserved.




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