An Activist's Welcome -- And a Friendly Challenge -- to NYC's New HIV Head
August 7, 2014
HIV activist groups have a history of rocky relations with the city of New York. From its beginning in 1987, ACT UP/NY attacked then-Mayor Ed Koch for his refusal to commit significant resources and political capital to a health crisis that was decimating New York City neighborhoods.
That December, City Council member Miriam Friedlander smuggled a hundred or so ACT UP members onto the steps of City Hall -- then a strict "no demo zone" -- so we could dramatize our demands for HIV funding and services from the city. The following summer, a dozen ACT UP members sat in twice at the office of Health Commissioner Stephen Joseph after he, with the stroke of a pen, cut in half the number of gay men who lived in the five boroughs. The Koch administration put us on trial and we were convicted. ACT UP celebrated its second birthday with a massive demonstration and hundreds of arrests at City Hall. Two years later, the city put another ACT UP affinity group on trial -- this time for handing out clean needles at the dawn of the harm reduction movement. ACT UP won this battle in court, but the war would continue.
In 1995, a core of former ACT UP members formed the AIDS Prevention Action League (APAL). We wanted to do safer sex outreach in the city's sex venues -- bathhouses, X-rated movie theaters, floating parties. Problem was, the city under Mayor Rudy Giuliani was busily closing these venues down, enforcing a state sanitary code that did not recognize any kind of sex as "safer." We were able to convince then-Health Commissioner Peggy Hamburg that our work should be allowed to continue. But the closings, driven by an unholy alliance of modern day Puritans and real estate interests, all but wiped out our partnering venues.
Last year, I returned to ACT UP/NY to work on HIV prevention. One of our first targets: New York City's Department of Health and Mental Hygiene (DOHMH).
At last summer's protest at DOHMH headquarters, ACT UP demanded that the city devote proportional prevention resources to neglected populations at risk, including information and access to prevention drugs (i.e., pre-exposure prophylaxis, or PrEP, and post-exposure prophylaxis, PEP) as well as connection to the ongoing care that could help them maintain their health. To our surprise, our action initiated a useful dialog. Officials at the department invited ACT UP members to take part in developing a PrEP/PEP information campaign for the city. ACT UP and DOHMH officials have continued to meet about revamping HIV testing, improving HIV epidemiology and the possibility of targeting prevention efforts to sexual networks.
Those talks have progressed under the administration of the new mayor, Bill de Blasio, and his new Health Commissioner Mary Bassett (who has a background in HIV work). And now a high-level appointment at DOHMH has given city activists hope that DOHMH is getting serious about countering the epidemic in new HIV infections among men who have sex with men.
For the last several years, Demetre Daskalakis, M.D., has gained renown and respect among the city's activist community. He's the founder and driving force behind the Men's Sexual Health Project. Among other services, the Project brings counseling and testing for HIV and STIs (sexually transmitted infections) to sex parties. Based originally at Bellevue Hospital, the Project recently observed the first anniversary of its transfer to Mount Sinai, the apex of Manhattan's biggest hospital conglomerate. For the past year, Daskalakis has in effect been Mount Sinai's HIV czar as the institution consolidates following a massive merger of many major health institutions. But he won't be in that position much longer.
In July, DOHMH announced that Daskalakis will soon become an assistant health commissioner, heading the Bureau of HIV/AIDS Prevention and Control and overseeing a $200-million budget.
Several news articles since the announcement have heaped praise on Daskalakis. I too welcome into DOHMH a man who succeeded in doing the kind of outreach work in sex spaces that APAL tried a decade before. I particularly admire Daskalakis's willingness to ruffle feathers.
A few weeks before the announcement of his new appointment, Daskalakis spoke at a PrEP seminar for health care providers. During a presentation with PrEP activist Damon Jacobs, Daskalakis said it was time to start identifying a practitioner's refusal to prescribe PrEP when medically indicated as "malpractice." I was so shocked to hear this truth so baldly stated at an official function that I broke into applause, and several of my fellow attendees joined me.
I hope Daskalakis can put this willingness to challenge orthodoxies and natural media savvy to good use in his new position. This is a crucial moment for HIV prevention. HIV infection has been on the rise among gay men and transgender women. Yet there are new prevention resources that could, at least on paper, put an end to the epidemic. We understand better than ever that lowering a community's viral load prevents new infections. We now have the HIV prevention drug Truvada (tenofovir/FTC). New York Governor Andrew Cuomo has recently signed on to a community-initiated effort to end the HIV epidemic by 2020. But despite new tools to counter new infections, in recent years the federal government -- the source of most local funding -- has cut the prevention budget. And recent headlines about a drop in AIDS deaths in the city threaten to sap the cause of urgency.
So, Dr. Demetre Daskalakis, while I join other activists in welcoming your appointment, let me also issue a friendly challenge: Use your position to help DOHMH revamp how New York City conducts HIV testing, an area in which you have been such an innovator. Nothing would be of greater benefit in the fight against HIV.
Let's reorganize HIV testing around peoples' lives. Let every neighborhood at risk have at least one local testing center shaped by cultural norms. Let's figure out quickly who's not coming to these centers and bring testing to the places they go. So many new infections involve the newly infectious. So the city needs to invest in the testing infrastructure that will let it conduct the most sophisticated HIV testing available and conduct the supplementary assays that will catch new infections as soon as possible. For those newly infected, phylogenetic analysis could identify clusters of infections and enable the most effective targeting of prevention resources.
People who get tested have to be linked to care. New York City performs above the national average in identifying HIV infection, treating people who are living with HIV and retaining them in care. The Affordable Care Act and expanded Medicaid should give the city the means to plug continuing leaks in this "HIV cascade of care."
Just as importantly for ending the epidemic, these tools should enable the city to extend care across the sero-divide to New Yorkers at risk, including regular testing for HIV and other STIs and, where appropriate, access to PrEP.
If we do all this, Dr. Daskalakis, we will have made New York City a model for the world.
Jim Eigo has written on theater, dance, art, literature, sex and the design of clinical trials. He helped design two reforms of HIV drug regulation, accelerated approval and expanded access, reforms that facilitated the delivery of many treatments to people across the world. His short fiction has appeared in such volumes as Best American Gay Fiction #3, in such periodicals as The Chicago Review and at such online venues as Cleaver Magazine and Bohemia. His first published art work appears in The Poetics of Space from Intima Press. In 2013, after an absence of 20 years, he returned to ACT UP/NY to work (mostly) on HIV prevention.
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