ACT UP/NY demands Department of Health accountability at the epicenter of the U.S. epidemic and commits to reinvigorate the national prevention agenda
By Jim Eigo and James Krellenstein, ACT UP/NY
The authors, James Krellenstein (left) and Jim Eigo, at an August 15 demonstration at the New York City Department of Health and Mental Hygiene, where ACT UP/NY and allies protested recent funding cuts to the City’s postexposure prophylaxis (PEP) program, a lack of awareness campaigns and availability of HIV-prevention drugs PEP and preexposure prophylaxis (PrEP), and faulty, misleading data—all factors contributing to what ACT UP deems the “second wave” of HIV/AIDS. Photo credit: Ben Shepard.
Before Hillary Clinton stepped down as secretary of state, she presided over the official November 29, 2012, release of a Blueprint for an AIDS-Free Generation. With a trumpeter on the inside front cover, the 64-page document declared that the world was about to enter the third and final phase of the war against HIV infection. After AIDS as a full-scale plague, and AIDS as a manageable disease, we now had within our sites the elimination of symptomatic HIV. Twenty days later, however, another arm of the U.S. government released another document. Some news it contained struck a discordant note with Secretary Clinton’s battle cry. After reading it, many wondered if we hadn’t somehow traveled back to the dark early years of the epidemic.
An HIV Prevention Emergency
According to U.S. Centers for Disease Control and Prevention (CDC) incidence estimates released on December 19, men who have sex with men (MSM; a category that includes transgender women), comprising less than two percent of the population, accounted for 66 percent of the 47,600 new HIV infections in 2010. Between 2008 and 2010, new infections rose 12 percent for all MSM and 22 percent for young MSM. Some subpopulations were at substantially higher risk: an African American man who had sex with men was six times likelier to acquire HIV infection than his white counterpart.
Spurred by news of the sharp upward trend of new infections, a core of grassroots activists of differing ages, sexes, orientations, colors, and serostatus began working on prevention issues for ACT UP/NY—they include the authors. Though the CDC numbers told of a prevention emergency, few in New York’s gay communities—from the rank-and-file to the top echelons of Gay, Inc.—seemed to realize what was going on. HIV was something that the community had taken care of back around 1997, wasn’t it? Effective antiretroviral therapy (ART) has made HIV manageable for most who have access to the drugs. For many younger men, AIDS was a disease—and a political cause—of the 1980s. Yet the successful treatment of HIV requires that strong drugs be taken over a lifetime. And those most likely to become infected—young, queer, and of color—are among the least likely to receive care, or even to know they’re infected.
HIV prevention—avoiding infection in the first place—is still the surest way to fight AIDS. Yet gay men’s perceptions and personal practice of HIV prevention are wildly inconsistent. Studies find that gay men use condoms—still the most effective way to prevent the sexual transmission of HIV—less than half the time they practice anal sex;,, a recent study cites this as the major factor in the rise of new HIV infections among MSM. Without the support of the HIV prevention establishment or official safer-sex guidelines, gay men have long practiced risk-reduction techniques like serosorting (positives have anal sex with positives; negatives with negatives) and seropositioning (only negative guys top), but often erratically and with mixed results.,,, Moreover, well-regarded studies led by Beryl Koblin, PhD, and Nancy Padian, PhD, have found no evidence to support the efficacy of behavior-based prevention efforts—mostly variations on the early epidemic’s condom-based safer-sex workshops., So in recent years the AIDS world has turned toward pharmaceutical prevention.
The most important pharmaceutical prevention has been treatment as prevention (TasP). When treated with ART, people living with HIV can achieve and sustain an undetectable viral load—and are unlikely to pass on the virus. Yet 15 years after the introduction of effective ART, only a quarter of U.S. residents living with HIV have achieved sustained undetectability. Clearly, treating individuals who have HIV infection helps them and the community. But in the real world, many thousands of HIV infections will occur before treatment alone puts an end to HIV transmission.
Some prevention drugs target people who are HIV-negative but at risk. Postexposure prophyalaxis (PEP), a 28-day course of antiretroviral drugs, can prevent HIV infection after a potential exposure to the virus. It has long been available to health care workers after potential exposure to HIV on the job. In2005, the CDC released guidelines for nonoccupational PEP—potential exposures where a condom malfunctions or hasn’t been used, or from sharing a needle. Eight years later, ACT UP found that few members of the community know what PEP is. Preexposure prophylaxis (PrEP), a daily dose of antiretroviral drugs, can prevent HIV infection in people at risk for repeated exposure to the virus, most often due to condomless sex. More than a year after the U.S. Food and Drug Administration (FDA) approved Truvada (a fixed-dose, two-drug combination) for PrEP, ACT UP found that few members of the community know what PrEP is.
This is the prevention landscape ACT UP found in spring 2013. We had to convince queer communities of an HIV prevention emergency. Our first fact sheets warned, “More than 1 in 2 young gay men will be HIV-positive before they are 50—unless we act now.” Community health care providers were telling us that younger patients had a fuzzy understanding of the specifics of sexual risk. ACT UP’s FCK SMRTR, a smarter sex toolkit produced for New York’s annual gay pride march, provided basic information on the range of prevention tools and strategies available in 2013. It asked gay men to consider their level of risk (“Sucking dick has very low risk”) and to realize that some popular prevention strategies are only sometimes effective (“Knowing your partner’s HIV status only reduces risk if you REALLY know it”). In sex education workshops and community forums that ACT UP has planned for the fall, we hope to extend prevention into a wider discussion about community health and pleasure and reengage the spirit of self-empowerment that infused the first generation of safer sex.
People make sex decisions within a political context. New York’s Mayor Michael Bloomberg has put his personal stamp on campaigns against guns, cigarettes, and big soft drinks. But HIV prevention has been neglected for years. The city spends little of its own money on prevention—1.2% of its proposed overall disease prevention budget for 2014. When the CDC cuts prevention funding to the city, the city cuts programs. In what has become a yearly ritual, New York City’s Department of Health and Mental Hygiene (DOHMH) tries to reduce or eliminate prevention grants to local AIDS groups by as much as 50 percent, and the city council fights to restore them., With the money it spends, the city has favored uninspired condom distribution programs and dated workshops not markedly different from those that have failed before.
The DOHMH has not directed prevention funding toward people at highest risk. In the last year for which there are figures, 2009, only five percent of the city’s nonclinical HIV tests targeted MSM—who constitute more than half of the new HIV cases in the city. The DOHMH has officially pronounced that 14 percent of the city’s HIV-positive MSM are unaware of their serostatus. But this figure comes from two months of testing the blood of everyone who passed through a single emergency room in the Bronx—without any way of knowing which were MSM. At the same time, the DOHMH has conducted the local component of the 2011 National HIV Behavioral Surveillance (NHBS) study, funded and designed by the CDC, which estimates that 40 percent of the city’s HIV-positive MSM didn’t know they’d been infected. Not having reliable numbers makes it harder to direct prevention efforts.
The city’s record on pharmaceutical prevention has been spotty. When ACT UP asked the city to target New Yorkers at risk with a PrEP awareness campaign, the DOHMH told us the city was afraid its non-emergency 311 hotline would be swamped with PrEP requests and that there were not enough PrEP-savvy practitioners in the city to whom to refer people.
When ACT UP asked the city to target New Yorkers at risk with a PEP awareness campaign, the DOHMH said such a campaign would not be cost-effective. ACT UP countered that candidates for PEP are at the frontline of risk: getting them into care would repay the effort. The group decided to do a PEP sticker campaign of its own, with contact information for city-subsidized facilities that provide PEP drugs to the uninsured. But the DOHMH informed ACT UP that programs at four of six subsidized facilities were not really under way, and all six were afraid of running out of subsidized drugs if demand were too great. The DOHMH suggested that ACT UP’s stickers should instead refer New Yorkers to the 311 hotline. But PEP drugs have to be started as soon after exposure to HIV as possible, and PEP information that 311 now dispenses varies wildly from call to call. The city recently eliminated PEP funds to facilities beyond the six they subsidize, even as the cost for PEP drugs is rising due to recent changes in the state’s guidelines. ACT UP has also documented major PEP-related mistakes—from outright refusal to day-long delays—at several New York City medical facilities, among them the most esteemed. Clearly, training the city’s practitioners about HIV prevention drugs will require more than an ACT UP sticker.
Charging the DOHMH with neglect, ACT UP demonstrated outside the department’s Long Island City headquarters in August and demanded that the department
- fund essential HIV prevention services, even when federal funding is cut;
- gather the data needed to target New York’s at-risk communities for prevention efforts;
- educate the public and medical practitioners about HIV prevention drugs, find and extend care to New Yorkers who could benefit from those drugs, and fund those drugs when people who are uninsured have no alternatives; and
- work with communities at risk for HIV to develop sex-positive, queer-friendly HIV prevention programs that use today’s full range of prevention strategies and tools, building on the early success of safer-sex programs while moving beyond them.
Acting Locally, Thinking Nationally
ACT UP’s local campaigns on HIV prevention revealed problems and gaps that require data collection and research at the federal level. The bedrock of prevention is HIV testing that’s accurate and sensitive to early infection. Undiagnosed MSM, most in early infection, account for 82 percent of new infections, according to a recent study., The recently approved fourth-generation Alere Determine rapid HIV test detects p24 antigen as well as antibodies to document infection much earlier than previous generations. The speedy, universal implementation of this test—and more sensitive tests in the research pipeline—will maximize the likelihood of early detection of HIV infection. A recent study using fourth-generation testing reported that 32.4% of HIV infections diagnosed would not have been detected with earlier, less-sensitive testing.23
Fast-tracking research on HIV infection recency– and new-incidence estimation procedures will aid in gathering more complete, accurate numbers. The annual NHBS study, the source of much of what we know about HIV and at-risk populations, would tell us more if the sample size increased. Real-time PCR sampling of NHBS subjects could determine the incidence of acute infection in those who report an unknown serostatus, and their viral load as well, helping to determine the “community viral load.” NHBS serosurveys need to ensure that participants who say they are unaware of their infection are not simply reluctant to share personal information. Looking for antiretroviral drugs in the blood of persons of unknown serostatus is one possible way. We also need research into possible correlates of HIV infection in subpopulations at the highest risk for HIV, and studying factors that are behavioral (like differences in sexual networks) and biomedical (like incidence of untreated sexually transmitted infections).
We need implementation science to support the scale-up of HIV prevention weapons we already have, as well as a robust research and development pipeline for new biomedical interventions. In the age of PrEP, the development of antiretroviral drugs in long-acting formulations for HIV treatment should be accompanied by their parallel development as prophylaxis. We need to increase research into microbicides (rectal as well as vaginal, in multiple modes of delivery) and into alternatives to the current condom for barrier protection, including but not restricted to new kinds of condoms. In addition, we need research to confirm that these alternatives work effectively for anal as well vaginal sex; if they don’t, we need to develop alternatives that do.
We need to know more about HIV transmission biology. We need to know to what extent viral suppression translates into lower risk of HIV transmission during anal sex among MSM; only two percent of the serodiscordant couples in the much-cited HPTN 052 study that established the benefits of treatment as prevention were same-sex (male) couples. Easy, available assays to detect the presence of HIV in the semen of virally suppressed patients might eliminate the need for some of that research. To help us evaluate when and for whom PrEP is a good prevention choice, we’ll need to monitor for transmission of drug-resistant HIV among patients who’ve received antiretrovirals prophylactically, and understand the barriers to adherence to PrEP medications in the real world. Will a successful vaccine against HIV be the ultimate prevention technology? Its development will depend on expanding basic and applied research into immune response to HIV.
Prevention as Treatment
When the Affordable Care Act goes into full effect, the notion of prevention will have statutory standing for the first time. Local and federal agencies must seize the opportunity, coordinate efforts, and mobilize around HIV prevention. We need to fund a full prevention agenda: easy and accurate HIV testing, sex-friendly behavioral programs, prophylactic drugs and a practitioner’s network schooled in their use, innovative prevention research, and quick implementation of results—all within a larger framework of comprehensive primary care that addresses the various health needs of MSM. To spare the current and future generations of men the infection that badly wounded the last one, the HIV cascade of care—which focuses now on the testing, linkage, retention in care, and treatment of people living with HIV—will have to extend across the great serodivide and reconceive prevention as treatment, as ongoing care for people who are HIV-negative and at risk, arming them with skills and all the tools available, pharmaceutical and other, to maintain their health. •
Design by Bacilio Mendez II, ACT UP/DAWG (the Digital Activism Working Group)
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