HIV, the virus that causes AIDS, is a virus without an agenda -- anyone can contract it, and we are all on what medical professionals call the "continuum of risk." Unless you're talking about abstinence or masturbation, almost every sexual act falls somewhere on the risk continuum; and belonging to some social, ethnic and economic groups puts people at higher risk for HIV. At the nexus of many contributing factors (economic disempowerment, homophobia, racism, stigma, inadequate school systems and criminalization) are young gay men of color, a group considered by many in the HIV community to be facing "AIDS 2.0" -- a second epidemic.
As we enter the fourth decade in a world that includes HIV, and as our tools to fight HIV in those who are infected become more fine-tuned, many organizations and advocacy groups are turning their attention to what some are calling the "fourth wave" of HIV activism: widespread prevention advocacy.
Attendees at this year's Gay Pride March in New York City saw the AIDS Coalition to Unleash Power (ACT UP) declare an "HIV emergency" in the city. ACT UP cited projections based on statistics from the U.S. Centers for Disease Control and Prevention (CDC) estimating that more than half of young gay men and transgender women may be HIV positive by age 50 if trends persist. Members aboard a float shouted "1 in 2, could be you!" to onlookers. The Treatment Action Group (TAG) -- which began years ago as a working group in ACT UP, and is one of the most recognizable names in advocacy for people living with HIV -- has even turned its attention to prevention, realizing its essential role in ending HIV globally. Jeremiah Johnson is TAG's inaugural HIV prevention research and policy coordinator, ushering in a new era of focus for the organization. Johnson, less than a quarter of a year into his new role, is aware of the challenges that lie ahead in advocating for those who are negative. "It's going to be a very different beast, because there is a different set of community stakeholders in the U.S. that needs to be brought together to talk about this problem," he said.
A Community Response to Prevention Funding Cuts
Unfortunately, as advocacy agendas shift toward prevention, government dollars are not being similarly invested in those most likely to become HIV positive. At a community discussion held in New York City around how best to support young gay men of color in the face of shrinking prevention dollars, a mélange of experts and community members attempted to read the prevention funding tea leaves, which were colored by federal budget slashes affecting organizations nationwide.
One member of Outstanding Beautiful Brothers (OBB), a prevention initiative aimed at young gay men of color and run through Gay Men's Health Crisis (GMHC), seized the microphone during the question-and-answer session and lamented, "OBB has helped us get to a place in life where we thought we would never be." On the funding cuts, he continued, "We come from turning tricks and being homeless and doing so many other things. Now we're here and now we have to stop. Why? I don't understand why we have to go back to where we came from. I thought we were moving forward. It seems to me like we're moving backwards."
Dr. Perry Halkitis of New York University's Center for Health, Identity, Behavior and Prevention Studies was one of the experts at the community discussion. Dr. Halkitis described a study he had performed through the center that followed a cohort of young gay and bisexual men. In the cohort, the rate at which participants became HIV positive (or the "seroconversion rate") was 6.2 percent overall; however, when broken down by race, the rates wildly differed. While white men seroconverted at a rate of 0.5 percent, Latinos did so at a rate of 7 percent, only slightly above average. Young black men became HIV positive at a rate of 21.3 percent. Said Halkitis, "That is an enormous disparity that tells us something about where this epidemic is lodged and speaks to us that this epidemic is more than just about a biological event."
One social problem young gay men of color may face is homelessness, and not having a home is a risk factor for HIV. Carl Siciliano, executive director of the Ali Forney Center, which provides services to homeless LGBT youth (who comprise a whopping 40 percent of homeless youth nationwide), underscored the importance of housing as prevention. While asserting that housing can help reduce sex work, substance use and other factors associated with a high risk for HIV infection, he noted that "New York City provides 250 youth shelter beds. ... [T]here are more than 10 times as many youth who can't access shelter than there are beds," and that LGBT youth were even more disenfranchised by the shelter system due to stigma and homophobia.
Shariff Gibbons, a participant of Outstanding Beautiful Brothers, said at the meeting, "If you are a gay man of color, it's almost like you don't exist."
Dr. Blayne Cutler of the New York City Department of Health and Mental Hygiene said, despite the city's best prevention efforts, "Do I expect that things might get even worse? I have to say that I absolutely do. But that has never stopped us in New York City before, and it's not going to stop us now." TAG's Johnson also understands the massive undertaking that is health advocacy for young gay men. When Johnson sat down with me, he pointed to the need for government policies that are in line with what is necessary for HIV-negative individuals to stay negative. At the forefront of good sexual health, he said, is overall wellness; and the Affordable Care Act is a step toward making sure more people take care of their bodies.
Advocating for the 300 Million
Advocacy for those who are HIV positive means working within a defined community. Out of the 300 million people in the U.S., around 1.2 million are HIV positive, with the number of new cases steady at about 50,000 people per year for the past decade. However, when turning an eye toward prevention, it's the other 298.8 million citizens whose health becomes priority. For those like Johnson and TAG, a good place to start with prevention advocacy is with young gay men of color. Johnson explained, "Among young gay men between 2008 and 2010, there was a 22 percent increase in the rate of new infections." Citing the projection that half of young gay men will be HIV positive by the time they're 50, he added, "If you're a young black gay man, then it might be even worse than that."
As political landscapes change, sequestration hits, CDC prevention dollars disappear and Ryan White funding is dismembered limb by financial limb, Johnson points to the importance of the medical community as a key stakeholder in future prevention efforts, especially with the inclusion of preventive services as an important facet of the Affordable Care Act. "It's essential that we're talking with the American Medical Association and other physician's groups to make sure that they're on board with comprehensive prevention. We need to come up with solutions for young gay men and other 'at-risk groups' so that they can access HIV prevention services when they decide that they need them."
Dr. John Steever of Mount Sinai's Project Impact, which serves HIV-positive adolescents, echoed Johnson's assertions that HIV prevention should be a part of routine medical care. "If you make routine STI [sexually transmitted infection], including HIV, testing a part of primary care, then it's a little bit easier. Of course, the physician's offices have to be set up to deal with the positives. There's no point in offering testing if you don't know what to do with a positive test." For Steever, though medical care may be the best answer to HIV prevention, there are some visible roadblocks. "You have to break down the barriers as best as possible. So, free or sliding scale for people who don't have insurance; really cutting down some of the cost barriers."
As prevention goes the route of primary care, it is fortuitous that the newest "tool in the prevention tool belt," pre-exposure prophylaxis (PrEP), requires a primary care model in order to work. Unlike condoms or HIV testing, PrEP requires regular appointments with a primary care provider -- something to which many more Americans are expected to have access through the Affordable Care Act. Discussing the implementation of PrEP, Johnson explained, "We need government. We need the providers. We need to have the community actually demanding it. We need to make sure that the drugs can actually be paid for."
One activist who wished to remain anonymous was dismayed about the future of PrEP's uptake, especially given the problem with the implementation of post-exposure prophylaxis (PEP). "We don't have effective funding or systems in place to offer this prevention tool at the level we could. If we haven't figured that out, are we going to be able to offer PrEP in a widespread manner? PEP has been around forever and we still haven't done a good job putting that service in place around the country in an affordable, accessible way," the activist commented.
In a dialogue that Johnson describes as "dominated by extremes," he cautions that only a balanced approach to PrEP implementation can be effective. "There are people who think that it's going to tear apart existing prevention efforts in the U.S., and people who feel like it's going to be a so-called silver bullet and end the epidemic," said Johnson. The truth is, he clarifies, "somewhere in-between. We've been doing the counseling, testing, referrals; we've been doing the condoms and we've been using these same sorts of prevention approaches. What we're finding is that we still stay stuck at about 50,000 new infections per year."
Prevention From a Community Perspective
With advocates pushing PrEP as the newest hope in the prevention landscape, what do actual young gay men of color think about the latest efforts at HIV prevention? To answer these questions, and more, I spoke with two young gay black men who are also HIV prevention advocates and friends: Steven Emmanuel-Martinez, program assistant at AVAC: Global Advocacy for HIV Prevention and formerly of both GMHC and the AIDS Healthcare Foundation; and DaShawn Usher, the community education and recruitment manager at the New York Blood Center and secretary of New York City's HIV Prevention Planning Group. They spoke with me regarding their feelings on PrEP, prevention messaging and whether young gay men of color really want to talk about prevention.
Both Martinez and Usher pointed to one of the biggest myths that continues to pervade the discussion around HIV prevention among young gay men of color: The myth that these men do not know about prevention. "There's just no way you can really try to convince me that [we] don't get it. There's just no way." He added, "There's no way to escape it. When you turn on Grindr, you see a pop-up for the latest PrEP survey. When you pull up your Facebook, you see articles on HIV. When you go on Jack'd, you see HIV prevention messages. At urinals there are now ads, as you pee in these club urinals, saying 'Get tested.' And you get condoms. It's really hard for you not to realize that HIV has really infiltrated this community."
Johnson, a gay-identified white male, echoed those sentiments, saying, "Everywhere I go, every social event I go to as a gay man, there's some poster up talking about HIV. I worry that it can enhance that sense of inevitability that you're going to get HIV."
Both Martinez and Usher expressed concern that the crafting of prevention messaging, which often includes messages of inevitability, has turned young gay men of color away from "authoritative" message purveyors and made the population more reliant on social networks. "[Prevention has] become more dinner conversation with friends versus going to some workshop, or some support group, trying to get counseled." Usher added, "It has to be done in a way that it's relevant, it's relatable; people actually want to hear it."
Caught in this tension between "relatable" prevention and the implementation of PrEP is the question of young gay men of color's relationship to the medical community. Martinez commented, "I think a lack of cultural competency between the medical community and young black gay men is a huge barrier."
This is a rift that Steever knows all too well. Describing the young gay men of color who walk through his clinic, he said, "Most of them have had not such great experiences with the medical field before. I try to be very open and welcome exploring what they are interested in doing. You don't want to scare somebody; you don't want to do things that make people feel uncomfortable."
While HIV-positive individuals can rely on infectious disease doctors who know about HIV and are often more willing to talk about sexual health and sexual relationships, there is a palpable fear among many PrEP advocates that primary care doctors, who will be the ones prescribing Truvada (tenofovir/FTC) as PrEP for HIV-negative patients, may be slow to write the prescriptions.
Usher, who asked his own gay-friendly doctor about PrEP, said he was met with hesitancy and excuses. "He knows about PrEP. His comment to me was, 'It's still relatively new. You're not at risk. You're only having protected sex.' If I knew nothing about PrEP and I went in and asked a doctor about it, and then he just automatically shut it down ... I want to take that extra protection for myself right now." Martinez quickly pointed out, however, "But it was an eligibility thing. You're not at high risk, right?"
Is it the doctor's right to determine whether it's best for a patient to take a medication that the patient thinks will help him to keep himself HIV negative? Opponents of PrEP point to poor rates of protection with low adherence and the need for more testing, while advocates for PrEP cite its better protection rates than birth control pills. While daily PrEP taking can have up to 99 percent efficacy, most hormonal contraceptives for women -- including "the pill" -- have a 9 percent failure rate.
Usher pointed to the difficulty for young men to take an active role in their health in current power structures. "When you're a young black male -- forget gay, but just young black male -- [you] listen to the doctor. So there's no questioning whatever it is that they recommend, or they view. Because that's the authority; that's the power." He added, "I do think a lot of men, especially black men, probably have low health literacy, when it comes to whatever the hell pill that they're prescribing me. Just know that I'm just going to take it; it's going to work for me."
With PrEP requiring a medical provider who's competent -- both in meeting the needs of sexually active clients who wish to discuss their sex lives, and on matters of PrEP -- and young black men often having a rocky relationship with the medical community, PrEP's uptake is slower than many had hoped. Not helping the situation is that the CDC has not yet released guidelines on PrEP, only "interim guidance" on its use -- meaning many providers might not feel confident in prescribing it. The early figures on PrEP uptake seem to indicate that women -- especially Southern women -- are at the forefront of PrEP consumption (outside of clinical trials).
Whether PrEP is useful on a community level or only on a case-by-case basis has yet to be seen. Whether to focus on a macro or micro approach is what Johnson called one of the "necessary tensions within public health ... There are just certain things that you can't totally reconcile. One is a population focus and an individual focus. What works for advocacy at the population level could have a really different effect on one individual."
Martinez and Usher had many disagreements on the data being used to describe young gay men of color. Infection rates among the group are skyrocketing, even though studies show, as Martinez pointed out, "We're getting tested at the same rate that white gay men are. We have fewer sexual partners than white gay men." Johnson corroborated that, saying, "We have actually seen that certain reported risk factors in communities of color may be less than we're seeing in white gay men. For example, number of sexual partners has been seen to be less in communities of color."
If behavioral interventions are not working, and biomedical interventions may be slow to take off, what does this spell for the future of this community? Current data predict that half of young black gay men could become positive in the next decade. Usher, doubtful of the data, said, "When you hear some of these statistics, you just have to be careful of how you're presenting it, and in what context. Are you saying we should be fixing something so this doesn't happen? Or is this what's going to happen with what we're doing now -- so let's just keep doing the same shit that we're doing and let it happen?"
Martinez was more encouraged to act than doubtful of the data. "If we don't fix this shit, if we don't have a bigger response to the epidemic now, this is what's going to happen."
How then do we find a way out of this bleak picture that the data seem to paint in broad, unforgiving strokes? Martinez sees hope in two options: finding new ways to capture data and mentorship.
While Martinez understands societal factors like homophobia and stigma, and current interventions address the behavioral and the medical, he wants to quantify the psychosocial. "A little over two thirds of new HIV infections among MSM [men who have sex with men] were from people in committed relationships. If we keep using systemic oppression like homophobia and racism and sexism, what is it that we're missing?
"I want to find a way to measure what I consider the psychosocial. The love. I loved him; I trusted him. The validation. The self-esteem. I feel like there has to be some sort of research instrument that would allow us to really measure those things as drivers of HIV."
The conversation around condoms can only go so far in the context of relationships, especially because this context often implies condomless sex as the norm. "You cannot inject a condom into a person's life if they've consciously decided not to use them with their partner," said Usher. "Other people may not want to introduce condoms after sex without a condom with a partner." Current interventions usually consider the sex life of individuals who are single and do not take into account people in committed relationships, which leaves a huge part of many people's lives unexamined. Usher continued, "I think a lot of prevention has to be centered around harm reduction like we did for the drug-user population. We knew they were not going to stop using drugs; we made their drug use safer."
Usher similarly saw a need to address issues of mental health among young gay men of color. "I think we're so conditioned not to trust people, especially as we get older, that once we finally find somebody that we trust, or that we feel as if we trust, we let our guards down. Young black gay men aren't having a bunch of sex; it's just that we're having sex with people that we trust, people that we know, which puts us at risk."
Usher also pointed out the lack of media-based blueprints for successful relationships as another reason that young black men often don't navigate relationships well. "When it comes to couples, especially as young black gay men, you don't see any true representation of what a successful relationship looks like."
As for the role of mentorship, all my interviewees spoke to the importance of having young gay men of color know as much about their sexual health as possible. "It starts when they're young," Steever said. "The schools play a role; sports teams and coaches play a role in this."
Johnson spoke of the importance of public agencies realizing that they are responsible to the people they serve and that prevention's priority must be to "empower communities to have a voice." As opposed to unequal power dynamics and damning prevention messaging that can induce paralysis, Martinez sees an opportunity for empowerment within existing social networks. "We listen to people who are in our immediate social network," Martinez said.
Many current prevention strategies revolve around intervening in the lives of young gay men of color -- their sex lives; their medical lives; their emotional, mental and psychological lives -- in hopes of preventing the spread of HIV. However, one thing has become abundantly clear in speaking with this group of advocates: If young gay men of color are to succeed, perhaps those not in that population require an intervention. If we are to implement a model of empowerment for young gay men of color, who are more and more "being empowered through their friends and social networks," then those most in need of an intervention are those who care for, interact with and nurture the souls of young gay men of color.
Each wave of HIV activism has taught the global community an important lesson regarding the health of queer people and the value of their lives. And with each subsequent wave, the lesson goes deeper. At first, activists taught about the importance of intervening in queer people's lives as they were on the brink of death; then activists found ways to fight for and win effective HIV treatment; and then advocacy focused more intently on the struggles of people living with HIV in resource-limited nations. With this emerging fourth wave, there are two potential lessons that activists can teach: First, they show us, by the example of HIV prevention, that factors impacting overall health need to be addressed before an event like HIV transmission occurs. Second, they remind us that supporting the health of young gay men of color is a community endeavor that demands a paradigm shift toward a prevention-minded society, and a palpable ethos of mutual care.
Mathew Rodriguez is the editorial project manager for TheBody.com and TheBodyPRO.com.
Follow Mathew on Twitter: @mathewrodriguez.