Anyone who was following the HIV epidemic in 2001 found the news shocking: The US Centers for Disease Control and Prevention (CDC) reported that, in a massive study of young gay men in the United States, a whopping 32 percent of those who were black had HIV. This rate was on a par with those in sub-Saharan Africa, and more than four times higher than the rate among gay men overall. Most researchers were dumbfounded: Why, after some 15 years of widespread campaigns in gay communities urging condom use, was the HIV rate among black men so staggeringly high—and still rising?
Public health has been trying to answer these questions ever since. Even as the epidemic has slowed dramatically in other populations, new infections among black gay men spiked 22 percent between 2005 and 2014. Among black men under 24 years old, infections shot up 87 percent. Why?
That question has lots of complicated answers. But today, many researchers have shifted their attention to a major scientific breakthrough that, they hope, will simplify things considerably. In 2012, a groundbreaking study estimated that sexually active gay men who took a daily (or very close to daily) dose of Truvada, a medication initially developed to treat HIV infection, reduced their chances of getting the virus by 99 percent. The FDA approved Truvada’s use for preventive purposes—what’s called pre-exposure prophylaxis, or PrEP. More recent research has put PrEP’s effectiveness for people who take it faithfully at 100 percent. Finally, after more than 30 years of the epidemic, there is a prevention tool other than condoms.
But the effort to turn PrEP’s promise into a reality is providing insight that is valuable beyond HIV. The long, failing attempt to crack the riddle of black gay men’s higher HIV rate is a cautionary tale for any public-health system operating in a world with endemic inequity.
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If ever anyone was going to grow up to be an HIV-prevention researcher, it was Greg Millett, who was at the CDC when the 2001 study broke. Coming of age in 1980s Brooklyn, the son of a Panamanian microbiologist at St. Vincent’s in Greenwich Village—the hospital that became the epicenter of the AIDS epidemic in New York—Millett knew he was gay from an early age. At conservative Dartmouth College in New Hampshire, his coming-out (in the school paper, no less) prompted what he calls “a bit of a ruckus. Lots of people came up to me and said, ‘There’s no way you’re gay; you’re masculine and great at sports.’” He remembers being the only openly gay black person on campus, at a time when there were not more than 10 openly gay students at Dartmouth of any kind.
When he graduated and returned to New York in 1990, the AIDS epidemic was already raging. By the time he was 21, Millett had seen 18 of his friends die within the course of a single year. Aiming to overcome his personal fear of the disease, he volunteered at Gay Men’s Health Crisis, running HIV-prevention workshops for black and Latino men. But he wanted to delve deeper into the science, so he entered the prestigious public-health school at the University of North Carolina at Chapel Hill. “It was like the skies fell open for me,” Millett recalls. “I fell in love with being able to design studies and interpret statistics.” When he graduated, the CDC invited him to Atlanta to work on HIV prevention for young gay men. With no truly effective treatment for the disease discovered until 1996, it was the heyday of so-called behavioral interventions—programs that brought gay men together to talk about how to make safer sexual choices and reduce their risk.
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Throughout the 1990s, little research was done into racial disparities in the HIV rates for gay males; the prevailing assumption was that all sexually active gay men were equally at risk. But then, in 2001, came the shocking new data about black men. Millett still recalls that revelation vividly. “At CDC, there was a lot of incredulity that the rates could be that high,” he says. The culture at large sought to understand the statistics in moralistic, finger-pointing terms: Gay black men were engaging in uniquely dangerous behaviors, the public thinking went; hence their higher HIV rates.
The vague notions of black gay men as uniquely reckless crystallized around the idea of the “down-low”— essentially, the notion that nominally heterosexual black men were secretly having sex with other men, contracting HIV, and then passing it on to their unsuspecting girlfriends or wives. A New York Times Magazine cover story delved into the idea in 2003. The down-low hysteria peaked in 2004, when J.L. King—whose best-selling memoir professed to be a tell-all of the DL life—went on Oprah Winfrey’s show to “expose” the phenomenon.
The racially charged presumption that riskier behavior—such as more sexual partners, less condom use, and more drug-fueled sex—caused higher HIV rates among gay black men deeply troubled Millett; so did the fact that the CDC continued to put its money into programs to change that behavior. “There were no behavioral interventions that had ever reduced HIV rates except needle-exchange programs,” he says. “So why were we doing them? It was very uncomfortable to bring up [this fact] at CDC, because those programs were meant to show Congress that we were doing something.”
Millett began researching the down-low theory himself. By the time of Winfrey’s broadcast, he had already debunked some of its core assumptions. His data showed that bisexual and non-gay-identified black men used condoms more than those who embraced the gay label. “I was invited on the show to refute King, but CDC leadership told me they declined the invite,” Millett recalls. It was in the middle years of George W. Bush’s administration, and conservative Christian leadership was ascendant in Washington. The CDC, Millett adds, did not want to promote the idea that it was going to bat for black men who slept with men.
Still, Millett and his colleagues—including John Peterson, Rich Wolitski, Ron Valdiserri, and Ron Stall—were determined to delve into the risky-behavior idea. They combed through countless studies going back nearly two decades and collated the results. Voilà—a pattern emerged. In their landmark 2006 paper, they showed that, historically, gay black men had in fact reported engaging in less risky behavior than their nonblack counterparts. They also found that gay black men had much higher rates of incarceration, with its attendant same-sex activity. And because of factors like poverty and unemployment, they had less access to healthcare—a deficit that, according to Millett, “launched a whole cascade of risk factors,” such as being less likely to be tested for HIV; or treated if they were found to be HIV-positive (which dramatically reduces the chance of passing it on); or treated for other sexually transmitted diseases that make one more susceptible to HIV; or given overall information about staying HIV-free. The study finally disrupted the public-health consensus that behavior alone was the problem.
But what really solved the riddle was an emerging body of research finding that gay black men in urban centers—far more than gay men of other races—tended to choose sexual partners from within very tight, dense networks, and often chose significantly older men. (This was also true of black women, among whom the infection rate had been similarly resistant to prevention efforts.) That closed circle of sexual partners created a horrific feedback loop.
“The background prevalence of HIV was already so high,” says Kenyon Farrow, a gay black man and the director of US and global health policy for the Treatment Action Group. “HIV rates had been allowed to climb with no real effective interventions in place for so long that [getting HIV] became a law of averages. I’d always say to people, ‘If I go to a gay-black-male hangout in New York City, the likelihood I’ll end up sleeping with someone HIV-positive is one in three—and they probably don’t have healthcare.”
This research, paired with Millett’s, marked a seismic shift in the public-health world’s understanding of the epidemic. “It was a collective ‘aha!’” Millett says. “You’d hear sighs and wows at conferences, because these factors hadn’t been discussed before.”
In the decade since Millett’s breakthrough, the governmental approach to reversing the HIV rate among gay black men has shifted dramatically. The Obama administration prioritized funding for an effort that had begun inside the CDC: shifting the focus from behavioral programs to HIV testing and then, for those who test positive, getting them into regular medical care. In 2011, studies confirmed that effective HIV treatment could virtually eradicate someone’s risk of passing on the virus.
Still, new infection rates weren’t coming down. Millett, who worked on this issue within the Obama White House, felt like he’d hit a wall. In 2014, he cowrote a study finding that even if nearly all HIV-positive gay black men in Atlanta were diagnosed and entered treatment, it wouldn’t be enough to significantly close the gap in HIV rates between them and white gay men. “We’ve waited so long, and we have so many men who are HIV-positive, that testing and treating alone isn’t enough,” he says. “These disparities would persist for decades to come.”
Then came PrEP.
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Despite the controversy that the therapy stirred—critics worried that it would encourage gay men to throw caution (read: condoms) to the wind and suffer a spike in other STDs—some places that have already been wildly successful in lowering infection rates, like San Francisco and Massachusetts, have added promoting PrEP to their arsenal. “I have a strong feeling that they will be successful at ending the epidemic as we know it,” said Anthony Fauci, the director of the National Institute of Allergy and Infectious Diseases, speaking to The New York Times. Others echoed his statement. “I’m convinced PrEP has to be part of the equation at this point, unless black gay men are going to start using condoms 100 percent of the time, which isn’t feasible,” says Ron Simmons, the longtime head of the AIDS agency Us Helping Us, which focuses on the black community in Washington, DC. “The only way to break this cycle is to have PrEP for a couple of generations.”
But San Francisco and Massachusetts have relatively small black populations compared with places like DC. And so far, it seems, gay black men have been slow to get on the PrEP train. A recent large California study—which confirmed the effectiveness of PrEP in an everyday, real-world setting—found that PrEP’s adoption was low among gay black men, “especially given their risk for HIV,” said a study leader.
My Brother’s Keeper, an LGBT-friendly health center in majority-black Jackson, Mississippi, started a PrEP clinic in early 2014, getting patients access to Truvada either through their existing insurance or directly from the drug’s maker, Gilead, which provides it free of charge to low-income applicants without insurance. Twenty percent of the clinic’s PrEP patients are white, says Dr. Leandro Mena, the medical director. Most came in asking for PrEP on their own initiative, having heard about it through friends or social media or hookup apps. Their average age is 45, their average income is $50,000, and most are privately insured. Crucially, once they’re prescribed Truvada, most of them take it daily.
To spread the word among Jackson’s young gay black men, about a quarter of whom are already HIV-positive, the center does significant community outreach. But fewer than 10 percent of the young men with whom they connect show up, Mena says. Among those who Mena’s team actually get onto PrEP, just 35 percent are still coming in for follow-up tests six months later.
One reason PrEP is a hard sell, says Mena, is that the men he’s reaching can’t “visualize” their risk. “I ask them what if they had a one-in-four chance of winning the lottery, and they say, ‘I’d be buying lottery tickets like crazy!’ Then I say, ‘That’s your chance of getting HIV in this city.’”
Such reasoning helps, but many barriers remain. The young men may be unemployed or homeless, so taking a daily pill to prevent HIV isn’t their first priority. They may be living with parents and don’t want to bring an HIV medication home. Many found the process of activating Gilead’s cards to get free meds too complicated; or they didn’t want to wait hours to apply for food stamps, which help prove to the company that they’re eligible; or they didn’t have a way to get to the pharmacy. “Many of these guys have never interacted with the healthcare system before except to go to the ER,” Mena says.
A study in Chicago last summer also found via blood testing that, among 200 gay men ages 18 to 22, black participants didn’t take optimal doses of Truvada to stay HIV-negative. Study leader Dr. Sybil Hosek offers an explanation: “So many other things were pressing—not having jobs, housing, food. Getting HIV was just one other thing worrying them, along with the risk of getting shot on the street.”
PrEP got an unprecedented PR boost recently when it was featured prominently in a plotline on How to Get Away With Murder, a Shonda Rhimes–produced TV show with gay characters and a large black audience. “I want Empire to do it next,” says Farrow, citing another show with a huge gay black following. But a large piece of the challenge is rooted in structural inequalities. At Emory University in Atlanta, Dr. Colleen Kelley and her colleagues found that levels of awareness regarding PrEP and the willingness to follow a daily regimen were actually equal among black and white gay men. “The big difference was access to healthcare,” she notes. Georgia is one of 19 states—most of them red states in the South and Midwest—that have refused to expand Medicaid under the Affordable Care Act.
“I’d jump for joy if we could do that today,” Kelley says, “but it’d still take some time to really see a difference in PrEP uptake. I think we need to see community-based, open-access programs offering low-cost or free PrEP and related doctor visits targeted at black gay men.” Kelley says she’s working on such a program in Atlanta, hopeful that the city can seed the adoption of PrEP “if you get a core group of men on it who then tell their friends they’re having a good experience.”
Such programs are under way in large cities like New York, San Francisco, and DC. But there is still debate about offering PrEP to uninsured people without offering comprehensive healthcare as well. “I don’t want us to ignore that there’s still no basic guarantee of healthcare in the former Cotton Belt and create these stand-alone PrEP outlets,” Farrow says. “PrEP should be among whatever you need from a health center, not a thing where you’ll only get a doctor’s visit if you want PrEP.”
Millett, meanwhile, insists that it can’t be an either-or proposition. “The problem is so big that anything is helpful,” he says. “It takes time to get comprehensive healthcare up—and in the interim, how many more infections are there among gay black men?”
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Perhaps the key to making PrEP work for these men will be found in a recent study in Los Angeles, DC, and North Carolina. The study—which researchers hope to unveil at the International AIDS Conference this summer in South Africa—asked what it would take to keep at-risk gay black men HIV-negative over time. PrEP was a part of the study, but its primary focus was counseling, to help the participants address challenges in their lives beyond staying HIV-free.
“We didn’t start by asking them if they wanted to take PrEP, but with a comprehensive assessment with a team of caregivers,” says Darrell Wheeler, a researcher at the State University of New York at Albany who helped lead the study. So if someone needed housing, the team worked on that with the participant, or helped him organize a budget: “You could come back for an entire year and never take PrEP, and we would talk about your housing instead.” Meanwhile, the study monitored lab work to look for correlations between life events and sexual health.
Impressively, nearly 90 percent of the men remained in the study over the course of the year. “I’m going to go out on a limb and say that was because the men were cared for in a way that centered on their needs,” Wheeler asserts. “They would say, ‘It means a lot that you took the time to understand that I was facing these issues of incarceration, to go over my résumé with me, to adjust your schedule to meet when I needed to see you.’”
The results suggest strongly that providing PrEP in a vacuum isn’t enough. Previous studies have found that people with high levels of trauma, depression, anxiety, and substance use have a harder time both staying HIV-negative and adhering to their meds once they’re diagnosed as HIV-positive.
Millett points to what he sees as a hopeful sign: Research shows a basic openness to PrEP among gay black men. A new CDC study of black and Latino men in Chicago, Fort Lauderdale, and Kansas City found that, presented with the option of condoms, PrEP, or condoms and PrEP, the men most at risk for HIV said they’d prefer PrEP. And he points happily to CDC data released in December showing that HIV rates among gay black men finally appear to have plateaued. When researchers looked more closely at the shocking spike in the past decade, they found that between 2010 and 2014, as public-health programs shifted to testing and treatment, infections among gay black men increased by just 1 percent.
“There’s a small part of me,” Millett says, “that’s really angry that it’s taken this long for us to recognize what the issue is, and where we need to focus to turn around the problem.” He ticks off the barriers faced by gay black men: “Lower income, less education, less employment… We need to minimize these disparities. But we also don’t have the luxury to wait for the end of discrimination and the emergence of socioeconomic parity. A lot of this could work even without the perfect social system.”