By Tim Fitzsimons / October 7, 2014 12:09 PM EDT
This summer, HBO brought a film adaptation of Larry Kramer’s celebrated play The Normal Heart to living rooms across America. The film told the tale of Ned Weeks, a gay man living in New York in the 1980s. To a young gay man today, Weeks might as well have been on Mars—or in hell. As AIDS began to ravage his group of friends and lovers, his world crumbled. Death haunted everyone, and it seemed as if nothing could be done.
Today’s headline-grabbing gay struggles are for same-sex marriage and greater legal protection, so you could be excused for thinking the battle against HIV/AIDS in America has been won. But, in fact, we’re still stuck in the trenches. While HIV infection is no longer a death sentence, Americans continue to become infected, at a rate of 50,000 per year. If nothing were to change, a half-million more Americans would be HIV positive by 2024.
This was one reason the Food and Drug Administration in 2012 approved a novel new method of preventing HIV transmission, known as “pre-exposure prophylaxis,” or PrEP. The program involves taking an HIV medication, currently a once-a-day pill called Truvada, in order to prevent HIV infection. Researchers estimate that PrEP is over 90 percent effective if taken as prescribed. The PrEP program also calls for screenings for HIV and sexually transmitted infections at three-month intervals. This addresses a challenge doctors have struggled with for years: keeping at-risk people in contact with medical care for regular testing and rapid treatment.
But despite its promise, PrEP has generated significant controversy in the LGBT and public health communities. Some decry the “Truvada whores” who want the pill only because it will allow them to more safely “bareback,” a negative term referring to men who do not use condoms. Others fear the spread of drug-resistant strains of HIV. And still others worry that abandoning the condoms-or-die messaging developed in the 1980s will invite yet another plague that will again ravage the gay community.
Where the Rubber Meets the Road
It wasn’t easy getting gay men to use condoms in the first place. Despite the evidence that condoms reduce the risk of a slew of sexually transmitted infections, and they’re cheap and easy to obtain, many people do not like to use them. It took tragedy to develop the condom culture that exists today. “It’s a bit of a wives’ tale that my generation started using condoms just because we developed safe-sex literature and gave out pamphlets,” said Peter Staley, a veteran AIDS activist from ACT UP New York. “It wasn’t the pamphlets that made us start using condoms, it was the fact that our friends were dying.”
The AIDS plague transformed gay men’s condom use into a sacred, life-or-death choice, and those who did not practice sex with condoms were stigmatized. But the younger generation is different. Today, few gay men see anyone dying from AIDS, so condom use is declining. Condoms help prevent HIV transmission only if they are used for the duration of every single act of intercourse—and according to studies from the Centers for Disease Control and Prevention (CDC), only one in six gay men reports doing that. It is this group that is driving the ongoing HIV health crisis. Young men who have sex with men (MSM) represent a tiny fraction of the country’s population, but make up over a quarter of all new HIV infections. And that number is growing: There was a 22 percent jump between 2008 and 2010 (the most recent year for which there is solid data). This younger group’s growing infection rate is offsetting reductions in infections in other MSM subgroups. And more than half of these young men don’t know they are positive.
In May, the CDC released its guidelines for who should consider using PrEP. On a worksheet to determine whether a person is “high risk,” an MSM male needs to score only 10 points to be considered a good candidate for PrEP, and just being under 28 years old is worth eight points. This, the CDC says, is the demographic that should be most concerned with preventing HIV/AIDS—but many of its members are not.
Dr. Perry Halkitis, a statistician at New York University (and a gay man who lived through the halcyon early ’80s and the tragic decades that followed), conducts a large cohort study at NYU that looks at the changing sexual and risk habits of young MSM. One of the most striking findings is how unimportant HIV/AIDS is to the millennial generation. While HIV/AIDS was the “primary presenting problem” for gay men of his generation, he said, these days young gay men are more worried about finding a job, housing or paying for an education.
“I think people in my generation are shocked [HIV/AIDS] is not No. 1, and my argument is that it shouldn’t be No. 1. It’s not the same epidemic it was 30 years ago,” Halkitis said. Indeed, 18-year-olds today were born in 1996, the year HIV-fighting antiretroviral drugs were introduced. They have no memory of AIDS.
Poking into the low-slung skyline of West Hollywood, California, are billboards with a photo of an unrolled condom and the words “Why worry?” On the bottom of the ads is a small, red square logo reading AHF, or AIDS Healthcare Foundation.
The AHF operates sexual health pharmacies and thrift shops, and it buys a lot of billboard space for its campaigns. Its Hollywood headquarters has a commanding view of the city’s namesake sign, and its annual operating budget of nearly $1 billion makes it the richest AIDS nonprofit in the U.S. The AHF is also extremely litigious, pursuing legal action against porn studios, drug manufacturers and even city councils. For example, in 2013 the AHF sued Los Angeles County, claiming the county illegally retaliated against it for advocating the enforcement of laws requiring condom use in pornography film shoots. To critics it is a bully, and to supporters it is a righteous warrior.
President Michael Weinstein’s outspoken opposition to PrEP has made him a vilified member of the HIV/AIDS community. In April, he called Truvada a “party drug,” and in August the AHF came out swinging with a newspaper ad campaign called “PrEP Facts” that highlighted the low adherence rates of trial participants. Weinstein said, “We want the public to know that the government-sanctioned, widespread scale-up of PrEP appears to be a public health disaster in the making.”
In late September, Weinstein sat on a panel convened in Washington, D.C., called “PrEParing for the End of HIV.” In contrast to many of his colleagues, Weinstein predicted that expanded use of PrEP would result in more, not fewer, HIV infections: He believes that few people will take the pill daily as indicated and that many will engage in riskier, condom-free sex because they think they are protected. Though he was seated next to other nationally recognized AIDS warriors, Weinstein said he felt the others were ganging up on him.
It is true that in the global clinical trials that established Truvada’s efficacy few participants took the medicine daily. But when they did, studies showed very high levels of protection. Like birth control pills, PrEP works only if you actually use it as prescribed. The same is true of condoms.
While the AHF doubles down on its campaign to discourage HIV-negative men from using PrEP, a constellation of AIDS and LGBT activists, doctors and public health officials are ignoring its warnings and ramping up programs to promote greater use of the prevention method. For the rest of the HIV/AIDS community, the path is clear: To bend the curve of new infections toward zero, another tool must be deployed.
“It’s no longer a sufficient public health policy to solely rely on condoms to prevent HIV,” said Staley, whose ACT UP New York days involved a famous 1989 protest in the aisle of St. Patrick’s Cathedral to protest the Catholic Church’s rejection of condom use. “We have to look at other options.”
Andrew Cuomo, New York’s governor, pledged at this year’s gay pride events in Manhattan to end the state’s HIV epidemic by 2020. His proposal involves PrEP, aggressive treatment of HIV-positive people (known as treatment as prevention, or TasP) and new spending to keep HIV-positive people in the health care system.
Dr. Richard Elion, director of research at Whitman-Walker Health, a Washington, D.C., community health center, agrees with the AHF that some PrEP users may take additional risks, but dismisses doubling down on the condoms-only message. “I have had very little success in changing sexual practices and sexual behaviors,” he said. “With all the education we have provided in the 30 years, people’s behaviors are not rational. It’s sex.”
Elion characterizes PrEP as a “harm reduction strategy.” For millions of Americans, this kind of health care is already routine. It’s the same approach doctors use with birth control and statins, Elion said, and nobody advocates withholding heart medication from a person who may occasionally engage in risky behavior by eating bacon or cake.
“We tolerate obesity, but we don’t tolerate promiscuity. Both are diseases of excess, one way or another,” Elion said.
A Kaiser Family Foundation survey released last month found that only half of MSM males have discussed their orientation with their doctor or had their doctor recommend an HIV test. This lack of transparency, and the inability of patients to speak honestly to their caregivers within the U.S. health care system, is a major factor in the failure to drive down infection, Weinstein said.
“We’re hedonistic in our behavior and moralistic in our attitudes,” he said. “That’s a fatal flaw that’s at the essence of what’s wrong in the United States when it comes to these issues.”