The miracle AIDS drug that people refuse to take
The Truvada pill (Jeff Chiu/AP)
By Richard Morgan January 29
When the FDA approved a drug to reduce the risk of HIV infections in July 2012, gay men rejoiced. If taken daily, Truvada works like a vaccine against HIV, effectively halting its spread. The Centers for Disease Control and Prevention hailed it as an “important new tool” in the fight against the disease. Slate described it as “a miracle drug.” President Obama imagined an “AIDS-free generation.”
It hasn’t worked out that way. Truvada isn’t making gay men healthier and safer; few are using the drug at all. And after years of decline, sexually transmitted diseases are spreading fast across the United States. From 2005 to 2014, HIV diagnoses jumped 6 percent among men who have sex with men, with spikes of 101 percent among Asians, 24 percent among Latinos and 22 percent among blacks. Six in 10 gay African American men will be HIV-positive by their 40th birthday, according to some estimates. Transmission continued to climb even after Truvada hit the market.
Doctors worry that we’re heading toward a health mega-crisis, fueled by the fantasy that sex in 2016 is safer than it was in 1986. And gay rights groups are largely to blame. Rather than educating men about Truvada, they’ve focused on stamping out the stigma around HIV. Not only do these campaigns minimize the dangers of the disease, they tiptoe around strategies for prevention. After all, why worry about catching something that isn’t a big deal?
Truvada has tumbled into a culture of careless cheerleading that is putting gay men in danger.
In 2004, Truvada hit the market as an HIV treatment called PEP, or post-exposure prophylaxis. But scientists quickly saw the drug’s potential. With a couple of tweaks, PEP became PrEP — pre-exposure prophylaxis. It works like birth control: Users who pop a pill every day are up to 99 percent protected against HIV, even if they have unprotected sex with someone who’s positive.
The FDA approved Truvada’s use as PrEP in 2012. It was precipitous timing. The rise of successful HIV treatments and broader cultural acceptance of gay life had turned HIV from grim reaper to nagging doctor, emboldening gay men to view condoms as cliche or passe, fear-mongering hetero-normative shackles bullying their inner unicorn spirit animals. Indeed, gay slang for condom-less sex is “uninhibited.” Unprotected sex among gay men jumped 20 percent between 2005 and 2013; 57 percent of gay men said they had had unprotected anal sex at least once in 2011. As national sex-advice columnist Dan Savage told me, “People are acting like it’s 1978 again and we’re all at the Mineshaft.”
Truvada, researchers figured, would offer another form of protection against HIV, which 492,000 gay U.S. men are at high risk of contracting, according to the CDC. Yet so far, only 21,000 prescriptions have been written.
One problem is cost: Truvada runs about $1,300 a month. But it’s covered by most insurance plans, and Medicaid and many municipalities regularly distribute the drug for free. Gilead, Truvada’s maker, offers discounts, too.
Additionally, many men are reluctant to take on the burden of a daily medication regimen. Others are just bad at keeping up with a daily pill. From 2012 through 2015, one set of researchers tried to get 557 men and transgender women who have sex with men to take the pill for 48 weeks and attend a handful of study visits. A fifth didn’t stick with it. In another 48-week study, 200 young men were given Truvada and told to take it daily. By the end, only 35 percent were regularly doing so. An additional 30 percent had stopped their intake entirely. In other words: Though Truvada saves us from HIV, we still need saving from ourselves.
There’s also the stigma. While Truvada is gay America’s guardian angel, its users are persistently labeled “Truvada whores”: men who sleep around, unsafely. Others worry that they’ll be pegged as HIV-positive, since Truvada can be used as a treatment for those already infected. One ongoing study of young gay men found that 79 percent knew about Truvada but only 11 percent had tried it. Many non-users said stigma kept them away.
Even doctors are reluctant to prescribe it. Melanie Thompson, the principal investigator of the AIDS Research Consortium of Atlanta, told NPR in 2014 that some medical professionals worry that their patients will stop using condoms if they take PrEP. In that same story, a CDC spokeswoman cautioned that health-care providers’ lack of awareness is one of the major challenges to PrEP’s success.
Meanwhile, the number of new HIV infections has begun to rise among gay men, even though it is declining in the overall population. In some cities, the numbers are downright apocalyptic: Gay black men under 25 in Atlanta have one of the highest incidences of HIV ever recorded in the developed world. One in 3 people there learn that they’re HIV-positive only after they already have AIDS. Young people — that is, under 30, younger than the epidemic itself — are the largest group of new HIV cases, especially young minorities. In the past decade, diagnoses among black and Latino men younger than 24 who have sex with men rose 87 percent, compared with 56 percent among their white peers.
In other words, HIV is bubbling into an epidemic again.
While the crisis isn’t exactly in spite of the work gay groups are doing, they enable it. Some, such as the Los Angeles-based AIDS Healthcare Foundation, actively opposed FDA approval of Truvada, arguing that it gives users a false sense of security because most users don’t take the drug consistently, making it less effective.
Others pretend that the hard, important mission around HIV is not preventing people from getting it but rather the more familiar battle of accepting those who are infected, of sharing stories and cloying hashtag slacktivism. Rather than trying to destigmatize Truvada, in other words, they’re destigmatizing HIV. “Since the ’90s, HIV education has been about ‘awareness’ and demystifying, destigmatizing the virus, much, much more than actual prevention,” Savage says. “They’re mostly [HIV-positive] guys themselves who are in it to reclaim their place in society. They talk about gay men like they’re all smart and rational, ignoring the fact that people with erections are often reckless.”
Take the bewildering social-media campaign in which gay men and allies posed with glasses — trendy! — next to the phrase “HIV Smar+” (see what they did there?). The posters offered no information about what “smart” might be. Or HIV Equal, which operates under the slogan, “Everybody has an HIV status. We are all HIV equal.” Sample ads show shirtless men with the words “Status: Fly” and “Status: Fun.” The campaign’s stated mission is to “help end stigma against people living with HIV (PLWHIV), and to link or relink HIV-positive individuals into proper care and treatment.”
The sunny froth reflects a broader shift in gay culture — a focus on celebration over investigation. The Out 100, an annual who’s who of gay, lesbian, bisexual and transgender influencers (and straight allies) that was published in November, included 15 activists, two YouTube stars, one meteorologist, one president of Food Network and zero doctors, researchers or public health officials. In an interview with Obama, Out’s Ally of the Year, HIV came up once, briefly, as a nod to the president’s early days fighting housing discrimination in 1980s Chicago. It felt as long-ago as “Angels in America,” “Philadelphia,” “Rent” or any other artifacts of the ’90s heyday of AIDS awareness.
Of course, nobody should be ashamed of having HIV. It’s not a death sentence, but it’s not a new lease on life, either. Everyone who has HIV wishes they didn’t. Today’s power-of-positive-thinking optimists ignore that, leading by example with a model that aims to be laissez faire but ends up as plain lazy.
Even when gay groups embrace Truvada education, their efforts seem silly. Take Public Health Solutions, a nonprofit whose self-described mission is to “help illuminate critical public health issues.” In November, it debuted a profanity-laden public-service announcement on YouTube ending with the tagline “WTF is PrEP.” So street! So effective! If that’s what the group went with, what were the ideas it rejected?
I happen to know, because, as luck would have it, in April I was part of a Public Health Solutions focus group. Twenty-five gay men, almost all white, were assembled to give feedback on some scripts and share general thoughts about Truvada. The session was managed by Kenny Shults, a comedian who told HIV+ magazine (which goes by Plus, of course): “Why get tested? What’s the point if testing has no impact on how I live my sex life.” His day job, for the record, is working for a health consultancy.
At the focus group (full disclosure: they gave me $50 and a sandwich), one script involved a gay man readying for a big night out — getting dressed, fussing with his hair and popping a Truvada. The line was something like: “I like to party. But I like to be safe, too.” The slogan was something like: “Prep for life. Prep for possibilities.”
No, no, we all told Shults; maybe the scriptwriters were too corporate and out-of-touch to know this, we explained, but “party” is gay slang for lots of dangerous activity, including the use of crystal meth, sometimes with needles. Shults nodded, made notes and thanked us for our input.
But later, along with the WTF ad came another one: It shows a blond white man dancing shirtless at a club and saying, “I like to party.” Then it cuts to him sitting on a couch, prowling Grindr, when an alert pops up on his phone: “Time to prep!” It’s not just that he uses the line we in the focus group all warned against. It’s that the very title of the video is “I Like To Party.” It was the activism equivalent of using the AIDS Memorial Quilt for a boys-will-be-boys toweling off after sex with a stranger.
These ads, Shults and others say, are supposed to reach people who aren’t motivated by the “this can protect you” message. Really, though, they just turn safe sex into a joke. That’s a mistake. More than 60 percent of new HIV infections in the United States are transmitted by people who know they have the disease. An additional 30 percent are transmitted by the 13 percent of HIV-positive Americans who don’t know their status.
With numbers this serious, the time for sunny slogans has passed. It’s time to make knowledge infectious. It has side effects we can live with.