Since the FDA first approved pre-exposure prophylaxis (PrEP) for those at high risk of acquiring HIV in 2012, its rollout has been mired in contradictions. The treatment—in which HIV-negative men take the HIV-fighting drug Truvada once daily, which studies have shown to be more than 99 percent effective in preventing infection—has been called a "miracle." And despite initial opposition to the treatment from some concerned that it would lead to riskier sex within the gay community overall, public health organizations have trumpeted PrEP with great fanfare, in dozens of highly visible (and expensive) awareness advertising campaigns across the country.
But though more gay men and clinicians are aware of PrEP than ever, few are actually taking the drug. A March 2015 CDC survey of gay and bisexual men found that though 68 percent were aware of PrEP, and 50 percent would take it, only 4.9 percent of respondents had actually used it. In another 2015 survey of young California men who have sex with men, conducted by UCLA and AIDS Project Los Angeles (APLA), only 9.6 percent of respondents had taken the drug; of those who hadn't, 73 percent were aware of it.
Those who respond to such studies, however, may be self-selecting—the type of people who are better informed to begin with. The actual number of PrEP prescriptions written since the drug was approved in 2012? As of last summer, the best estimate is around 79,000 nationwide, with about 60,000 of those for men. It's unknown how many are still taking the drug or have adhered consistently. But given a 2012 study estimated there are around 4.8 million American men who have sex with men (MSM), that represents around 1.25 percent of them—a trifling number, considering the CDC believes that one in four should be offered the drug by their doctors. For PrEP to counter the spread of HIV at a meaningful level, it needs to reach a much larger percentage of MSM than it currently has.
There are a variety of reasons uptake has been slow, but one major factor lies in stigma surrounding the drug. Studies have found that clinicians may be hesitant to prescribe it to MSM who practice risky sex, and perceived discrimination among MSM themselves may be preventing more of them from taking the pill. Deeply ingrained cultural biases and attitudes are hard to change, no matter how many pro-PrEP billboards you erect.
The most troublesome aspect of PrEP's rollout lies in its lack of uptake among MSM who are people of color. Last February, the CDC estimated that if current infection rates continue, half of African American and 25 percent of Latino MSM will end up infected in their lifetime. Those figures are nothing short of staggering. The larger problem is one of treatment access and quality for HIV-positive Americans in general: only half of positive Americans are currently receiving adequate HIV treatment. But among HIV-negative Americans, black and Latino MSM are among those using PrEP the least.
The 2015 UCLA/APLA survey found that while 13.9 percent of white young MSM respondents were on PrEP, only 6.6 percent and 9.8 percent of Latino and Black MSM were, respectively. And an estimate by Gilead Sciences, Truvada's manufacturer, found that only 9 percent of PrEP prescriptions written have been for African Americans. It's been called "a tough sell" among the gay Latino community, and critics have cited everything from healthcare access to the drug's cost (estimated to be upward of $1,500 monthly without insurance) to larger, systemic barriers in explaining away its low usage among black and Latino MSM.
But one reason behind the disparity in PrEP adoption that's not cited enough is the importance of physically knowing someone like you who's on the drug. Dr. Ronald Brooks, an assistant professor in UCLA Health's Department of Family Medicine, is leading a study called the LA PrEP Stories Project, designed to solicit stories from and interviews with black and Latino MSM who are or are not on PrEP. Launched on January 23, the project is recruiting those men to share their experiences with the drug, with the hope of gaining a more nuanced understanding of what's impeding access and what role stigma is playing in their decision to take it (or not).
Previous surveys and studies have gained more cursory knowledge of the depths of stigma surrounding PrEP. But Brooks's study is dedicated to an in-depth exploration of the way stigma affects participants' perception of and access to the drug. It's designed to track how their identities as gay and bisexual men, as minorities, and as users (or non-users) of a drug that's all about gay sex impact things like their access and adherence to PrEP, how long they stay on it, and their willingness to tell others about their experience. And untangling what's preventing black and Latino MSM from taking PrEP likely lies at the thorny intersection of all those identities.
"What we're finding with non-PrEP users is that it really does affect them if they don't know people who are on PrEP personally," said Omar Nieto, the study's project director. "You yourself can read and hear things about PrEP, but until you have the experience of talking to someone living on PrEP themselves, it's really hard to have a good grasp of the specifics of PrEP and how it works." And though the study is still in its infancy, Nieto noted that they're finding stigma among interviewees in a major way, some of whom cite a generally negative perception of PrEP users among peers as one reason why they might not want to go on the drug—the infamous idea of the "Truvada whore," still alive and kicking.
If knowing someone like you who's on PrEP and hearing their story does turn out to be a major factor in one's decision to take the drug, then the bar to clear for public health advocates who want to encourage adoption is much higher than putting up a few advertisements. And if too few black and Latino men are on PrEP today, that means encouraging adoption among those imperiled segments of the LGBTQ community is an exponentially difficult problem. White MSM are on PrEP because they have more healthcare access, more income, fewer infrastructural barriers to getting and using the drug, and know more people like them who are on it. Solving the PrEP usage problem among black and Latino MSM means tackling head-on the ways our healthcare system and society make it harder for those communities to get the treatment they need. And that's a problem no single organization or researcher can solve by themselves.
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