When Truvada was introduced four years ago as a way to prevent HIV, public health leaders didn’t welcome the drug with open arms. The head of the AIDS Healthcare Foundation panned the once-daily pill as a “party drug.” Other health officials claimed that taking Truvada would cause a wave of wild unprotected sex. Even members of the LGBTQ community parroted the criticism, with one gay journalist (regretfully) labeling some users “Truvada whores.”
But the last four years has seen a shift in attitude. More and more Americans are embracing pre-exposure prophylaxis (PrEP), the HIV prevention method that requires a daily dose of Truvada to reduce viral risk. And more and more prescriptions are being written for the antiretroviral drug. While PrEP is growing in popularity, a new study out of the University of California released last month suggests that the populations most at risk of HIV infection are not the ones benefitting from the prevention strategy.
In a survey of gay and bisexual men in California, only a handful of participants reported having taken PrEP. PrEP use was highest among young white men, at 13.9 percent. For young Latino men, that figure was cut by more than half, while young black men represented less than 10 percent of people who started PrEP.
“This is not reflective of the HIV epidemic at all,” says Shannon Weber, founder of Please PrEP Me, an online directory of over 230 clinics in California that provide PrEP. “It is reflective about access, and where and how people are getting that information.”
Not Without Flaws
Research so far shows that PrEP is a successful tool in HIV Prevention. A Kaiser Permanente study published last year found that none of the people taking Truvada, the only medication approved from PrEP in the United States, contracted the virus after having frequent unprotected sex with HIV-positive partners. Other major studies discovered that, when taken four or more times a week, the preventive drug is 100 percent effective against the spread of HIV.
“The success rate has been quite astonishing,” says Alan McCord, director of education at Project Inform, a California-based advocacy group for people living with HIV and Hepatitis C. “[There has been] really great evidence showing that intervention works.”
But what many advocates tout as a victory in HIV prevention is not without its problems. Black and Latino gay and bisexual men are most at risk for contracting HIV in their lifetime, more so than any other group. That means at this rate, one in two black men and one in four Latino men who have sex with men will be diagnosed with HIV at some point in their lives, according to the U.S. Centers for Disease Control and Prevention estimates. Yet, as the University of California survey shows, black and Latino men are far less likely to use or even know about PrEP than their white counterparts.
“Black and Latino men who have sex with men, who are overrepresented in the epidemic, have low threshold access to the services,” says Dr. Demetre Daskalakis, assistant health commissioner overseeing the Bureau of HIV/AIDS Prevention and Control at the New York City Department of Health and Mental Hygiene.
It’s a broad racial disparity first reported in June by Gilead Sciences, the biopharmaceutical company that makes Truvada. White gay and bisexual men made up the biggest gains in PrEP usage in 2015, although they’re far less likely to contract HIV in their lifetime. PrEP use among black men, on the other hand, has dipped since 2012. So while prescriptions for Truvada continue to rise significantly, McCord says, “What we’re not seeing is perhaps where PrEP is needed and that is in higher risk communities.”
The same holds true for cisgender women and youth. While HIV transmission also disproportionately impacts women of color and people under 24, they represent a small fraction of PrEP users – less than 20 percent in total, according to Gilead. Transgender women of color also face significantly higher rates of HIV infection, but it’s unclear how many trans people are currently on PrEP (advocates put the number on the low end).
These statistics go to show that doctors and health counselors fail to engage those vulnerable groups in HIV prevention. And that leaves people most at risk of infection without an additional – and effective – tool to keep them safe.
“This is where we see some of the gaps,” Weber says.
The Barriers to PrEP
California, where Weber is based, has the fifth highest rate of PrEP use per population, according to Gilead. It follows Florida, Illinois, New York and Massachusetts. But only Florida and New York are among the states with the highest lifetime risk of HIV diagnoses. New York is an outlier, though – the states with historically high infection rates are clustered in the South. Yet, the majority of those Southern states have the lowest number of PrEP use, suggesting that cultural and political barriers play a role in the disparity.
Those Southern cities most susceptible to an HIV outbreak – El Paso, Atlanta, Jackson, to name a few – are also in states that haven’t expanded Medicaid, which does cover the costs of Truvada after a small co-pay. That means the preventive drug, which can cost upward of $1,564 for a month’s supply, has become financially out-of-reach for hundreds of thousands of eligible PrEP users because GOP lawmakers refused to make healthcare accessible to people living in poverty. “Low cost services for HIV-negative people [are] practically nonexistent,” says David Evans, director of Research Advocacy at Project Inform.
Other factors play a role in limiting access to PrEP for vulnerable populations, particularly in the South. Transportation may be inadequate, especially in poor rural and urban areas, making routine doctor visits nearly impossible. Health clinics may lack the resources necessary to provide at least sliding-scale services to low-income people because of deep budget cuts. And public health departments may be so strapped for cash that they can’t meet the prevention needs of their community.
People who could benefit most from PrEP are “really falling through the cracks,” Evans says.
Stigma surrounding sex, sexuality, gender identity and HIV only serve to intensify these obstacles. Though many doctors already discriminate against HIV patients, the idea that broad access to PrEP will encourage irresponsible sexual behavior has caused physicians to refuse preventive care, advocates say. Others will create such a stigmatizing environment around sexual choices, acting as gatekeepers of good and bad behaviors, that patients will eventually give up on care.
“Frankly, behaviors are just things that people do,” says Daskalakis, a self-described “gay health warrior” who’s provided HIV services out of sex clubs in the city. “If you’re having condom-less sex, it doesn’t sound like a bad idea to be on pre-exposure prophylaxis. The only way to have that conversation is to not be judgy about it.”
These thoughts of stigma, of course, get internalized. The University of California study found that most young adults would be concerned if loved ones found out they used PrEP. And while the bulk of men surveyed agreed that PrEP use should be encouraged, young black men were less likely to believe PrEP would an effective prevention tool. That means a large swath of people who could benefit from PrEP aren’t even asking for information because of shame, fear and ignorance.
“[Stigma] makes it really, really hard for PrEP awareness efforts to move forward in any sort of public way,” Evans says.
The issue is far more complicated for transgender people, who already face discrimination in healthcare because of their gender identity. Transgender people not only have to deal with HIV stigma, but also with poor medical services, which make its less likely that they’ll seek out PrEP than any other group. “What we’re going to need to do is train providers to provide cultural competent care” if we want to see PrEP use increase, Evans says.
But PrEP is much more than taking a small blue pill every morning. It’s an all-around – albeit involved – approach to HIV prevention, says Leandro Mena, director of the Center for HIV/AIDS Research, Education and Policy at the University of Mississippi Medical Center. People who start PrEP must visit their doctor every three months to make sure they’re sticking to the regimen. They’re also expected to wear condoms every time they have sex to reinforce protection. Health officials also want PrEP users to test for HIV and sexually transmitted diseases regularly so diseases are dealt with from the onset.
By not engaging people at high risk for infection, they’re missing out on a chance to stay on top of their health, he says. “[PrEP] is a great opportunity that we have to offer health services to a population who doesn’t have health services,” says Mena, who runs the Crossroads Clinic in Jackson, Mississippi, the only publicly funded HIV/STD clinic in the country’s poorest state.
Where does PrEP go from here?
More and more American cities are investing in HIV prevention for its high-risk populations, though. Some have released public service campaigns, while others have launched comprehensive public health strategies.
Last year, San Francisco and Los Angeles ramped up efforts to increase PrEP use among men who sleep with men and transgender women after receiving grants from the CDC as part of the agency’s Project PrIDE initiative. In June of this year, MAC AIDS Fund announced a two-year, $1 million citywide program in Washington, D.C. to educate and promote PrEP use among black women — one of the groups most at risk in a city that once had the worst HIV rates in the country. Last week, researchers from the Rollins School of Public Health at Emory University in Atlanta launched a searchable nationwide PrEP provider database. And in the coming months, about 70 community-based clinics in underserved areas throughout New York City will start providing PrEP with the support of the city’s Department of Health and Mental Hygiene.
“People who don’t have a voice aren’t going to be walking into a clinic with a giant rainbow flag on it,” like the ones in Chelsea, the West Village and other LGBTQ-friendly neighborhoods, says Daskalakis. “We’re creating the infrastructure in places that may not have that giant rainbow flag, and we’re really proud of that.”
Daskalakis admits that, because PrEP is still in its infancy, it’s hard to discern what impact the intervention method has had on new HIV diagnoses so far. But the public health official anticipates that decreases in HIV infections due to PrEP will accelerate within the next three years.
That downturn won’t be meaningful, however, if it’s only happening in one population, Daskalakis says. So, for example, if new diagnoses are declining for middle-aged insured white men, but are steady or rising for youth of color, then there’s no real progress. “The numbers may be down, but that’s not the way to end an epidemic. It has to happen in every single group,” says Daskalakis. “The way to do that is to have a very clear consciousness about race and equity.”
One way to make sure all groups have access to PrEP is by folding HIV prevention into routine health care, Weber says – similar to how family planning questions are asked whether you’re seeing your gynecologist or your regular doctor. Another way, she adds, would be to expand the types of available PrEP methods so that people can choose the approach that works best for them.
And that’s on the horizon. While daily Truvada is the only PrEP regimen approved stateside, clinical studies analyzing other preventive drugs are ongoing. Last February, global health nonprofit PATH launched a study testing an injectable form of PrEP at clinical sites in New York, New Jersey, South Africa and Zimbabwe. Researchers are also studying the effectiveness of rectal microbicides – compounds that protect against HIV infection – when used as a topical lube during anal sex. Other methods being examined include preventive vaccines, vaginal rings and vaginal gels and films.
“This pill is just the beginning,” Weber says. “It’s important, as we’re thinking about what it is that we need and what are the systems that we’re building, to recognize that it’s not just this one blue pill — that there will be more.”