PrEP Gave Us a Tool for Ending HIV, But It Has Failed to Deliver

Illustration: Rebecca Fassola

A few years ago, maybe 2016 or 2017, Kenyon Farrow traveled to Atlanta for work, where one of his Lyft drivers was an older Black woman. She struck up a conversation regarding why he was in town, and he told her about his work in HIV advocacy. He mentioned PrEP, the healthcare regimen that includes taking medication to prevent HIV transmission. The driver was confused initially and then curious: How long had this prevention tool been available? Farrow explained that the FDA had approved the first antiretroviral medication for PrEP in 2012. At that point, she started crying so hard she had to pull the car over. Then she explained that her two gay nephews, at the time aged 21 and 25, had been diagnosed with HIV in the years since. Their infections could have been prevented by PrEP but, as Farrow, the managing director of advocacy and organizing at PrEP4All, put it to Jezebel in a recent interview, “People didn’t know about it.”

If only those two young men were exceptions. Perhaps then the 10th anniversary of the FDA’s approval of Truvada for PrEP, or pre-exposure prophylaxis, on July 16, 2012, might be a cause to celebrate. It could have been an opportunity to look back on how a biomedical intervention altered queer culture and helped eradicate HIV once and for all. With 99 percent effectiveness with consistent adherence—which for the bulk of the past 10 years meant sticking to a daily pill, as well as doctor’s visits every three months and regular lab work—PrEP is theoretically as useful as a vaccine against HIV.

Those who adhere to PrEP’s somewhat rigorous regimen do have, it seems, a different outlook on sexuality. A few years ago, an article I wrote attributed the rise of public sex in New York’s queer spaces in part to PrEP. Public sex among predominantly men who have sex with men has only become a bigger reality in New York nightlife, with several recurring parties hosting back rooms. But sheer data suggests that said sexual liberation—“Sex Without Fear,” as Tim Murphy’s seminal 2014 New York article described it—remains reserved for a privileged class.

“America cannot consider PrEP a success until we see utilization of it in Black America,” Leisha McKinley-Beach, an HIV/AIDS consultant of more than 30 years, told Jezebel. Vincent Guilamo-Ramos, dean of Duke University’s School of Nursing and lead author of a 2020 article describing the HIV crisis among Latino people as “invisible,” said, “I think that the path forward is really recognizing that the Latino community increasingly is going to be a larger proportion of the overall U.S. population.” According to the Centers for Disease Control and Prevention, rates of new HIV infections among Black people are eight times as high as they are in white people, while Latinx people experience rates four times higher than whites. Meanwhile, Black and Latinx people are far less likely than white people to be prescribed and stick with PrEP (what those in the biz call “uptake”). According to the CDC, 1.2 million people in America should be on PrEP, a net the agency casts based on demographic and behavioral data. In total, only a quarter of those 1.2 million people were ultimately prescribed PrEP by their doctors in 2020—woefully short of making an impact on new HIV infections, which have fallen slowly in the U.S. over the last 10 years. (Overall new infection rates in the U.S. from 2010 to 2019 declined just 22.5 percent, from 47,500 in 2010 to 36,800 in 2019.) Dig into the numbers further, and you’ll find that 66 percent of white people recommended for PrEP got prescriptions, compared to 16 percent of Latinx people and 9 percent of Black people. The advocates, researchers, and public health experts Jezebel spoke to pointed out many potential explanations—like doctors not effectively putting their nonwhite patients on PrEP—that together have created barriers to HIV prevention, a kind of prophylaxis for prophylaxis.

Longtime HIV/AIDS activist Mark Harrington, who joined ACT UP in 1988 and co-founded Treatment Action Group in 1992, called PrEP “one of the biggest disappointments of the entire AIDS pandemic for me,” during an interview with Jezebel. “Most of the world, including the U.S., has really missed out on an opportunity to make a huge difference in HIV transmission over the last ten years,” he continued. Dázon Dixon Diallo, an AIDS advocate since 1989 and the founder of the Atlanta-based SisterLove, the first women’s HIV/AIDS and reproductive justice organization in the Southeastern U.S., told Jezebel that PrEP’s biggest success is “proof of concept” that HIV can be biomedically prevented. But it is still, Farrow said, a “failure in the grand scheme of things.”

It Is More Than a Gay White Man’s Disease

So what went wrong? On one level, there were philosophical misgivings from the beginning. PrEP’s approval set off debates among queer men regarding ethics and responsible use, as this biomedical intervention threatened the prevailing “condom code” that equated latex with morality. “We had this amazing news: ‘Hey, look, the thing is 99 percent effective,’ and the community’s response is to make it a debate,” said James Krellenstein, founder of the PrEP4All advocacy group (and, full disclosure, a close friend of mine). “It just doesn’t make sense. Why did it take us how many years to call out Larry Kramer for this?” Writer-activist Kramer, who died in 2020, had long been a divisive presence in gay culture, though by the 2010s, his profile was probably more on the revered grande dame side of things than that of a vilified hypocrite. His views expressed in a 2014 New York Times interview summed up the anti-PrEP position’s virtual incoherence: “There’s something to me cowardly about taking Truvada instead of using a condom,” he said. He also claimed that “anybody who voluntarily takes an antiviral every day has got to have rocks in their heads.” Kramer soon changed his position to be (warily) pro-PrEP.

“We had this amazing news: ‘Hey, look, the thing is 99 percent effective,’ and the community’s response is to make it a debate.”

Further convoluting the message, McKinley-Beach said, is that when HIV and AIDS received major cultural coverage, it tended to focus on how the disease affected white people—think Philadelphia, How to Survive a Plague, And the Band Played On, and The Normal Heart. “There are still some people who believe that this is a gay white male’s disease,” she said.

Even before the public debate, though, there were bias issues, as early research benefitted white gay men. Louis Shackelford, external relations project manager at the HIV Vaccine Trials Network (based out of Fred Hutchinson Cancer Center in Seattle), said researchers remain privileged and paternalistic. The importance of studying different groups of men who have sex with men is “not because our bodies are necessarily different,” Shackelford said. Biologically, PrEP works for white, Black, Latinx, and any other cis man equally. “It’s just because we didn’t get a chance to say how to best implement PrEP,” he continued. “PrEP implementation for a white community may just mean putting billboards up and letting people go to the doctor. For a Black community, it may mean going to community centers and doing education in certain ways, or giving presentations to certain community leaders so they can distribute the information to people that they’re connected to.”

But the issues there go beyond outreach. “We often think of Black and brown folks, queer folks, people who have trans experience, as an afterthought in this research and research in general,” University of Maryland professor and HIV researcher Darren Whitfield told Jezebel (Whitfield pointed out the “we” here was the royal one). “We have then tried to course correct by having subsequent studies in specialized populations—essentially studies in underrepresented communities, because we didn’t do our job as scientists in the original clinical trial. We’ve had to go back and do additional studies to say, ‘Does it actually hold up in these groups?’”

Diallo noted that nearly every pre-exposure prophylaxis study done with women has been conducted in sub-Saharan Africa, and that no cisgender women in the U.S. have participated in clinical trials for HIV prevention, despite the elevated HIV risk that Black women in the U.S. face. This research is not important just from a cultural perspective—the CDC says that it takes 21 days for PrEP to reach maximum effectiveness in vaginal sex versus seven days for anal. The second drug to receive FDA approval for PrEP, Descovy, has not yet been approved for women because of the lack of research. This is stated clearly in its TV ads, which has led to confusion, according to McKinley-Beach, who described a call she had with a doctor who told her a patient informed her that “PrEP isn’t for women” after seeing said ad. Diallo estimated that over half of the women SisterLove has treated were not aware of PrEP when they walked through its doors for the first time.

This lack of information would be easier to counter, or would not manifest at all for that matter, if education on PrEP were more robust across the country. In New York, posters have been visible at bus stops and on subways. “But if you’re in Jackson, Mississippi, where there’s no public transit, which has every bit as much of an HIV epidemic as New York City does, that isn’t the most effective way to get a message out,” Farrow said. Harrington noted that the cities whose health departments have run such campaigns, like New York or San Francisco, are “outliers in the national context.”

The Healthcare System Is Clogged With Hurdles to Prevention

Wrapping one’s head around the concept of treating an illness that he or she does not yet have is another potential hurdle. It is estimated that 66 percent of people in the U.S. with HIV are virally suppressed, or taking antiretroviral therapy whose consistent use is life-preserving. It’s easy to understand why the uptake there has been more robust—we are aware as a culture that when you have a disease, you get it treated. PrEP treats the disease before it is contracted, which creates a gray area for potential users. As Craig Pulsipher, associate director of government affairs at AIDS Project Los Angeles, explained to Jezebel, “You’re asking people to take a daily medication to prevent HIV. For many folks it’s challenging to engage with the healthcare system to that level and to continue taking your medication when you don’t have a chronic condition. Someone has to be extremely motivated and have a lot of support in order to be able to do that.”

In some instances, providers have been hesitant to prescribe PrEP to interested patients. One study found that some doctors were less likely to talk about PrEP with Black women out of concerns that they wouldn’t be able to take a daily pill. In late 2021, the CDC updated its guidance to prescribe PrEP to anyone who asks for it. Nonetheless, “we still encounter a lot of providers shaming people who are accessing it,” said Joaquín Carcaño, director of Southern health policy for the Latino Commission on AIDS’s Latinos in the South program. “People are discouraged. They don’t want to go into a place where they’re being told, ‘Well, why don’t you wear a condom?’” Carcaño said that framing things in terms of risk can exacerbate shame and stigma that are themselves barriers to treatment. At SisterLove, Diallo said, they do not speak in terms of risk. “We don’t want people to have to go down a litany of all of the things they do or don’t know about their partners’ behavior, or how many partners they’ve had sex with, or how many times they use condoms,” she said. “What we think inspires women, particularly around thinking differently about HIV prevention or pregnancy or anything else, is somebody actually listening to what their own aspirations and desires are for their best sexual health.”

“We don’t want people to have to go down a litany of all of the things they do or don’t know about their partners’ behavior, or how many partners they’ve had sex with, or how many times they use condoms.”

Clearing mental and care hurdles vaults a potential user smack dab into the middle of our infuriating healthcare system. And because PrEP isn’t a simple one-and-done shot, commitment to navigating that system is required. “When I started PrEP in 2015, I couldn’t get it filled at the local pharmacy down the street,” remembered Farrow. “It took two days for me to understand prior authorization and why I was being forced to go through a specialty pharmacy through the mail, etc. I was 40 years old at the time. A 24-year-old may not have had the same sort of stamina and self-advocacy to be arguing for 48 hours with an insurance company to figure out how to get the medication.”

It was only in July 2021 that the CDC mandated that insurance companies pay full costs for the medicine, appointments, and labs associated with PrEP. The medicine is notoriously expensive—before the FDA approved a new injectable PrEP that is administered every two months last year, Gilead made the only two PrEP drugs available, Truvada and Descovy, and charged astronomical prices for Truvada (it made an estimated $3 billion off Truvada in 2018). And yet, millions of taxpayers’ dollars were used to research PrEP. For the majority of the past 10 years of PrEP’s availability, Krellenstein said the U.S. government “sat back and allowed a company to use that technology, not pay a dime to the American taxpayer, and not ensure that Americans can access a pill.”

Generic Truvada, a reality for PrEP seekers as of 2020, in theory alleviates some of the cost but has not dispelled the notion, cemented over the past decade, that PrEP is prohibitively priced. (Although, a recent error in my own prescription processing in late June estimated my out-of-pocket cost for the generic at $1,898.29, before Duane Reade resolved the issue with my insurance company and I resumed paying nothing.)

“Corporate interests have been put ahead of public health, whether it’s in the failure to expand Medicaid to the states in the South, where the most new HIV infections are happening, to the lack of specific programs to promote uptake in PrEP in the communities most affected by the new HIV infections, which include young gay men of color and young Black women,” said Harrington. (This, despite pioneering research suggesting that Black men who have sex with men do not engage in riskier sexual behavior than their white counterparts.)

Tim Horn of the National Alliance of State and Territorial AIDS Directors pointed out that people who have HIV but not health insurance have a “last resort” in care via the federally funded Ryan White HIV/AIDS Program, which he said a quarter of the people living with HIV in the U.S. use. For easing access to PrEP, however, “We don’t have that program.”

It’s hardly a surprise that already disenfranchised communities are hit hardest. “HIV is like this vacuum that sucks all the intersections to it,” said Diallo. “This virus breaks in and shines a light on the racial divide and inequities, the gender inequities, the sexual inequities, the geographic inequities, the age inequity, the educational inequities, the housing inequities—you name it.”

“Medical mistrust” is often cited as contributing to hesitation in PrEP uptake—as with the infamous Tuskegee Experiment, in which Black men’s syphilis was left untreated and more than 100 subjects died. But there are less publicized elements of the healthcare system that have sowed distrust. “We’re talking about people having experiences with medical providers that have led them to know that it is not necessarily a safe space for them,” said Whitfield. “We’ve placed a burden on people like, ‘Oh, they just need to be educated.’ Well no, actually, what needs to happen is the medical community needs to own up to their shit, and they also need to be better about their bias.”

“what needs to happen is the medical community needs to own up to their shit, and they also need to be better about their bias.”

Carcaño clocks skepticism in the communities he works in. People are “really receptive” to the idea of PrEP itself, but “when they encounter a barrier of just scheduling it, it feels like the system is set up against you,” he said. Latinx people, in particular, deal with the barrier of language. “A lot of these hospital systems have like one, two floating interpreters,” he said. “People, even when they’re trying to get their HIV care, wait all day, even if they had an appointment in the morning, because they’re waiting for an interpreter, which is a disgrace and a disservice to the community.”

“In public health, we spend so much time trying to figure out how to get medicines into people’s bodies—what we really need to be figuring out is how to get people into our medicines,” said Diallo.

A Reason to Be (Cautiously) Hopeful About PrEP’s Future

Despite the glaring shortcomings of PrEP uptake, Diallo, like many of the other advocates I spoke to, is hopeful for the future. She cited potential advances that may make PrEP more accessible to people: longer-acting injectable PrEP, the Dapivirine vaginal ring, and douches or suppositories. People now have the option of “on-demand PrEP”—or “2-1-1,” in which users take two pills before sex, one pill 24 hours after the first dose, and another pill 24 hours after that—which studies have shown to be nearly as effective as daily use, though this method hasn’t been approved by the FDA. Additionally, President Biden’s 2023 budget calls for nearly $10 billion for a 10-year nationwide PrEP delivery program; it is pending Congressional approval.

But while pockets in the U.S. have succeeded in PrEP uptake, what we have is not working. “There has to be an investment in Black leadership and Black-led organizations,” said McKinley-Beach. “These aren’t folks who were coming into a community and testing or researching and trying to figure out if this strategy of this intervention will work. These are folks who already live, work, play, and worship in the communities with this disproportionate impact.” Guilamo-Ramos cited the forming of Duke’s Latino Institute in HIV Leadership, dedicated to outreach among Latinx men, as a step forward. Many people interviewed for this article talked about the possibility of making PrEP even more accessible by allowing pharmacists to prescribe it.

Given the targeting of reproductive rights via the overturning of Roe v. Wade and ominous language in Supreme Court opinions signaling an attack on hard-won LGBTQ rights, others are less optimistic. “We’re facing a really grim period,” said Harrington, “and activists will have their hands full working to preserve our democracy and to restore women’s rights to autonomy over their own bodies.” Currently in Texas court, there’s a pending case seeking to permanently block the Affordable Care Act mandates that require insurance coverage of contraception and PrEP. One of the lawyers representing the plaintiffs is none other than Jonathan Mitchell, whose past cases helped lay the groundwork for overturning Roe.

In terms of proactive behavior for those concerned with PrEP uptake, Farrow suggests discussing PrEP widely (“Ask me about PrEP” in hook-up app profiles can stimulate dialogue), as well as requesting information from local health departments about PrEP to show the need for public-awareness campaigns. McKinley-Beach posts the results of her HIV tests to help destigmatize these conversations. Voting, too, is a way to enact change (pending our ability to resist a complete slide into fascism).

PrEP, nonetheless, remains a crucial tool in fighting the HIV epidemic. “We have a chance,” said Shackelford. “The fact that we’re living in a time where we have interventions that are the stuff of imaginations is something to cherish and to be hopeful about.” But if a tool isn’t in people’s literal hands, how useful is it anyway?

Correction: A previous version of this post misstated Louis Shackelford’s professional affiliation and title. The text has been amended to reflect his current position.