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

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.