Brenton Williams finally felt he had the proper health insurance to ask his doctor about PrEP (Pre-Exposure Prophylaxis), a highly protective drug regimen for people at risk of HIV. Williams’ fiancée is HIV positive, which should have made him the perfect candidate for PrEP, which prevents HIV transmission in the event of exposure to the virus. “I just really wanted this extra layer of protection,” he said. 

His doctor wasn’t so sure. 

“Well, what do you need it for?” she probed, before offering to “look into it.” Williams sensed that she was trying to change the subject.

“I don’t understand what the hold up is,” Williams told me two months after his initial appointment requesting the medication. As far as he could tell, his doctor seemed unclear about best practices for prescribing PrE, telling Williams that she needed to learn more about it herself. Williams had completed all of the necessary lab work along with a full physical, but he still hadn’t gotten access to the drug. “I definitely want to continue to have sex, but I also want to keep my body safe,” he told me.

In theory, it has become miraculously easy to avoid getting HIV in the United States today.

For people who are HIV negative, a once-daily PrEP pill can prevent infection during sex with someone who is HIV positive no less than 99 percent of the time. At the same time, most of the 1.2 million Americans living with HIV follow an anti-retroviral therapy regimen that is so effective that it can make their HIV non-transmissible. These treatments are both a marvel of modern medicine and a living tribute to the more than 700,000 Americans who have lost their lives to HIV since the first reported cases appeared in 1981.

Getting on PrEP, which was approved by the FDA in 2012, should be about as easy as getting on birth control, another daily pill prescribed for sexual health. In both cases, side effects are minimal and rare, and the costs are covered by most insurance plans. 

But despite all that, PrEP remains exasperatingly out of reach for hundreds of thousands of people in the US who need it. Most Americans — about 60 percent — don’t know about PrEP in the first place. Even if they do know enough — and have the health coverage they need — to ask a doctor about it, less than half of physicians feel knowledgeable enough to prescribe PrEP, as Williams found. And other people still often struggle with stigma from their communities and even from their health care providers.

As a result, only about one-third of people at risk of HIV in the US currently take PrEP. Worse yet, those who are the most likely to benefit from its protection are often the least likely to be on the medication. Among people at risk of HIV, Black and Latino bisexual and gay men, women, and Southerners consistently take PrEP at much lower levels than the rest of the population, which may account for the troubling increase in new HIV infections over the past decade in some areas in the US.

“We’ve had a dramatic drop in new infections over the past 15 years, but we’ve plateaued, and we’ve plateaued among those same vulnerable populations,” said Carl Baloney Jr., president of AIDSUnited. People like Brenton Williams can do everything right, he said, and yet, they still get lost in the cracks of this country’s warped health system, either because they lack health insurance, or because their providers don’t know about PrEP well enough to prescribe it.  

The gaps in PrEP coverage may soon get even wider, because the Trump administration has slashed hundreds of millions of dollars in grants earmarked for PrEP outreach and HIV prevention. It is a maddening time to be an HIV advocate in the United States. After decades of getting to the point where an America free of HIV seemed in sight, the country feels on the verge of a tragic reversal. And the availability of PrEP is one of the most important factors in deciding what comes next. 

“This is a disease that, with some strong policy support and political will, we could end in this country very quickly,” Baloney Jr. said. “There’s really no excuse for there to be new infections at any measurable rate in the United States of America.”

“An awful lot of work for a disease you don’t have”

Ironically, some of the challenges facing PrEP come from the incredible success of battling HIV. Almost everyone under the age of 35 is too young to remember a time before antiretrovirals, when HIV was a death sentence. 

“The scope and the awareness of HIV really changed once more people were living with HIV than dying of HIV,” Danielle Houston, executive director of the Southern AIDS Coalition, said. That is a massive achievement, she said, but one that has also “cloaked the actual epidemic” from public view.

“The scope and the awareness of HIV really changed once more people were living with HIV than dying of HIV.”

Danielle Houston, southern aids coalition

And though HIV has become much, much more treatable, it is still a widespread disease, more so in some communities than in others. In Washington, DC, for instance, nearly one in 50 residents has HIV, among the highest rates in the country. Even with strict treatment regimens — which can cost upwards of $1 million over a patient’s lifetime — people living with HIV suffer from higher risks of heart disease and other comorbidities. 

But the burden is not distributed equally, meaning that, in some communities, the actual HIV rate is much higher. At current rates, 1 in 15 white gay and bisexual men nationally will be diagnosed with HIV in their lifetime. For Black gay and bisexual men, the likelihood rises to a startling 1 in 3. For Latino gay and bisexual men, it is 1 in 4. In DC, for example, the rate of HIV is starkly segregated, with new infections highly concentrated in the city’s predominantly Black neighborhoods. 

And while more and more people are taking PrEP each year, progress on reducing HIV rates overall has largely stalled and has even reversed in some communities — a trend that’s tightly linked to PrEP usage rates. States with high levels of PrEP coverage, like New York and Vermont, saw a 38 percent decrease in new HIV diagnoses between 2012 and 2022, while those with low PrEP coverage , like West Virginia and Wyoming, saw a 27 percent increase, according to a report by AIDSVu. 

Black Americans are by far the most likely to be impacted by HIV in this country, facing new infection rates at much higher levels today than have ever been reliably recorded among white Americans. In recent years, Latinos have faced an alarming increase in new infections, with rates rising nearly 20 percent between 2018 and 2022.

And both communities of color and women take PrEP at low rates, relative to their risk of HIV. Black people account for nearly 40 percent of all new HIV diagnoses but make up only 16 percent of PrEP users, the majority of whom are white. One in five HIV infections occur in women, but they account for only one in 10 PrEP users. 

Some of that may be due to the dangerously false perceptions that women rarely get HIV and are therefore less likely to benefit from preventative services. Marnina Miller, Williams’ fiancée and co-executive director of the Positive Women’s Network, a group advocating for people living with HIV, first tested positive for the virus in 2013, a time when PrEP existed but was poorly understood — stigmatized as a “party drug” on the grounds that it supposedly encouraged promiscuity and barely on the radar of most women. Even now, “women are continuously an afterthought in the HIV epidemic,” she said.

Black and Latino communities also have less access to PrEP as an extension of much broader, deeply entrenched healthcare disparities. “It’s not that women, Black, Hispanic, or Latinx individuals, or Southern individuals are being less responsible about their sexual health,” said Houston. “They’re more vulnerable to healthcare systems and policy changes” that put treatment and preventative services like PrEP out of reach.

Insurance to cover the medication — which can cost up to $2,000 per month out of pocket — is one barrier for many people. While there are options to get help paying for PrEP if people don’t have insurance, like state-level PrEP programs or patient assistance programs offered by the drug manufacturers themselves, there’s no preventative equivalent to the federally funded Ryan White HIV/AIDS Program, which supports people living with HIV who are uninsured or otherwise can’t afford treatment. 

Individuals also have to jump through hoops to make sure that not just the medication but also all of the other costs associated with PrEP — “the HIV testing, the labs, the doctors visits” — are covered, said Jeremiah Johnson, executive director of the advocacy group PrEP4All. 

And then, even if they do get a prescription, most Americans take PrEP in the form of a once-a-day-pill, with requirements to check in with their doctor every 3 months to renew their prescription. Not coincidentally, somewhere between 37 and 62 percent stop taking PrEP within six months of starting. 

“The thing that we’ve heard repeatedly from PrEP users,” Johnson told me, “is that that’s an awful lot of work for a disease that you don’t have.”

How to get more people on PrEP

Navigating the PrEP landscape can be daunting in other ways, too, with critical information often arriving to people late, if it arrives at all. Only one of the two FDA-approved PrEP pills — Truvada — is legally approved for people assigned female at birth. Williams, who is a trans man, was unaware of this until I mentioned it during our call. “I had no clue,” he said. “This is the first time I’m hearing this, but it’s the kind of thing my doctor should have said to me.”

This pattern of unawareness about potentially life-changing treatments came up frequently in my conversations with advocates. 

“Hearing about PrEP and what it could do to keep me HIV negative was transformative,” said Baloney Jr., of AIDSUnited, of when he learned about the pill a decade ago. As a Black gay man, he said, “the first question I had was: How am I just hearing about this now?” 

The good news is, more people are hearing about PrEP now. Between 2023 and 2024, PrEP use increased by about 17 percent. A huge part of that increase was the explosive growth in access via telemedicine driven mostly by MISTR, a telehealth platform — and its femme spinoff, SISTR — which now provides about one in five PrEP prescriptions in the United States, according to a study by researchers at Emory University’s Rollins School of Public Health. 

Tristan Schukraft, an entrepreneur and self-professed “CEO of everything gay” who owns a luxury boutique hotel chain and a popular gay bar in West Hollywood, founded MISTR in 2018, because “a lot of my friends were having challenges getting on PrEP,” he told me. “I realized that there has got to be a better way.”

While some might assume that telehealth platforms skew towards “white men or people with means,” said Schukraft, almost half of MISTR’s users are people of color, higher than the average PrEP ratio, according to the Emory University study. More than three-quarters of the platform’s customers have never used PrEP before, and one-third are uninsured. (MISTR also helps uninsured patients navigate options for covering the cost.)

Getting on PrEP is hard if it’s not available at “places where people are already at, whether that’s through telemedicine or a brick-and-mortar location that’s truly accessible to them,” said Johnson of PreP4All. He credited MISTR and initiatives like Iowa’s state TelePrEP program with actively “transforming PrEP access for people.”

Many people still benefit from community-based outreach too.

Take Gail Prince, a grandmother who found out in 2024 that her partner of 30 years had knowingly infected her with an STI that he had been secretly taking medicine to treat. Almost immediately, “I went down to the court building and filed the divorce papers,” she said. “I was like, ‘No one else is going to protect me as I could.’”

Prince went to get tested for HIV at the Women’s Collective, a clinic in DC that specializes in HIV-related services for women of color. She was negative. But after her husband’s betrayal, “I felt like I was nothing, dirty,” she said. “I didn’t take care of myself.” She stopped getting her hair done. But not for too long.

“I knew that I had to actually think about myself in order to be here to see my grandkids graduate from high school and college,” said Prince, who has since gotten back on the dating scene, now protected by PrEP, which she learned about at the Women’s Collective. “It makes me feel better, because I know I’m coming first. I’m not waiting for a man who might not tell you anything.”

She gets her PrEP through Women’s Collective and also uses their food pantry and participates in some of their social groups, like their weekly “Coffee House” chats, further connecting her to the organization and its supports.

“Organizations like ours know that it’s not just about HIV,” Valerie Rochester, executive director of the Women’s Collective, said. “It’s about everything that is involved in a person’s life” that “could potentially prevent them from seeking medical care,” like housing insecurity, a lack of social support, or substance misuse. “We’re always looking to expand any ways that we can find to engage a client and keep them coming back.”

Prince is one of the small fraction of people on PrEP in the United States who get the medication through a shot every two months instead of a once daily pill. She started off on the pill Truvada, but like about half of PrEP users, “it wasn’t really working for me,” she said. “I was forgetting to take it.” So when the Women’s Collective introduced her to Apretude, which is a once-every-two-month shot rather than a daily pill, she jumped at the chance.  

Such injectable forms of PrEP — including the recently-approved Lenacapavir, which requires jabs only once every six months — have the potential to radically increase the number of people protected from HIV. Over 80 percent of people who go the injectables route are still on PrEP six months after they begin treatment, compared with about half who take the daily pill. 

PrEP injections do have to be given in a clinic, which has led MISTR to set up – though not yet open – seven brick-and-mortar locations located in “gayborhoods” across the country. Patients will be able to visit them to get their biannual long-acting PrEP injections, which Schukraft called a “game-changer” — as long as people can afford it. MISTR is holding off on actually opening shop at those locations until more insurance companies begin covering the shots, which can otherwise cost almost $30,000 per patient per year. 

Many states also now allow pharmacists, rather than just doctors, to prescribe PrEP. And as injectables go mainstream, advocates are working to try to ensure more pharmacies are authorized to administer them. 

A country without HIV is now within reach — but at risk

One day, getting on PrEP may be just as accessible, destigmatized, and routine as getting on birth control or obtaining other sexual health treatments. “Say you go and grab your Plan B; there’s PrEP right next to it,” said Miller, of the Positive Women’s Network, who hopes to see a world where “prevention will be an everyday occurrence.”

“We actually have the tools. We know how to eliminate HIV, and so, we can still turn this around.”

Vincent Guilamo-Ramos, Institute for Policy Studies at the Johns Hopkins School of Nursing

The country is not there yet, but it has been getting closer. Or,l at least, it was before the Trump administration began gutting the Centers for Disease Control’s HIV prevention and treatment programs and defunding local clinics doing PrEP outreach work last year. While even red states have been shamed into maintaining funds for HIV treatment in the wake of the Trump cuts, prevention programs remain threatened at a time when PrEP could be more accessible than ever. 

In 2024, the Biden administration appointed Miller as a member of the Presidential Advisory Council on HIV/AIDS, which has been around since 1995. But Trump — who pledged to end the HIV epidemic in the US by 2030 during his State of the Union address in 2019  — dismissed the council last year alongside the entire staff of the Office of Infectious Diseases and HIV Policy. 

Vincent Guilamo-Ramos, director of the Institute for Policy Studies at the Johns Hopkins School of Nursing, is especially concerned about the impact of the Trump administration on Latino communities, who were already experiencing a largely hidden surge in HIV diagnoses in recent years.

The Trump administration’s anti-immigrant rhetoric has likely made a growing problem even worse, he said. There’s been “a chilling effect for the entire Latino community” when it comes to seeking medical care or even gathering in public, and that has extended to HIV prevention efforts. A few months ago, Guilamo-Ramos accompanied a mobile clinic that parked outside of a popular gay Latino nightclub to offer testing and treatment in downtown LA. Normally, he says, such “bilingual and bicultural” community outreach is the gold standard for getting more people on PrEP.

But, this time, he said, the club was empty. “I said, ‘Where is everybody? It’s Friday night. People should be out,’” said Guilamo-Ramos. A clinic worker told him that people were “afraid to come” because of concerns about immigration raids.

It’s been harder to continue to engage, to reach people through grassroots community efforts, he said, “which is really the way to get to people who may have less experience with the health care system.”

But like many other health care workers who’ve fought to eradicate HIV, Guilamo-Ramos has seen enough to know that this is not the time to give up. In the early 1990s, his job was essentially palliative care for HIV-positive patients, helping “people to make meaning out of whatever time they were fortunate to have left,” he said. “That has changed dramatically.”

“Despite all these barriers,” the fears, and the funding cuts, “the thing that is most hopeful, which keeps me going, is that we actually have the tools,” he said. “We know how to eliminate HIV, and so, we can still turn this around.”

For his part, Williams is still fighting to get on PrEP. He plans to take off work for his birthday this month and visit his doctor to advocate for a prescription once and for all. If that doesn’t work, he’ll turn to another clinic, he says — one that specializes in serving people like him.

The stakes are simply too high, and he has put too much time and effort into this already to give up. But it should never have been this hard. “I still have to advocate every time I communicate with them” about PrEP, he told me, which is outlandish, “because this is something they themselves should be pushing” more people to take. 

“I’m trying to be patient,” he said, but lately, that patience has been wearing thin.

Source: Vox.