HIV Prevention Is Nearly 100% Effective, So Why Is Getting PrEP Still So Difficult?

Cody Henry had been taking HIV prevention medication for years when he realized the daily pill no longer fit his lifestyle.

His sex life had changed, and after switching to an on-demand dosing schedule tied to sexual encounters, the 28-year-old said, he occasionally put himself at risk by taking a dose at the last minute or forgetting to take it altogether.

“I wanted to have consistent coverage,” said Henry, a public health worker who identifies as queer. “I didn’t want to rely on something that was ad hoc.”

The Decatur resident sought out a simpler option but discovered his insurance covered the generic form of the Truvada pill, not Apretude, the injectable form he preferred, which has a list price of more than $4,000 every two months.

When Henry lost his insurance coverage after being laid off late last year, he became eligible for a patient assistance program that allowed him to get the bimonthly injections with no out-of-pocket cost. Now that he has recently regained insurance, he isn’t sure whether his preferred medication will remain within reach.

PrEP, short for pre-exposure prophylaxis, can reduce the risk of acquiring HIV through sex by about 99% when taken as prescribed.

Yet while PrEP is covered by most insurance and available through clinics and nonprofit organizations, Black gay men and transmasculine people in Atlanta face barriers to getting and staying on the form that works best for them.

The stakes are particularly high for Black men who have sex with men. Black Georgians made up 32% of Georgia’s population in 2024 but accounted for 63% of new HIV diagnoses, according to the Georgia Department of Public Health. Among those diagnoses, more than half were attributed to male-to-male sexual contact.

“If people have to jump through hoops to access that prevention, they’re … less likely to do it,” said Derek Baugh, programs director at Game Changing Men, a Newnan-based advocacy group serving cis and trans Black men. “And in that time of them dragging their feet, they’re more and more vulnerable.”

Accessing PrEP

Tony Huey has been considering PrEP for years. As a bartender at the once popular LGBTQ bar Joe’s on Juniper, he regularly had conversations with patrons about the pills, but feared possible side effects. Those concerns eventually faded, but the 35-year-old Decatur resident, who identifies as gay, still put off getting the medication. He said his primary care provider has never suggested it.

“Doctors rush you in, they rush you out, they don’t really talk to you, [and] they’re not very personable, from my experience,” Huey said. He added that he doesn’t feel fully comfortable in traditional healthcare settings. 

“If my doctor would have brought it up, I probably would have gotten on it,” he said.

Even when patients do request PrEP, getting it can require extra legwork. 

Michael Chancley is a social worker and communications and mobilization manager with PrEP4All. He said he’s had to educate doctors on PrEP.

“I’ve had primary care providers who are like, ‘Well, I’d rather refer you to infectious disease or a specialty clinic,’” said Chancley, a gay man who has been on PrEP for more than a decade. “And it’s like, Why? You can just get the labs right here and write the prescription. … Even as somebody who has insurance, I run into those challenges.”

For Quentin Bell, 38, the problem has sometimes been whether providers understand his needs as a trans man. The Riverdale native, now living in Mobile, Alabama, said he has felt “othered” when he has had to explain to doctors the distinction between his gender identity and his sexuality.

“As a transmasculine person, you just never really feel like somebody understands where you’re coming from,” said Bell, who identifies as pansexual. “It’s already tough enough trying to find providers who are culturally competent … [then] explain to people that you’re not a straight-identified man and having to explain why you might even need PrEP, as if anatomy and physiology isn’t something you learn in high school.”

That lack of familiarity with PrEP can extend beyond the exam room. Henry said he believes the preventive medication is normalized in the local Black queer community, but misconceptions about who needs it persist.

“An individual will have the thinking pattern … ‘I’m not out there like that. I’m not in these streets, so I don’t need to get on PrEP,’” he said. “That narrative does exist. I guess on the flip side, that means other people who are on PrEP are these salacious people who are sleeping around.”

Brandi Pinckney-Greene, a board-certified family nurse practitioner, said privacy concerns can also keep younger people from seeking PrEP.

“When we’re at Morehouse, Spelman, Clark Atlanta, Clayton State, we have to be very mindful of those students who are on their parents’ insurance,” said Pinckney-Greene, who also serves as director of clinical services at Carl Bean Men’s Health and Wellness Center. “How does that look when the parent is getting an alert from the insurance company that their child had testing done and possibly may be on PrEP?”

For some transmasculine people, Bell said, stigma around sexuality and gender can add another obstacle.

“Internalized homophobia and transphobia is a real thing, and it creates a barrier,” said Bell, an HVAC specialist who co-founded the Knights and Orchids Society with his wife. “There’s a lot of shame around openly identifying [as gay], and then shame around wanting to get on medication and having to explain to your people why you’re getting on that medication. And that, in turn, keeps them from accessing the healthcare that they really need.”

Even for people who are willing to seek care, where they live can determine how far they have to go to get it. A 2024 study of the Atlanta metropolitan area found that more than 84% of the region’s 130 PrEP sites were located north of Interstate 20, which has historically marked a divide between predominantly Black communities to the south and predominantly white communities to the north. Four counties south of the interstate accounted for 14% of new HIV diagnoses but fewer than 5% of PrEP locations.

Chancley, who lives on Atlanta’s southside, knows that disparity firsthand. He said he has to travel to Midtown or Buckhead to reach the closest clinic where he can get PrEP. For those who don’t want to make that trip, he said the health department may be an option, though he describes that care as stigmatizing and impersonal.

Even when clinics are available nearby, other circumstances can make PrEP care complicated. Mariah Moore, program director at Transgender Law Center, said economic and housing instability can create another barrier, especially for people who face disparities due to their gender identity. 

“If you don’t have access to safe, stable housing, if you don’t have steady employment, which lots of trans people don’t … it’s nearly impossible to stay in care,” she said.

Threats and opportunities to expand PrEP access

Rx for Change is working to fill access gaps. The nationwide initiative — a collaboration between Emory University’s Rollins School of Public Health, AIDS United, the Black Public Health Academy, and the National Pharmaceutical Association — is partnering with pharmacies to create another access point for HIV prevention, particularly in communities where traditional clinics are harder to reach. Georgia and Louisiana are the first states participating in the pilot program.

The project launched as Georgia prepared to expand pharmacists’ role in HIV prevention. In May, Gov. Brian Kemp signed legislation allowing pharmacists to dispense and administer PrEP and PEP (post-exposure prophylaxis) beginning in July.

Natalie Crawford, an associate professor at Emory, said Rx for Change is training local pharmacists on how to deliver non-stigmatizing HIV prevention services. In addition to increasing geographic access, she said, the initiative can minimize the possible discomfort of entering a sexual health facility.

“This is the beauty of pharmacies: It’s disease-agnostic,” said Crawford, adding that their long hours are also a boon. “No one knows whether you’re going in to buy a bag of chips or get blood pressure medication or just grab some Tylenol.”

Still, the initiative would not address affordability for uninsured people, who may soon face another obstacle due to a federal funding cut.

An HIV prevention program for community-based organizations funded by Centers for Disease Control and Prevention is ending after Sept. 30. That will potentially impact local organizations that help people access prevention services, including AID Atlanta and National AIDS Education & Services for Minorities (NAESM).

A Centers for Disease Control and Prevention CDC-funded HIV prevention program for community-based organizations is ending after Sept. 30, potentially impacting local organizations that help people access prevention services, including AID Atlanta and National AIDS Education & Services for Minorities (NAESM).

Jeremiah Johnson, executive director of PrEP4All and co-founder of the Save HIV Funding campaign, said in a statement: “If this critical funding stream is discontinued or altered beyond recognition, many local service organizations will have to shut down or lay off staff in areas where resources are already strained.”

For now, Henry is optimistic about PrEP availability, even if getting the form that works best for him isn’t always convenient.

“There are barriers, but it is accessible,” Henry said. “You might have to work to get it, and that’s why there are PrEP navigators who help people navigate through the messy web of PrEP. But it’s there. It’s literally just waiting.”