We Need to Make it Easier to Get—and Stay—on PrEP
When taken as prescribed, pre-exposure prophylaxis (PrEP) can decrease risk of HIV infection through sex by up to 99%. So why aren’t more individuals who could benefit from the medication taking it?
It’s been over a decade since the FDA approved the first Pre-Exposure Prophylaxis (PrEP) medication for HIV prevention in 2012. Now available in the U.S. as a daily pill or every-two-months injection, the antiretroviral treatment reduces the risk of getting HIV from sex by about 99%, by preventing the HIV virus from replicating and actually causing an infection.
The CDC recommends PrEP for those at high risk for HIV, including men who have sex with men, injection drug users, and heterosexual individuals who have high-risk exposure.
“It’s highly powerful, and we have long-term information about the safety and use of the medication,” says Keri Althoff, PhD '08, MPH '05, an associate professor of Epidemiology.
But a highly effective medication can’t do much if the individuals who would benefit from it can’t easily access it. In 2020, fewer than 25% of the 1.2 million people who could benefit from PrEP received prescriptions, up from 3% in 2015.
Lack of PrEP Awareness
As a young gay man in college, Brett Wargo knew that just using condoms wasn’t enough to protect him against HIV. Wargo was a sophomore in 2014 when he first heard about PrEP, but he didn’t know much about what it was, how it worked, or how to get it.
“The only place I knew I could get it was Planned Parenthood,” Wargo says. “But my limited knowledge of what the clinic did prevented me from going because I always saw it as a women's service clinic.” It wasn’t until Northwell Health’s youth and adolescent HIV prevention and treatment program visited his college campus for an outreach event that he got the information he needed. He admits that if that organization hadn't come to him, he probably wouldn’t have felt comfortable reaching out.
Wargo’s story inspired this Bloomberg School PSA (also available in Spanish)
The first barrier to getting on PrEP is “knowledge that this is out there and could be a part of an individual’s prevention toolkit to reduce their risk of acquiring HIV," says Althoff. And people don’t always know that they could benefit from PrEP.
“We always talk about, ‘know your [HIV] status,’” says Althoff. “Knowing if you're high risk is just as important.” To do that, people need to understand the factors that can increase HIV risk, what can reduce risk, and how various prevention tactics—including PrEP—can help mitigate transmission through sex.
Health Care Deserts—and Bias
“Queer people don't necessarily have the closest relationship with health care,” Wargo says.
Some providers may be unfamiliar with prescribing PrEP or hold biases against the LGBTQ+ community, resulting in inadequate information or even refusal to prescribe the medication. This lack of awareness and stigma can make it harder for individuals to seek and receive the care they need.
Geographic location and health care deserts also limit access to PrEP. In certain regions, particularly rural areas, specialized health care services and knowledgeable providers may be scarce, making it challenging for LGBTQ+ individuals to find suitable care or receive prescriptions for PrEP.
HIV.gov is one tool Althoff recommends for finding a local provider who can prescribe PrEP, or for locating other services, like STI testing and treatment. For those who don’t feel comfortable visiting a clinician in person, telehealth can also be an effective way of connecting with a prescriber.
Wargo considers himself lucky to have had supportive partners and friends, good health insurance, and compassionate health care providers along the way. But this isn’t the case for everyone, and he encourages people to not give up if they don’t find a good health care provider right away.
The Cost of Prevention
PrEP is covered by most insurance plans and state Medicaid programs, but not everyone has comprehensive coverage or affordable health care. This financial burden disproportionately affects marginalized communities, including LGBTQ+ individuals who may face additional economic disparities.
Federal and state PrEP assistance programs can help reduce the cost of PrEP medications or injections for people who qualify. Ready, Set, Prep aims to support people at the highest risk for HIV by providing PrEP medication at no cost.
The CDC’s Paying for PrEP site can help people find ways to get PrEP paid for, says Althoff, and state-level health departments can help individuals understand localized resources.
Prescription Challenges of a Daily Pill
Even when people get a prescription for PrEP, there’s no guarantee they will fill it. Social epidemiologist Lorraine Dean, ScD, co-led a study of “PrEP reversals,” or people who delay or don’t fill their PrEP prescription, leading the pharmacy to reverse the insurance claim for it. Her team’s analysis of pharmacy claims between 2015 and 2019 found that nearly one in five people with a new PrEP prescription delayed or never filled it. A year after receiving their PrEP prescription, about 75% of this group still had not picked up their medication, and 6% were diagnosed with HIV.
“Among the people who weren’t picking up, there was about a three times higher risk of HIV,” says Dean. “This is HIV risk that is avoidable … if we can get people to at least show up and get that initial prescription.”
But that’s not always easy for everyone. "Some people face higher barriers to routinely picking up a prescription and taking a medication,” Althoff explains.The first barrier to getting on PrEP is "knowledge that this is out there and could be a part of an individual’s prevention toolkit to reduce their risk of acquiring HIV."
Wargo also emphasizes the importance of ongoing support from providers in maintaining consistent PrEP usage. "Having someone who can follow up with you and make sure you're on track can make a huge difference,” he says.
Making PrEP Accessible
To combat the lack of guidance and resources, as well as the stigma he and others in the LGBTQ+ community have faced, Wargo has gone on to work at clinics that provide PrEP and focus on adolescent HIV prevention among underserved populations.
Wargo is now an MPH student at George Washington University with a concentration in Community Oriented Primary Care. His personal and work experiences have given him insight into the continued inequities within the LGBTQ+ community, as well as the gaps in education and resources, and the overall need for comprehensive support systems for this community.
Althoff compares the complicated process of getting on and staying on PrEP to the accessibility of another STI prevention tool: “Many health departments have free condoms available in their waiting room, which lowers the barriers for folks who choose that prevention tool," she says. “Prevention tools are most effective when the people who choose them are able to access the tools with very low barriers.”
Grace Fernandez is a communications associate in the Office of External Affairs at the Johns Hopkins Bloomberg School of Public Health.
Aliza Rosen is a digital content strategist in the Office of External Affairs at the Johns Hopkins Bloomberg School of Public Health.
