PrEP is one of the most powerful tools available to prevent HIV — offering near-perfect protection when taken as prescribed. Yet for many Black LGBTQ+ people, getting access to the medication is far harder than it should be.
Although PrEP — short for preexposure prophylaxis — is 99 percent effective at preventing sexual transmission of the virus that causes AIDS when taken as prescribed, patients often face steep barriers to accessing it. From medical stigma and insurance denials to doctors unfamiliar with the regimen, a new report finds that many LGBTQ+ people have had negative experiences while trying to protect themselves from HIV.
Medical Stigma Keeps Patients Away From Care
Dr. Beth Oller, a board member of GLMA, a nationwide organization of LGBTQ+ and allied health care professionals focused on health equity, has seen the consequences firsthand in her Kansas medical practice.
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“I have a lot of patients who had not done preventive care for years because of the medical stigma,” Oller told KFF Health News, a program of the nonprofit KFF.
When Patients Know More Than Their Doctors
Those systemic challenges are reflected in the experience of Matthew Hurley, who lives in the San Francisco Bay Area — a region with one of the nation’s highest concentrations of LGBTQ+ residents.
After having sex with someone who later tested positive for HIV, Hurley began taking PrEP. But when a change in insurance forced him to switch doctors, he encountered an unexpected problem: his new physician knew less about PrEP than he did.
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“When I brought up PrEP to him, he said, ‘What’s that?’” Hurley told KFF Health News. “And I was like, oh boy.”
Hurley explained that he took a daily pill and underwent quarterly lab work to monitor for breakthrough infections or other health issues. After conducting his own research, the physician agreed to prescribe PrEP.
RELATED: Ending HIV Stigma: PrEP screening for all
Insurance Coverage Doesn’t Always Mean No Bills
That interaction, however, was only the first in a series of hurdles Hurley would have to overcome.
Although most private insurance plans and Medicaid expansion programs are required under the Affordable Care Act to cover PrEP and related services — including lab tests — with no cost sharing, Hurley spent months contesting charges and past-due notices.
Eventually, he found a provider who was better informed about PrEP, and he hasn’t received an unexpected bill since. Still, the experience left him frustrated by the fragmented nature of his care.
“I have multiple organizations that I have to deal with to get my holistic health dealt with,” Hurley said. “I wish I didn’t have to separate my sexual health care from my primary care.”
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How to Protect Yourself — and Avoid Common Barriers
To help patients avoid some of the obstacles Hurley faced, KFF offers several recommendations:
Find out if PrEP is right for you. Under guidelines from the U.S. Centers for Disease Control and Prevention (CDC), PrEP can be prescribed to anyone who is sexually active. The CDC particularly recommends it for people who don’t use condoms consistently, people who inject drugs and share needles, men who have sex with men, and people whose partners are living with HIV or whose HIV status is unclear.
Don’t assume your provider knows about PrEP. Check your state or local health department for a how-to guide you can share with your provider. The CDC also has PrEP guidelines, though some HIV/AIDS resources have been removed from federal websites.
Go in-network for labs. To avoid unexpected bills, ask your doctor’s office to code required lab work carefully and to send you to an in-network lab. If mistakes occur, share the PrEP billing and coding guide from NASTAD, a nonprofit association representing public health officials who oversee HIV and hepatitis programs.
Seek savings. Truvada, the first approved PrEP drug, now has several lower-cost generic versions. Ask your doctor to prescribe medications your insurance will cover. Some drugmakers also offer assistance programs for qualifying patients.
Consider telehealth and seek out affirming care. Roughly 20 percent of patients on PrEP used telemedicine in 2024. Online pharmacies such as Mistr and Q Care Plus offer PrEP without an in-person appointment, and lab work can be completed at home. The LGBTQ+ Healthcare Directory is a searchable nationwide database of providers who identify as queer-friendly.
