Advice for getting PrEP, the HIV prevention drug : NPR

When a librarian in Berkeley, California, considered taking PrEP to prevent HIV, the doctor had never heard of the drug, and the bills were expensive… and wrong. The process was so frustrating that at one point they wondered, “Am I just going to stop taking my medications so I can stop dealing with these coding issues and these scary bills?”
— Matthew Hurley, 30, from Berkeley, California.

A couple of years ago, Matthew Hurley received a message that people dread. It said, “When was the last time you were tested for an STD?”

Someone Hurley recently had unprotected sex with has just tested positive for HIV.

Hurley, who uses they/them pronouns, went to the clinic and got tested. “Luckily I didn’t contract HIV, but it was a wake-up call,” they said.

This experience led Hurley to seek out PrEP, short for pre-exposure prophylaxis. Antiretroviral drugs significantly reduce the chance of becoming infected with HIV, the virus that causes AIDS. Therapy 99% effective in protecting people from sexual transmission if taken as prescribed.

Hurley started taking PrEP and everything was fine for the first nine months until their health insurance changed and they started seeing a new doctor: “When I brought him PrEP, he said, 'What is it?' And I thought, “Oh my God.”

Hurley, a librarian, went into teaching mode. They explained that the PrEP regimen they were taking required daily pills and laboratory tests every three months to detect breakthrough infections or other health problems.

Hurley was surprised that they knew more about PrEP than the doctor. The FDA approved the first drug, Truvada. back in 2012and Hurley lives in the San Francisco Bay area, a place with one of highest concentrations LGBTQ+ people in the country and deep history HIV and health activism.

Hurley said older friends and acquaintances who lived through the AIDS epidemic shared the horror of living at a time when there were no effective treatments or medications for prevention. The decision to take PrEP was perceived as a way to protect one's health and one's community.

So Hurley pushed the doctor, and after the doctor did his own research, he agreed to prescribe PrEP.

Hurley got the help they needed, but they had to be the expert in the exam room.

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“It’s a big burden,” said Beth Oller, a family medicine physician and board member of GLMA, a national organization of LGBTQ+ and allied health professionals focused on health equity. “You really need someone you can just come to and talk to. [to] about your health issues without feeling like you have to educate and advocate for yourself at every turn.”

Oller said many strange people have experienced this. negative experience during visits to the doctor. “I have many patients who have not sought preventative care for years because of medical stigma,” she said.

Billing

Removing barriers to access to HIV prevention medications was just the beginning. Hurley began receiving a number of bills for PrEP-related treatments: Blood work: $271.80. Office visit: $263.
Once again, Hurley was surprised. They knew (even if the clearinghouse did not) that under Affordable Care Actmost private insurance plans and Medicaid expansion programs required for coverage PrEP and support services, like laboratory testsas a preventative measure without cost sharing.

Bills for doctor visits and blood tests were piling up.

Hurley appealed the bill and was rejected almost every time. Then they will appeal again.

Hurley shared a series of appeal letters for one service in which the billing service acknowledged that a blood test was initially incorrectly coded as diagnostic. Once it was fixed, the insurance company paid for the service, Hurley said.

It may seem like a quick or easy solution, but Hurley said it took “forever” to go through the process. Over the course of several months, they considered at least six incorrect bills. Hurley estimates they spent more than 60 hours arguing the bills.

During this time, Hurley said, the billing department “keeps sending me emails and invoices that say: You are overdue. You are overdue. You are overdue.“

Tired of the hassle, Hurley decided to find a health care provider (and billing office) more knowledgeable about PrEP. They settled on the AIDS Healthcare Foundation. The care team was able to discuss the pros and cons of different PrEP regimens and knew how to navigate Hurley's insurance form.

Since then, Hurley has not received any unexpected bills.

But excluding sexual health and PrEP services from primary care was not ideal.

“I have several organizations that I have to deal with to solve my health problem,” Hurley said.

A provider does not have to be an HIV specialist, infectious disease specialist, or doctor to prescribe PrEP. The Centers for Disease Control and Prevention encourages primary care providers to treat PrEP as other prophylactic drugs.

To avoid the headache Hurley faced, try these tips:

1. Do your homework to find out if PrEP is right for you.

CDC estimates 2.2 million Americans could benefit from HIV prevention medications, but just over a quarter of this group were prescribed them.

“Not enough people know about PrEP, and there are a number of people who know about PrEP but don't realize it's for them,” said Jeremiah Johnson, executive director of PrEP4All, an organization dedicated to universal access to HIV prevention and medications.

According to clinical guidelines from the Centers for Disease Control and Prevention (CDC), PrEP may be prescribed as part of a preventive health plan to help anyone who is sexually active. This is especially recommended for people who do not consistently use condoms, intravenous drug users who share needles, men who have sex with men, and people in relationships with partners living with HIV or whose HIV status is unclear.

The vast majority of PrEP users are men. There are large racial, gender and geographic imbalances in distribution HIV and the population taking preventive medications. For example, based on patterns of new infections in the United States, the group that would benefit from PrEP is: cisgender black womenwhose gender identity matches the sex assigned at birth.

2. Don't assume your doctor knows about PrEP.

If your doctors are not well informed, start with self-education. There are also clinical guidelines and information you can share with your provider. Contact your state or local health department for instructions on prescribing PrEP. For example, the New York State Department of Health AIDS Institute has information for providers.

The CDC also has recommendations for PrEP.but many of the agency's LGBTQ+ health websites are constantly changing. Under the Trump administration, some HIV/AIDS resources were removed from federal websites. Others now have the headlines say: “This page does not reflect biological reality and is therefore rejected by the Administration and this Department.”

3. Get lab work online

Johnson said Hurley's experiences with billing errors are common. “Lab costs in particular are proving to be very challenging,” Johnson said.

For example, in a doctor's office, laboratory work required for PrEP may be incorrectly labeled as diagnostic test instead of prevention. Patients like Hurley may receive a bill they won't have to pay. If your doctor's office makes mistakes, please share. PrEP Billing and Coding Guide from NASTAD, an association of public health officials who manage HIV and hepatitis programs.

Try the lab inside the network. If a lab is out of network, it can be difficult to appeal, Johnson said.

If the bills keep coming, appeal them. And if you can't resolve the dispute, Johnson said, file a complaint with the agency that regulates your insurance plan.

4. Look for ways to save money

There are different types of PrEP. For example, there are cheaper generic versions of Truvada marketed as emtricitabine/tenofovir disoproxil fumarate, often abbreviated to FTC/TDF. New PrEP drugs Apretude and Yeztugo have list prices in the thousands of dollars. Check your insurance formulary and ask your doctor to prescribe medications that your plan covers.

With many health insurance premiums set to rise sharply and millions of people at risk of losing Medicaid coverage, many people could be left without health insurance in 2026. Drug manufacturers such as Gilead And News have assistance programs for eligible patients. If you have to pay out of pocket, prescription price comparison sites like GoodRx can help you find pharmacies with the lowest prices.

5. Consider telehealth

Telehealth is increasingly popular option if you don't live near a qualifying provider or are looking for a more private way to get PrEP. In 2024, approximately one in five people receiving PrEP used telemedicine. Online pharmacies such as Owner And Q Care Plus offer PrEP without a face-to-face meeting and lab work can be done at home. Some telemedicine options allow reduce cost if you are not insured.

Telehealth can also increase the number of doctors willing to prescribe PrEP. And some patients say talking to a remote provider feels like a safer place to talk about sexual health. “They are comfortable in their bedroom or living room, but can interact virtually with the service provider. This can open many doors to honesty and trust,” said Alex Sheldon, executive director of GLMA.

6. Seek supportive care.

GLMA created LGBTQ+ Health Directorya searchable database of gay health care providers nationwide. As Hurley discovered, living in a major metro area is no guarantee that your doctor will be up to date on the latest news about LGBTQ+ health care.

Ask locals you trust for recommendations. You might be surprised to find good options nearby.

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