Advice for getting PrEP to prevent HIV: NPR

When a librarian in Berkeley, California, was looking to take PrEP to prevent HIV, the doctor had never heard of the drug, and the bills that came back were expensive…and wrong. The process was so frustrating that at one point they wondered, “Am I going to get off this medication to stop dealing with coding issues and these scary bills?”
– Matthew Hurley, 30, from Berkeley, California

Two years ago, Matthew Hurley received the kind of text messages people dread. She said, “When was the last time you were tested for STDs?”

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

Hurley, who uses she/them pronouns, went to the clinic and got tested. “Fortunately, I did not have HIV, but it was a wake-up call,” they said.

That experience led Hurley to research PrEP, short for pre-exposure prophylaxis. Antiviral medication significantly reduces the chance of contracting HIV, the virus that causes AIDS. The treatment is 99% effective In protecting people from sexual transmission when taken as prescribed.

Hurley started PrEP and everything was fine for the first nine months — until their health insurance changed and they started seeing a new doctor: “When I showed him PrEP, he said, ‘What is this?’ And I was like, oh boy.”

Hurley, a librarian, went into teaching mode. They explained that the PrEP regimen they were on required daily pills and lab work every three months to look for serious infections or other health problems.

Hurley was surprised that they knew more about the pre-exposure prophylaxis program than the doctor. The US Food and Drug Administration (FDA) approved the first drug, Truvada, Back in 2012Hurley lives in the San Francisco Bay Area, a place that includes… Highest concentrations Of LGBTQ+ people in the nation and Deep history HIV and health care activism.

Older friends and acquaintances who survived the AIDS epidemic shared the horror of living in a time when there was no effective treatment or medications for prevention, Hurley said. Deciding to take PrEP seemed to be an empowering way to protect their health and community.

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

Hurley got the care he needed, but they had to be the experts in the exam room.

The Health Care Helpline helps you overcome health system barriers between you and quality care. Send us your tough question and we might assign a reporter to solve the mystery. Share your story and question here.

“This is a huge burden,” said Beth Oller, MD, a family medicine physician and board member of GLMA, a national organization for the LGBTQ+ community and allied health care professionals focused on health equity. “You really want someone you can walk in and talk to [to] “Transform your health concerns without feeling like you have to educate and defend yourself at every turn.”

Many gay people have gone through this, Oller said Negative experiences During health care visits. “I have a lot of patients who haven’t received preventive care for years because of medical stigma,” she said.

Billing headaches

Removing barriers to access to HIV prevention medications is just the beginning. Hurley began receiving a series of bills for PrEP-related care: Blood test: $271.80. Office visit: $263.
Once again, Hurley was surprised. They knew – even if it wasn’t the billing office – they knew it under Affordable Care ActMost private insurance plans and Medicaid expansion programs are required to cover Preparatory services and auxiliary services, Such as laboratory testsAs a preventive method without cost sharing.

Bills for doctor visits and blood draws piled up.

Hurley appealed the bill and received rejection almost every time. After that, they will resume again.

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

This problem may seem quick or easy to solve, but Hurley said it took “forever to complete the process.” They dealt with at least six incorrect invoices over several months. Hurley estimated they spent more than 60 hours competing on the bills.

During that period, Hurley said, the billing department continued to send me emails and invoices that said: I’m late. I’m late. I’m late.“

Fed up with this hassle, Hurley decided to find a health care provider (and billing office) better informed about pre-exposure prophylaxis (PrEP). They settled in the AIDS Healthcare Foundation. The care team there was able to discuss the pros and cons of different PrEP regimens and knew how to navigate Hurley’s insurance formulary.

Hurley hasn’t received an unexpected bill since.

But separating sexual health care and pre-exposure prophylaxis from primary care was not ideal.

“I have many organizations to deal with to deal with my overall health,” Hurley said.

The provider does not need to be an HIV specialist, infectious disease expert, or physician to prescribe pre-exposure prophylaxis. The Centers for Disease Control and Prevention encourages primary care providers to administer pre-exposure prophylaxis medications Other preventive medications.

To avoid some of the headaches 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 the Centers for Disease Control and Prevention (CDC) clinical guidelines, PrEP may be prescribed as part of a preventative health plan. Anyone who is sexually active. It 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 who have relationships with HIV-positive partners or whose HIV status is unclear.

The vast majority of PrEP users are men. There is significant race, gender, and geography Variation in distribution of HIV and the population taking preventive medicine. For example, based on new infection patterns in the United States, a group that may benefit from a pre-exposure prophylaxis program is: Black cisgender womenwhose gender identity corresponds to their sex assigned at birth.

2. Don’t assume your provider knows anything about PrEP

If your doctors aren’t well informed, start with that Educate yourself. There are also guidelines and clinical information you can share with your provider. Check with your state or local health department for a guideline for prescribing PrEP. For example, the New York State Department of Health’s AIDS Institute has information For service providers.

the The CDC also has PrEP guidelinesbut many of the agency’s sites dealing with LGBTQ+ health are in a state of flux. Under the Trump administration, some resources related to HIV/AIDS have been removed from federal websites. Others have it now Heads say: “This page does not reflect the biological reality and is therefore rejected by the administration and this department.”

3. Get in-network lab work

Hurley’s experience with billing errors is common, Johnson said. “Laboratory expenses in particular end up being very difficult,” Johnson said.

For example, a doctor’s office may mistakenly code lab work required for PrEP as Diagnostic test Instead of preventive care. Patients like Hurley may end up with a bill they shouldn’t have to pay. If your doctor’s office is making mistakes, share PrEP Billing and Coding Guide From NASTAD, an association of public health officials who manage HIV and hepatitis programs.

Try to do your lab work over the network. If the lab is out of network, it may be difficult to appeal, Johnson said.

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

4. Find ways to save

There are different types of PrEP. There are lower-cost generic versions of Truvada, for example, sold as emtricitabine/tenofovir disoproxil fumarate, often abbreviated FTC/TDF. Newer PrEP Drugs Apretude and Yeztugo It has a list price in the thousands of dollars. Check your insurance booklet and ask your doctor to prescribe which medication your plan will cover.

With health care premiums expected to rise dramatically and millions at risk of losing Medicaid coverage, many people could go without health insurance in 2026. Drug manufacturers such as Gilead and Driving It has 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 cheapest prices.

5. Consider telehealth

Telehealth is Increasingly popular Option if you don’t live near a confirmed provider or are looking for a more private way to get PrEP. In 2024, nearly 1 in 5 people in a pre-exposure prevention program used telemedicine. Online pharmacies such as Mastered and QCare Plus PrEP is offered without an in-person appointment, and lab work can be done at home. Some telehealth options have ways to do this Cost reduction If you are not insured.

Telehealth can also increase the number of doctors willing to prescribe pre-exposure prophylaxis (PrEP) medications. Some patients say talking with their provider remotely feels like a safer place to talk about sexual health. “They’re in the comfort of their bedroom or living room but can actually interact with a provider. That can open a lot of doors to honesty and trust,” said Alex Sheldon, GLMA’s executive director.

6. Look for proven care

Created by GLMA LGBTQ+ Healthcare Guidea searchable database of healthcare providers across the country who identify as LGBT-friendly. As Hurley discovered, living in a major metro area doesn’t guarantee that your doctor will be up to date on healthcare for the LGBTQ+ community.

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

The Health Care Helpline helps you overcome health system barriers between you and quality care. Send us your tough question and we might assign a reporter to solve the mystery. Share your story and question here. The crowdsourcing project is a co-production between NPR and KFF Health News.

KFF Health News It is a national newsroom that produces in-depth journalism on health issues and is one of the core drivers of KFF.