To Knock Down Health-System Hurdles Between You and HIV Prevention, Try These 6 Things

When Matthew Hurley was considering taking PrEP to prevent HIV, the doctor hadn’t heard of the drug, and when he finally prescribed PrEP, the bills sent to Hurley were expensive…and false. “I decided to write because the process was really, really frustrating.” At one point, Hurley asked: “Am I just going to stop this medication so I don’t have to deal with these coding issues and scary bills anymore?

— Matthew Hurley, 30, of Berkeley, California

A few years ago, Matthew Hurley received the kind of text people fear.

It said, “When was the last time you had an STD test?”

A person with whom Hurley had recently had unprotected sex had just tested positive for HIV.

Hurley went to a clinic and was tested. “Luckily I hadn’t contracted HIV, but it was a wake-up call,” they said.

That experience prompted Hurley to research PrEP, short for pre-exposure prophylaxis. Antiretroviral drugs significantly reduce the risk of contracting HIV, the virus that causes AIDS. The therapy 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 told him about PrEP, he said, ‘What is it?’ And I was like, oh boy.

Hurley, who is 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 check for infections or other health problems.

Hurley was surprised that they knew more about PrEP than the doctor. The FDA approved the first drug, Truvada, in 2012, and Hurley lives in the San Francisco Bay Area, a place with one of the highest concentrations of LGBTQ+ people in the country and a deep history of HIV and health care activism. Hurley said older friends and acquaintances who survived the AIDS epidemic shared the horror of living in a time when there were no effective treatments or drugs for prevention. Deciding to take PrEP seemed like a way to protect their health and their community.

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

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

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

Oller said many gay people have had negative experiences during their medical visits.

“I have a lot of patients who haven’t had preventive care for years because of medical stigma,” she said.

Billing Issues

Removing barriers to accessing HIV prevention medications was only 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 the billing office didn’t — that under the Affordable Care Act, most private insurance plans and Medicaid expansion programs are required to cover PrEP and ancillary services, like lab tests, on a preventative basis, without cost sharing.

Bills for doctor visits and blood tests pile up.

Hurley would appeal the bill and get a refusal almost every time. Then they would appeal again.

Hurley shared a series of appeal letters for one service, in which the billing office acknowledged that the blood tests were initially miscoded as a diagnosis. Once that was corrected, Hurley said, the insurer paid for the service.

It may seem quick or easy to fix, but Hurley said it took “forever to complete the process.” They processed at least six incorrect invoices over several months. Hurley estimated they spent more than 60 hours disputing the invoices.

Meanwhile, Hurley said, the billing department “continues to send me emails and invoices saying: You are late. You are late. You are late.»

Fed up with the hassle, Hurley decided to find a healthcare provider (and billing office) who was more knowledgeable about PrEP. They opted for 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 an unexpected bill.

But separating sexual health care and PrEP from primary care has not been ideal.

“I have to deal with multiple organizations to get my holistic health taken care of,” Hurley said.

A provider does not need to be an HIV specialist, infectious disease expert, or doctor to prescribe PrEP. The Centers for Disease Control and Prevention encourages primary care providers to treat PrEP like other preventative medications.

To avoid some of the headaches Hurley faced, try these tips:

1. Find out if PrEP is right for you

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

“Not enough people know about PrEP, and a number of people 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 medication.

According to CDC clinical guidelines, PrEP can be prescribed as part of a preventative health plan to anyone who is sexually active. It is particularly recommended for people who do not use condoms regularly, 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 disparities in the distribution of HIV and in populations taking preventive medications. For example, based on patterns of new infections in the United States, one group that would benefit from PrEP is cisgender Black women, whose gender identity matches the sex assigned at birth.

2. Don’t assume your provider knows about PrEP

If your doctors are not knowledgeable, start by finding out. There are also clinical guidelines and information you can share with your provider. Check with your state or local health department for a practical guide to prescribing PrEP. For example, the New York State Department of Health’s AIDS Institute offers information to providers.

The CDC also has guidance on PrEP, but many of the agency’s websites covering LGBTQ+ health are still evolving. Under the Trump administration, some HIV/AIDS resources were removed from federal websites. Others now have headers saying: “This page does not reflect biological reality and therefore the Administration and this Department reject it.” »

3. Get Networked Lab Jobs

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

For example, a doctor’s office may mistakenly code lab work required for PrEP as a diagnostic test rather than preventative care. Patients like Hurley can end up with a bill they shouldn’t have to pay. If your doctor’s office makes mistakes, share the PrEP billing and coding guide from NASTAD, an association of public health officials who administer HIV and hepatitis programs.

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

If the bills keep coming, appeal. 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

There are different types of PrEP. For example, there are less expensive generic versions of Truvada, sold under the name emtricitabine/tenofovir disoproxil fumarate, often abbreviated to FTC/TDF. The new PrEP drugs Apretude and Yeztugo have list prices in the thousands of dollars. Check your insurance form and ask your doctor to prescribe medications your plan will cover.

With many health care premiums rising dramatically and millions of people at risk of losing their Medicaid coverage, many people could find themselves without health insurance this year. Drugmakers such as Gilead and ViiV have assistance programs for eligible patients. If you must pay out of pocket, prescription price comparison websites, like GoodRx, can help you find pharmacies with the cheapest price.

5. Consider telehealth

Telehealth is an increasingly popular option if you don’t live near a verified provider or are looking for a more private way to obtain PrEP. By 2024, approximately 1 in 5 people on PrEP were using telemedicine. Online pharmacies like Mistr and Q Care Plus offer PrEP without an in-person appointment, and lab work can be done at home. Some telehealth options help reduce costs if you are uninsured.

Telehealth may also increase the number of doctors willing to prescribe PrEP. And some patients say that talking with a provider remotely seems like a safer setting to talk about sexual health. “They are in the comfort of their own bedroom or living room, but can communicate virtually with a provider. This can open many doors to honesty and trust,” said Alex Sheldon, executive director of GLMA.

6. Seek Affirming Care

GLMA created the LGBTQ+ Healthcare Directory, a searchable database of healthcare providers across the country who identify as gay-friendly. As Hurley discovered, living in a large metropolitan area doesn’t guarantee that your doctor will be knowledgeable about LGBTQ+ health care.

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

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