When Matthew Hurley wanted to start taking PrEP to prevent HIV, his doctor didn't know about the drug, and when he was finally prescribed it, the bills he was sent were expensive… and wrong. “I decided to write to them because the process was really frustrating.” At some point I asked myself, “Should I just stop taking this medication so I don't have to deal with these billing issues and these huge bills?”
— Matthew Hurley, 30, from Berkeley, California.
A couple of years ago, Matthew Hurley received a message that many fear: “When was the last time you were tested for STDs (sexually transmitted diseases)?”
A man with whom Hurley had recently had unprotected sex had just received a positive HIV diagnosis.
Hurley went to the clinic to get tested. “Luckily I didn’t have HIV, but it was a wake-up call,” he said.
This experience led Hurley to seek information about PrEP, an acronym that stands for pre-exposure prophylaxis. This antiretroviral drug significantly reduces the chance of becoming infected with HIV, the virus that causes AIDS. When taken as directed, therapy 99% effective to prevent sexual transmission.
Hurley started taking PrEP and everything went well for the first nine months until his health insurance changed and he had to see a new doctor. “When I mentioned PrEP to him, he asked, 'What is it?' And I thought: This doesn't look good.”
Hurley, a librarian, took on the role of teacher. She explained to the doctor that her PrEP regimen included taking one pill a day and getting lab tests every three months to check for possible infections or health complications.
Hurley was surprised to learn more about PrEP than her own doctor.
The Food and Drug Administration (FDA) has approved the first drug. Truvada, 2012. In addition, Hurley lives in the San Francisco Bay Area, one of the areas with highest concentration of LGBT+ people in the country and with a long history healthcare and HIV activism.
Older friends and acquaintances who had lived through the AIDS epidemic told him how difficult it was to live in a time when there were no effective treatments and prevention methods. For him, the decision to take PrEP was a way to protect his health, as well as the health of his community.
He insisted, and the doctor, after conducting his own research, agreed to prescribe the medicine.
Hurley received the help he needed, but had to take on the role of expert in the medical consultation.
“It’s a big burden,” said Beth Oller, a family medicine physician and board member of GLMA, a national organization for LGBTQ+ and allied health professionals focused on health equity. “You want to be able to go to the doctor to talk about your health without having to educate and advocate for yourself every step of the way.”
Oller added that many people strange had negative experience at consultations. “I have many patients who have not received preventative care for years because of medical stigma,” she said.
Billing problems
Overcoming initial barriers to access to HIV prevention medications was just the beginning. Hurley began receiving a number of bills related to PrEP: Blood tests: $271.80. Medical visit: $263.
He was surprised. I knew (although the clearing house did not seem to know) that, according to Affordable Care Act (ACA), most private insurance programs, and expanded Medicaid programs. must cover PrEP and related services, like laboratory testsare covered as preventive care at no cost to the patient.
The bills for doctor visits and tests were piling up.
Hurley complained about the bills and was almost always refused. But he again protested.
He shared a series of letters complaining about a specific service, in which the billing service acknowledged that the blood test was initially mistaken for the diagnosis. Once the error was corrected, the service was covered by insurance, Hurley said.
It may seem like the problem was resolved quickly and easily, but Hurley says the process took forever. Over the course of several months, he had to deal with at least six erroneous invoices. He estimates he spent more than 60 hours investigating the allegations.
During this time, he said, the billing department “kept sending me emails and invoices that said: you're in debt, you're in debt, you're in debt“
Fed up with so many complications, Hurley decided to find a healthcare provider (and billing office) who had more knowledge about PrEP. He chose the AIDS Healthcare Foundation. There, the medical team was able to explain the pros and cons of the various preventative treatments available. They knew how to handle Hurley's insurance form.
Since then he has not received any more unexpected bills.
But having to separate sexual health and PrEP from general health care is not ideal.
“I have to deal with several different organizations to provide comprehensive care,” he said.
A provider does not have to be an HIV specialist, infectious disease specialist, or even a doctor to prescribe PrEP. The Centers for Disease Control and Prevention (CDC) encourages primary care providers to treat PrEP like any other treatment. preventive medicine.
How to avoid some of the headaches Hurley faced:
1. Find out if PrEP is right for you
According to CDC estimates, 2.2 million people Americans could benefit from using drugs to prevent HIV, but only a little more than a quarter get them.
“Not everyone knows about PrEP, and many people have heard of the drug but don't know it can help them,” explained Jeremiah Johnson, executive director of PrEP4All, an organization dedicated to universal access to medications and HIV prevention.
According to CDC clinical guidelines, anyone sexually active You may want to consider adding PrEP to your preventative treatment plan.
It is especially recommended for those who do not regularly use condoms, 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 unknown.
The vast majority of those who use PrEP are men. There are excellent racial, gender and geographic inequality both in the spread of HIV cases and in access to preventive medicine.
For example, based on the pattern of new infections in the United States, one group that could benefit from this drug is cisgender black womenwhose gender identity matches the sex assigned at birth.
2. Don't assume your doctor knows what PrEP is.
If your doctor is not informed enough, start by informing yourself. You may also bring clinical guidelines and related information. Many state or local public health agencies have specific guidelines for professionals. For example, the New York State Department of Health AIDS Institute has materials. for suppliers.
Los The CDC also has recommendations for PrEP.but many of the agency's LGBTQ+ health websites are under review. Under the Trump administration, some HIV/AIDS resources were removed from federal websites. Others now include such messages: “This page does not reflect biological reality, and therefore this Administration and this Department reject it.”
3. Get tested in network laboratories
Johnson noted that billing errors like Hurley's are very common. “Laboratory testing costs can be particularly challenging,” he said.
For example, in a clinic they may incorrectly code testing required for PrEP as if it were diagnosis not prevention. As a result, patients like Hurley end up with bills they don't have to pay.
If medical staff make similar mistakes, you can tell them about it. PrEP Coding and Billing Guide NASTAD, an association of public health authorities that manages HIV and hepatitis programs.
Get lab tests through your insurance network. Taking them offline, Johnson warned, could make them more difficult to appeal.
If the bills keep coming, file an appeal. And if you can't resolve the dispute, Johnson recommends filing a complaint with the health plan's regulator.
4. Find ways to save money
There are several types of PrEP. There are cheaper generic versions of Truvada, such as the emtricitabine/tenofovir disoproxil fumarate combination, often abbreviated FTC/TDF. New versions such as Apretude and Yeztugo They have list prices in the thousands of dollars. Check your insurance policy and ask your doctor to prescribe a covered drug.
With premiums expected to rise and millions of people at risk of losing Medicaid coverage, many could be without health insurance by 2026. Pharmaceutical companies such as Gilead th News offer assistance programs for eligible patients. If you have to pay out of pocket, sites like GoodRx can help you find pharmacies with the lowest prices.
5. Consider telemedicine
Telemedicine has become popular choiceespecially for people who do not live near inclusive providers or are looking for a more confidential way to access PrEP.
In 2024, about one in five people taking PrEP would do so. Online pharmacies such as Owner th Q Care Plus They offer PrEP without the need for an in-person consultation, and the tests can be taken at home.
Some platforms offer options cut costs if you don't have insurance.
Telemedicine also increases the number of providers willing to prescribe PrEP. And for many patients, communicating with a provider remotely can help them feel safer. “They are comfortable in their bedroom or living room, but can interact virtually with the service provider. This opens many doors to honesty and trust,” explained Alex Sheldon, GLMA Executive Director.
6. Seek inclusive help.
GLMA created LGBTQ+ Health Directorya database of healthcare professionals across the country who identify as gay. As Hurley discovered, living in a big city doesn't guarantee that your doctor will be aware of LGBTQ+ health issues.
Ask trusted people in your community. There may be good options near you.
The Health Helpline can help you overcome barriers in the health care system so you can access good health care. Send us your most challenging question and we'll assign someone to investigate it. Share your story and your question here. This joint project is a co-production of NPR and KFF Health News.
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