When Matthew Hurley tried to start taking PrEP to prevent HIV, his doctor didn’t know about the drug, and when he finally got it prescribed, the bill he sent was expensive… and expensive. “I decided to write to them because I was really frustrated with the process.” At one point I asked myself, “Should I just stop taking this medication so I don’t have to deal with these bills and the huge costs?”
— Matthew Hurley, 30, from Berkeley, California
A few years ago, Matthew Hurley received the type of text many people fear. “When was the last time you were tested for a sexually transmitted disease (STD)?”
The person with whom Hurley had recently had unprotected sex had just been diagnosed as HIV positive.
Hurley went to the hospital to get tested. “Luckily I don’t have HIV, but this was a wake-up call,” he said.
That experience led Hurley to seek information about PrEP, short for pre-exposure prophylaxis. These antiretroviral drugs greatly reduce your chances of getting HIV, the virus that causes AIDS. If taken as directed, treatment may include: 99% effective To prevent sexual transmission.
Hurley started taking PrEP and everything went well for the first nine months until her health insurance changed and she had to see a new doctor. “When I mentioned PrEP to him, he said, ‘What is that?’ And I thought, ‘This doesn’t look good.’”
Hurley, the librarian, took on the role of teacher. She explained to her doctor that her PrEP regimen includes taking one pill every day and getting lab tests every three months to check for possible infections or health complications.
Hurley was surprised to discover that she knew more about PrEP than her doctor.
The U.S. Food and Drug Administration (FDA) has approved the first drug. Truvada, 2012. Hurley also lives in the San Francisco Bay Area. Highest concentration of LGBTQ+ population in the country and with a long history Health and HIV Action.
Older friends and acquaintances who had survived the AIDS epidemic told him how difficult it was to live in a time when there was no effective treatment or prevention. For him, the decision to take PrEP was a way to protect his own health and the health of his community.
So he insisted, and the doctor, after doing his own research, agreed to prescribe the medication.
Although Hurley received the treatment she needed, she had to assume the role of a professional in her medical consultations.
“This is a huge burden,” said Beth Oller, a family medicine physician, board member of GLMA, a national LGBTQ+ organization, and health care professional focused on health equity. “You want to be able to go to your doctor and talk about your health without having to educate and advocate for yourself every step of the way.”
Oller added that many people have: queer had negative experience Consulting. “Many patients have not received preventive care for years because of medical stigma,” she said.
payment issues
Overcoming initial barriers to accessing HIV prevention medications was only the beginning. Hurley started receiving a series of bills related to PrEP: Blood tests: $271.80. Office visit: $263.
He was surprised. I knew it, although the billing office didn’t seem to. Affordable Care Act (ACA), most private insurance and expanded Medicaid programs. PrEP needs to be addressed and related services, like a lab testPreventive care is covered at no cost to patients.
Bills for doctor visits and tests are piling up.
Hurley complained about the bills and almost always received a refusal. But he protested again.
He shared a series of complaint letters about a particular service, in which the billing office admitted that a blood test had initially been incorrectly coded as a diagnosis. Insurance covered the service once the error was corrected, according to Hurley.
It may seem like a quick and easy fix, but Hurley said the process took a long time. He had to deal with at least six incorrect invoices over several months. He estimates he spent more than 60 hours resolving the charges.
During that time, he said, the billing department “kept sending me emails and bills saying: You are in arrears, you are in arrears, you are in arrears“.
Tired of so many complications, Hurley decided to find a health care provider (and billing office) with more knowledge about PrEP. He chose the AIDS Healthcare Foundation. There, medical staff were able to explain the pros and cons of the various preventive treatments available. They knew how to process Hurley’s insurance forms.
Since then, he has received no more unexpected bills.
However, separating sexual health and PrEP treatment from general medical care is not ideal.
“To provide me with comprehensive care, I have to work with several different organizations,” he said.
A provider does not have to be an HIV specialist, infectious disease specialist, or physician to prescribe PrEP. The Centers for Disease Control and Prevention (CDC) recommends that primary care providers treat PrEP as they would other care. preventive medicine.
How to avoid the headaches Hurley faced:
1. Find out if PrEP is right for you
CDC estimates: 2.2 million people Americans could benefit from using HIV prevention medications, but only a little more than a quarter receive them.
“Not everyone knows about PrEP, and there are many people who have heard of this drug but don’t know that it can help them,” explained Jeremiah Johnson, executive director of PrEP4All, an organization dedicated to universal access to the drug and HIV prevention.
According to CDC clinical guidelines, anyone who is sexually active can consider including PrEP as part of their preventive treatment plan.
It is especially recommended for people who do not use condoms regularly, people who inject drugs and share needles, men who have sex with men, and people who have partners who are infected with HIV or whose HIV status is uncertain.
The majority of people using PrEP are men. It’s great Racial, gender, and geographic inequalities both in the distribution of HIV cases and in access to preventive medicine.
For example, based on emerging infection patterns in the United States, one group that could benefit from this drug is cisgender black women whose gender identity matches their sex assigned at birth.
2. Don’t assume your doctor knows what PrEP is.
If your doctor is not familiar with Start by informing yourself. You can also get clinical guides and related information. Many state or local public health agencies have specific guidance for professionals. For example, here’s data from the New York State Department of Health’s AIDS Institute: for suppliers.
ross The CDC also has guidelines for PrEP.However, many of the organization’s websites related to LGBTQ+ health are under review. During the Trump administration, some HIV/AIDS resources were removed from federal websites. other people now Please include the following message:: “This page does not reflect biological reality and is therefore rejected by the current government and headquarters.”
3. Get tested at an in-network lab
Johnson noted that billing errors like Hurley’s are very common. “The cost of laboratory testing in particular can be complex,” he said.
For example, a clinic may incorrectly code a test required for PrEP as if it were required for PrEP. diagnosis It is not preventive care. As a result, patients like Hurley end up with bills they don’t have to pay.
If your medical staff makes these mistakes, you can let them know. PrEP Coding and Billing Guide He is a member of NASTAD, the association of public health authorities that manages HIV and hepatitis programs.
Complete lab testing within your insurance network. Johnson warned that taking it outside the network could make appeals more difficult.
If the bills keep coming, appeal. And if you can’t resolve the dispute, Johnson recommends filing a complaint with your health plan’s regulator.
4. Find ways to save
There are several types of PrEP. There are cheaper generic versions of Truvada, such as the emtricitabine/tenofovir disoproxil fumarate combination (often abbreviated as FTC/TDF). The latest version as follows Sharpness and Yez2go They have list prices in the thousands of dollars. Check your insurance formulary and ask your doctor to prescribe covered medications.
With health insurance premiums expected to rise and millions of people at risk of losing Medicaid coverage, many could be left without health insurance by 2026. Gilead why head We offer assistance programs for patients who qualify. If you have to pay out of pocket, sites like GoodRx can help you find a pharmacy with the lowest prices.
5. Consider telemedicine
It became telemedicine. popular choiceIt’s especially ideal for people who don’t live near a comprehensive provider or are looking for a more personal way to access PrEP.
By 2024, about 1 in 5 people taking PrEP will do so in this way. Online pharmacies such as master why Q Care Plus We offer PrEP without the need for an in-person consultation, and the test can be done at home.
Some platforms offer the following options: save money If you don’t have insurance.
Telemedicine also expands the number of specialists willing to prescribe PrEP. And for many patients, talking to their health care provider remotely can make them feel safer. “They can interact virtually with their provider from the comfort of their bedroom or living room. This opens many doors to honesty and trust,” explained Alex Sheldon, Executive Director of GLMA.
6. Get comprehensive care
Created by GLMA LGBTQ+ Healthcare DirectoryA national database of medical professionals identified as queer-friendly. As Hurley discovered, living in a big city doesn’t guarantee that your doctor will have up-to-date information on LGBTQ+ health issues.
Ask trusted people in your community. There may be a good option near you.
The Health Care Helpline helps you navigate obstacles in the health system so you can get good care. Send us your most complex questions so we can assign someone to investigate. Share your stories and questions here. This joint project is a joint production of NPR and KFF Health News.
