When Matthew Hurley tried to take PrEP for HIV prevention, his doctor had never heard of the drug, and when he finally prescribed PrEP, the bill sent to Hurley was expensive and… “The process was so frustrating that I decided to write about it.” At one point, Hurley asked: “Should I stop taking this medication to deal with the coding issues and scary bills?”
— Matthew Hurley, 30, from Berkeley, California
A few years ago, Matthew Hurley received the kind of text people fear.
“When was the last time you were tested for an STD?”
Hurley had recently had unprotected sex with someone who tested positive for HIV.
Hurley went to the hospital and got tested. “Luckily I don’t have HIV, but this was a wake-up call,” they said.
That experience led Hurley to seek out PrEP, short for pre-exposure prophylaxis. Antiretroviral drugs greatly reduce your chance of getting HIV, the virus that causes AIDS. The treatment is 99% effective When taken as prescribed, it can help protect people from sexual transmission.
Hurley started PrEP and everything was fine for the first nine months. This was what it looked like until my health insurance changed and I started seeing a new doctor. “When I introduced him to PrEP, he said, ‘What is that?’ And I thought, ‘Oh my.’”
Hurley, the librarian, went into lecture mode. They explained that PrEP therapy requires taking pills every day and having lab work done every three months to look for any breakthrough infections or other health problems.
Hurley was surprised to learn more about PrEP than her doctor. The FDA approved the first drug, Truvada. again in 2012Hurley lives in the San Francisco Bay Area. highest concentration National LGBTQ+ population and deep history It’s about HIV and health care. Hurley said longtime friends and acquaintances who survived the AIDS epidemic shared the horror of living in a time when there were no effective treatments or preventive drugs. Deciding to take PrEP felt like an empowering way to protect my health and my community.
So Hurley put pressure on her doctor, and after he did his own research, he agreed to prescribe PrEP.
Hurley got the treatment she needed, but she had to be an expert in the exam room.
“It’s a huge burden.” said Beth Oller, a family medicine physician and executive director of GLMA, a national LGBTQ+ organization and coalition of health care professionals focused on health equity. “You really want someone you can go in and talk about health issues without feeling like you have to educate and advocate for yourself at every turn.”
Oller said this has happened to many queer people. negative experience During a health care visit.
“There are many patients who have not received preventive care for years because of medical stigma,” she said.
billing issues
Removing barriers to access to HIV prevention medications was just the beginning. Hurley began receiving a series of bills for PrEP-related treatment. Blood test: $271.80. Office visit: $263.
Again, Hurley was surprised. They knew it was down there – even if the claims office didn’t. Affordable Care Act Most private insurance plans and Medicaid expansion programs needed to cover PrEP and ancillary services; like a lab testIt is preventative with no cost sharing.
Bills for doctor visits and blood draws are piling up.
Hurley appealed the bill, but was rejected almost every time. Then they will appeal 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 a diagnosis. Hurley said once the problem was resolved, the insurance company paid for the service.
Although it may sound quick and easy to resolve, Hurley said, “the process takes a long time to complete.” They processed at least 6 incorrect invoices over a period of several months. Hurley estimated he spent more than 60 hours challenging the bill.
During that time, Hurley said the billing department “continues to send me emails and bills saying things like: It’s overdue. It’s overdue. It’s 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 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 any unexpected bills since.
However, separating sexual health care and PrEP from primary care was not ideal.
“There are several organizations that need to be addressed to address my overall health issues,” Hurley 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 recommends that primary care providers treat PrEP as follows: other preventive medications.
To avoid the difficulties Hurley experienced, try these tips:
1. Find out if PrEP is right for you
CDC estimates 2.2 million Americans could benefit from HIV prevention medications, but more than a quarter of that group have been prescribed them.
“Not enough people know about PrEP, and there are a lot 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 HIV prevention and universal access to the drug.
According to clinical guidelines from the CDC, PrEP may be prescribed as part of a preventive health plan. a sexually active person. 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 are in relationships with an HIV-infected partner or whose HIV status is unclear.
The majority of PrEP users are men. Race, gender, and geographic location vary greatly. Differences in Distribution Proportion of population taking HIV and prophylaxis medications. For example, based on emerging infection patterns in the United States, one group that could benefit from PrEP is cisgender black women whose gender identity matches their sex assigned at birth.
2. Don’t assume your provider knows about PrEP
If your doctor isn’t familiar with this, start with: educate yourself. There are also clinical guidelines and information you can share with your health care provider. Contact your state or local health department for guidance on how to prescribe PrEP. For example, the New York State Department of Health’s AIDS Institute provides the following information: for suppliers.
that CDC also has PrEP guidelinesHowever, many of the websites of organizations that address LGBTQ+ health are in flux. Under the Trump administration, some HIV/AIDS materials were removed from federal websites. others are now header horse: “This page does not reflect biological reality and is therefore rejected by the Executive Branch and Headquarters.”
3. Get lab work within your network
Johnson said Hurley’s experience with billing mistakes was common. “Lab costs, in particular, are very challenging,” Johnson said.
For example, a hospital may incorrectly code the lab work required for PrEP as: diagnostic test Instead of preventive care, patients like Hurley may end up with bills they don’t have to pay. If you are making a mistake at your doctor’s office, share it. PrEP Billing and Coding Guide Provided by NASTAD, the association of public health officials that manages HIV and hepatitis programs.
Complete lab work within your network. If the lab is out of network, appeals can be difficult, Johnson said.
If the bills keep coming, appeal. And 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. For example, there is a lower-cost generic version of Truvada sold as emtricitabine/tenofovir disoproxil fumarate (often abbreviated as FTC/TDF). Newer PrEP Drugs Sharpness and Yez2go They have list prices in the thousands of dollars. Check your insurance formulary and ask your doctor to prescribe drugs covered by your plan.
With many health care premiums rising rapidly and millions at risk of losing Medicaid coverage, many people could find themselves without health insurance this year. Pharmaceutical manufacturers such as Gilead and ViiV Assistance programs are available for patients who qualify. If you have to pay out-of-pocket, prescription drug price comparison websites like GoodRx can help you find the pharmacy with the lowest prices.
5. Consider telehealth
Telemedicine become increasingly popular Select this option if you do not live near a provider who accepts it, or if you are looking for a more private way to get PrEP. By 2024, approximately 1 in 5 PrEP users will have used telehealth. Online pharmacies such as master and Q Care Plus We offer PrEP without an in-person appointment and lab work can be done at home. Some telehealth options include: lower costs If you do not have insurance.
Telehealth could also increase the number of doctors prepared to prescribe PrEP. And some patients say that speaking with a remote provider feels like a safer environment to talk about sexual health. “They can interface with their service providers virtually from the comfort of their own bedroom or living room. This can open many doors for honesty and trust,” said Alex Sheldon, executive director of GLMA.
6. Find positive therapy
Created by GLMA LGBTQ+ Healthcare DirectoryA searchable database of national health care providers identified as queer-friendly. As Hurley discovered, living in a major metropolitan area is no guarantee that your doctor will provide you with up-to-date information on LGBTQ+ health care.
Ask trusted locals for recommendations. You might be surprised to find some good options nearby.
The Health Care Helpline helps you find the barriers in the health system that stand between you and good care. Send us your tough questions so we can solve them through policy research. Share your story. The crowdsourcing project is a joint production of NPR and KFF Health News.
