Zach Dyer and Oona Zenda
Illustrations by Oona Zenda
When Matthew Hurley was seeking to take PrEP to forestall HIV, the physician hadn’t heard of the medication, and when he lastly did prescribe PrEP, the payments despatched to Hurley have been costly … and flawed. “I decided to write in because the process was really super frustrating.” At one level, Hurley requested, “Am I just going to stop this medication to stop having to deal with these coding issues and these scary bills?”
— Matthew Hurley, 30, from Berkeley, California
A few years in the past, Matthew Hurley obtained the type of textual content individuals concern.
It stated: “When was the last time you were STD tested?”
Someone Hurley had just lately had unprotected intercourse with had simply examined optimistic for HIV.
Hurley went to a clinic and obtained examined. “Luckily, I had not caught HIV, but it was a wake-up call,” they stated.
That expertise moved Hurley to hunt out PrEP, shorthand for preexposure prophylaxis. The antiretroviral remedy drastically reduces the prospect of getting HIV, the virus that causes AIDS. The remedy is 99% effective at defending individuals in opposition to sexual transmission when taken as prescribed.
Hurley began PrEP and all was nicely for the primary 9 months — till their medical health insurance modified and so they began seeing a brand new physician: “When I brought PrEP up to him, he said, ‘What’s that?’ And I was like, oh boy.”
Hurley, who’s a librarian, went into instructing mode. They defined that the PrEP routine they’d been on required each day tablets and lab work each three months to look out for breakthrough infections or different well being points.
Hurley was stunned they knew extra about PrEP than the doctor. The FDA authorised the primary drug, Truvada, back in 2012, and Hurley lives within the San Francisco Bay Area, a spot with one of many highest concentrations of LGBTQ+ individuals within the nation and a deep history of HIV and well being care activism. Hurley stated older mates and acquaintances who survived the AIDS epidemic shared the horror of residing via a time when there was no efficient therapy or medication for prevention. Deciding to take PrEP felt like an empowering solution to shield their well being and their group.
So Hurley pushed the physician, and after the doctor did his personal analysis, he agreed to prescribe PrEP.
Hurley obtained the care they wanted, however they needed to be the skilled within the examination room.
“That’s a big burden,” stated Beth Oller, a household drugs doctor and board member of GLMA, a nationwide group of LGBTQ+ and allied well being care professionals centered on well being fairness. “You really want someone you can just go in and talk [to] about your health concerns without feeling like you are having to educate and advocate for yourself at every turn.”
Oller stated many queer individuals have had negative experiences throughout well being care visits.
“I have a lot of patients who had not done preventive care for years because of the medical stigma,” she stated.
Billing Headaches
Clearing the entry hurdles to HIV prevention drugs was just the start. Hurley began receiving a string of payments for PrEP-related care. Blood take a look at: $271.80. Office go to: $263.
Again, Hurley was stunned. They knew — even when the billing workplace didn’t — that beneath the Affordable Care Act most non-public insurance coverage and Medicaid growth applications are required to cover PrEP and ancillary providers, like lab tests, as preventive with no price sharing.
The payments for physician visits and blood attracts piled up.
Hurley would attraction the invoice and get a denial virtually each time. Then, they’d attraction once more.
Hurley shared a sequence of attraction letters for one service, wherein the billing workplace acknowledged that blood work had been initially incorrectly coded as diagnostic. Once that was corrected, Hurley stated, the insurer paid for the service.
That may sound fast or straightforward to resolve, however Hurley stated it took “forever to get through the process.” They handled a minimum of six incorrect payments over a number of months. Hurley estimated they spent greater than 60 hours contesting the payments.
During that point, Hurley stated, the billing division “is continuing to send me emails and bills that are saying, You’re overdue. You’re overdue. You’re overdue.”
Fed up with the hassles, Hurley determined to discover a well being supplier (and billing workplace) higher knowledgeable about PrEP. They settled on the AIDS Healthcare Foundation. The care group there was capable of focus on the professionals and cons of various PrEP regimens and knew navigate the formulary for Hurley’s insurance coverage.
Hurley hasn’t gotten an sudden invoice since.
But siloing sexual well being care and PrEP off from main care hasn’t been excellent.
“I have multiple organizations that I have to deal with to get my holistic health dealt with,” Hurley stated.
A supplier doesn’t must be an HIV specialist, an infectious illness skilled, or a doctor to prescribe PrEP. The Centers for Disease Control and Prevention encourages main care suppliers to deal with PrEP like other preventive medications.
To keep away from a number of the complications Hurley confronted, attempt the following pointers:
1. Find Out if PrEP Is Right for You
The CDC estimates 2.2 million Americans may gain advantage from HIV prevention medication, however simply over 1 / 4 of that group have been prescribed them.
“Not enough people know about PrEP, and there are a number of people who know about PrEP but do not realize it’s for them,” stated Jeremiah Johnson, govt director of PrEP4All, a corporation devoted to common entry to HIV prevention and medicine.
According to the CDC’s medical pointers, PrEP could be prescribed as a part of a preventive well being plan to anyone who’s sexually active. It’s particularly really helpful for individuals who don’t use condoms constantly, intravenous drug customers who share needles, males who’ve intercourse with males, and folks in relationships with companions residing with HIV or whose HIV standing is unclear.
The overwhelming majority of PrEP customers are males. There are huge race, gender, and geographical disparities in the distribution of HIV and the populations taking the prevention drugs. For instance, primarily based on the patterns of recent an infection within the U.S., a gaggle that will profit from PrEP is cisgender Black women, whose gender identification aligns with their intercourse assigned at delivery.
2. Don’t Assume Your Provider Knows About PrEP
If your medical doctors aren’t nicely knowledgeable, begin by educating yourself. There are additionally medical pointers and knowledge you may share together with your supplier. Check your state or native well being division for a how-to information for prescribing PrEP. For instance, the New York State Department of Health AIDS Institute has data for providers.
The CDC also has PrEP guidelines, however most of the company’s web sites coping with LGBTQ+ well being are in flux. Under the Trump administration, some HIV/AIDS sources have been taken down from federal web sites. Others now have headers saying: “This page does not reflect biological reality and therefore the Administration and this Department rejects it.”
3. Get Lab Work In-Network
Johnson stated Hurley’s expertise with billing errors is widespread. “The lab expenses in particular end up being very tricky,” Johnson stated.
For instance, a health care provider’s workplace might mistakenly code the lab work required for PrEP as a diagnostic test as a substitute of preventive care. Patients like Hurley can find yourself with a invoice they shouldn’t should pay. If your physician’s workplace is making errors, share the PrEP billing and coding guide from NASTAD, an affiliation of public well being officers who administer HIV and hepatitis applications.
Try to get your lab work accomplished in-network. If the lab is out-of-network, Johnson stated, it may be tough to attraction.
If the payments maintain coming, attraction them. And in case you can’t resolve the dispute, Johnson stated, file a grievance with the company that regulates your insurance coverage plan.
4. Look for Ways To Save
There are totally different sorts of PrEP. There are lower-cost, generic variations of Truvada, for instance, bought as emtricitabine/tenofovir disoproxil fumarate, usually shortened to FTC/TDF. Newer PrEP medication Apretude and Yeztugo have record costs within the 1000’s of {dollars}. Check your insurance coverage formulary and ask your physician to prescribe drugs your plan will cowl.
With many well being care premiums dramatically rising and thousands and thousands susceptible to dropping Medicaid protection, many individuals might go with out medical health insurance this 12 months. Drug producers corresponding to Gilead and ViiV have help applications for qualifying sufferers. If you need to pay out-of-pocket, prescription worth comparability web sites, like GoodRx, may also help you discover the pharmacies with the most cost effective worth.
5. Consider Telehealth
Telehealth is an increasingly popular possibility in case you don’t reside close to an affirming supplier or are in search of a extra non-public solution to get PrEP. In 2024, roughly 1 in 5 individuals on PrEP used telemedicine. Online pharmacies like Mistr and Q Care Plus provide PrEP with out an in-person appointment, and lab work could be accomplished at residence. Some telehealth choices have methods to lower the cost in case you’re uninsured.
Telehealth also can broaden the variety of medical doctors who’re able to prescribe PrEP. And some sufferers say talking with a distant supplier appears like a safer setting to speak about sexual well being. “They’re in the comfort of their own bedroom or living room but can interface virtually with a provider. It can open up a lot of doors for honesty and trust,” stated Alex Sheldon, govt director of GLMA.
6. Seek Out Affirming Care
GLMA created the LGBTQ+ Healthcare Directory, a searchable database of well being care suppliers throughout the nation who determine as queer-friendly. As Hurley found, residing in a significant metro space is not any assure your physician is updated on LGBTQ+ well being care.
Ask locals you belief for suggestions. You is likely to be stunned to search out good choices close by.
Health Care Helpline helps you navigate the well being system hurdles between you and excellent care. Send us your difficult query and we might faucet a coverage sleuth to puzzle it out. Share your story. The crowdsourced undertaking is a joint manufacturing of NPR and KFF Health News.
