(Oona Zenda/KFF Health News)
When Matthew Hurley was looking to take PrEP to prevent HIV, the doctor hadn’t heard of the medicine, and when he finally did prescribe PrEP, the bills sent to Hurley were expensive … and wrong. “I decided to write in because the process was really super frustrating.” At one point, Hurley asked, “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 couple of years ago, Matthew Hurley got the kind of text people fear.
It said: “When was the last time you were STD tested?”
Someone Hurley had recently had unprotected sex with had just tested positive for HIV.
Hurley went to a clinic and got tested. “Luckily, I had not caught HIV, but it was a wake-up call,” they said.
That experience moved Hurley to seek out PrEP, shorthand for preexposure prophylaxis. The antiretroviral medication greatly reduces the chance of getting HIV, the virus that causes AIDS. The therapy is 99% effective at protecting people against sexual transmission when taken as prescribed.
Hurley started PrEP and all was well for the first nine months — until their health insurance changed and they started seeing a new doctor: “When I brought PrEP up to him, he said, ‘What’s that?’ And I was like, oh boy.”
Hurley, who is a librarian, went into teaching mode. They explained that the PrEP regimen they’d been on required daily pills and lab work every three months to look out for breakthrough infections or other health issues.
Hurley was surprised they knew more about PrEP than the physician. The FDA approved the first drug, Truvada, back in 2012, and Hurley lives in the San Francisco Bay Area, a place with one of the highest concentrations of LGBTQ+ people in the nation 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 through a time when there was no effective treatment or drugs for prevention. Deciding to take PrEP felt like an empowering way to protect their health and their community.
So Hurley pushed the doctor, and after the physician did his own research, he agreed to prescribe PrEP.
Hurley got the care they needed, but they had to be the expert in the exam room.
“That’s a big burden,” said Beth Oller, a family medicine physician and board member of GLMA, a national organization of LGBTQ+ and allied health care professionals focused on health equity. “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 said many queer people have had negative experiences during health care visits.
“I have a lot of patients who had not done preventive care for years because of the medical stigma,” she said.
Billing Headaches
Clearing the access hurdles to HIV prevention medicine was just the beginning. Hurley started receiving a string of bills for PrEP-related care. Blood test: $271.80. Office visit: $263.
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, as preventive with no cost sharing.
The bills for doctor visits and blood draws piled up.
Hurley would appeal the bill and get a denial almost every time. Then, …