Medications that prevent HIV — along with the necessary doctor's visits and lab tests — are supposed to be fully covered by most insurance plans under the Affordable Care Act.

• Patients and advocacy groups tell Axios they're often not.

Why it matters: Studies show HIV pre-exposure prophylaxis, often called PrEP, is more than 90% effective in preventing the transmission of HIV.

• But the brand-name version of the daily pill costs upward of $20,000 a year, and billing problems that shift costs to patients lead many who would benefit to opt out, advocates say.

"You hear stories all the time," Jeffrey Crowley, director of the Infectious Diseases Initiative at the O’Neill Institute and a former director of the White House Office of National AIDS Policy, told Axios.

• "They've been on PrEP and then all of a sudden, there's a new obstacle," he said. "They need to get prior authorization or they used to get their meds for 90 days and now they can only get them for 30 days. All of these hassle factors cause people to fall off."
• Or as in the case of patients like Cambridge, Massachusetts resident Michael Brazile, they get fully covered PrEP treatments — along with a surprise bill for lab services required to obtain the drug.

A quick primer: The FDA in 2012 made Gilead's Truvada the first approved drug for HIV prevention in uninfected adults. There's now a generic version, plus another form of PrEP known as Descovy.

• Since they are intended for those who are HIV-negative but at high risk of acquiring the virus, lab testing is a prerequisite, usually in person.
• In 2019, the U.S. Preventative Services Taskforce recommended PrEP as an effective method of preventing HIV, meaning health plans had to make it available at no cost to patients under the Affordable Care Act starting in January 2021.

What's happening: Even so, patients are often hit with bills for the drug itself, for office visits, or lab work.

• Anthony Cantu, 31, who works in a health clinic in San Antonio where he counsels patients about PrEP, started the drug himself last summer. He got billed $374 for lab services connected with PrEP in October 2021 by Blue Cross Blue Shield of Texas. It was the first of several bills.
• After months of appeals and filing a complaint with the Texas Department of Insurance, his case was resolved. That is, until he recently got another bill for $187 for PrEP-related lab services.
• In a statement, the insurer said it "is committed to providing its members with equitable health care, including access to PrEP medication and clinical support related to PrEP," but did not specifically address concerns about instances where it wasn't covered
• As Axios reported earlier this year, Peter Sacco, 28, of Washington, D.C., was billed for copays for clinic visits and lab work associated with monitoring his health for a generic Truvada prescription and had difficulties appealing.

By the numbers: There isn't good data about how often this happens, Carl Schmid, executive director at HIV + Hepatitis Policy Institute, told Axios.

• But "I'm helping six people right now and we have to go to insurance commissioners every time?" Schmid said. "There really is a problem. With the ACA it's supposed to be seamless and that's not what's happening."

More federal enforcement and penalties for non-compliance are needed to make a meaningful change rather than state-by-state complaints, Schmid said.

The other side: Insurers say the problem often is physicians aren't properly coding their visits as preventative, but when that happens it can be fixed on the backend, said AHIP Spokeswoman Kristine Grow.

• Some plans are engaged in education campaigns with providers to appropriately submit claims, Grow said. And "health insurance providers are engaging with patients and their providers who have questions or concerns when they receive an unexpected bill and are working swiftly to address them," she said.

Yes, but: "I am sympathetic to that. But once [insurers] know about that, it should get fixed. And it keeps happening," Katie Keith, a health law expert at Georgetown University who has written about this issue, told Axios.

• "I'm much more deeply troubled by, even when you're telling your plan or your providers to tell your plan that this should be covered, that people are having to jump through such incredible hoops," she said.

What to watch: An injectable form of PrEP was approved by the FDA, one of the multiple longer-lasting forms of the drug coming to market aimed at boosting compliance, Crowley said. It's unclear what will happen with coverage.