News » AIDS

Are You Being Unfairly Charged for PrEP? Here's What You Should Do

by Kilian Melloy

EDGE Staff Reporter

Saturday February 5, 2022
Originally published on February 5, 2022

Are You Being Unfairly Charged for PrEP? Here's What You Should Do
  (Source:Getty Images)

In theory, HIV testing and PrEP should be available to you without cost-sharing — that is to say, being preventive care, these things should be free of charge. But in real life, that's not always the case. Sometimes, people are still charged for PrEP, and the bills can be expensive.

That's a matter of concern for Carl Schmid, the founder and executive director of the HIV+Hepatitis Policy Institute, which advocates on behalf of (and sometimes directly assists) people in need of such preventive care.

"We always have roadblocks with insurance," says Schmid, who is also a consumer representative to the National Association of Insurance Commissioners

Testing and PrEP are not the only forms of preventive care that are sometimes charged to patients when they should be free, Schmid tells EDGE. "There's been recent problems with birth control as well. And you know, that's another preventive service that you should be able to get for free. Women were complaining that they weren't able to get it." To address that problem, "some powerful senators had to get involved, and then the federal government had to issue a new directive to the plans" as a reminder of their responsibilities toward patients.

Birth control, of course, has been around for decades, whereas PrEP is relatively new. So in a way, it's not a surprise if people needing PrEP don't have a completely problem-free experience getting the treatment covered. However, for many private insurers, coverage of PrEP without cost-sharing is a matter of law under the Affordable Care Act (ACA).

Schmid shared a PowerPoint with EDGE that lays out the basics, noting that the "Affordable Care Act requires non-grandfathered individual and small group plans to cover preventive services with no cost-sharing" — a directive that was reinforced as recently as January of 2021, when "All essential Health Benefit Plans" were required to "cover PrEP without cost-sharing."

That coverage isn't just supposed to cover the cost of the drugs; it's also supposed to cover the cost of the "ancillary services, [meaning] the labs, the doctor's visit," Schmid notes.

But, Schmid explains, "the biggest problem that I first saw was that [insurance companies] are not displaying" the relevant information that would let patients know that testing PrEP is supposed to be provided to them without cost.

"A plan has a list of drugs that they cover, called the plan formulary," Schmid explains, "and it has different tiers. These should all be on that preventive drug tier, and we're finding that that's not the case."

One reason, Schmid reckons, is that there may be some confusion around the fact that Truvada is used not only as a preventive treatment but also to keep people living with HIV in viral suppression, which helps ensure that they won't transmit the virus to others.


Another issue, Schmid points out, is that not everyone on PrEP is using generic medications. "They may be taking Descovy," Schmid says as an example of the problem, "and people are getting charged for that, but the way the rules are written, if your provider says you need to be on Descovy, then that brand name should also be free for the patient."

Even if a patient takes a generic drug for PrEP, "who knows the name for generic Truvada?" Schmid asks. "I can't even pronounce it! And who would look it up?"

Sometimes, the patients can be confused by the information insurers provide.

"Every plan has a different name," Schmid noted. "Some of them say ACA meaning Affordable Care Act. Some of them say Prevention. Some of them say Phase Zero; some of them are Tier One. Some of them are Tier Seven." And, as anyone who has had to submit billing information to an insurance company knows, "you have to know the code."

"There's a key at the beginning of the formulary that says what the preventive medicines are," Schmid added. However, he adds, "There are lots of inconsistencies from plan to plan, from insurer to insurer, and not all of them are not putting them on the right care. So that's the biggest problem."

The Solutions for Obtaining Cost-Free PrEP

"First of all, we need to make it easier to let people know that it is available for free," Schmid outlines. "I hear complaints from people saying that they're still being charged, and so we have to file appeals with the insurer, and then we sometimes have to go to the insurance regulator in each state, as well — the insurance commissioner."

Schmid shares how at the end of 2021, "California's Insurance Commissioner Ricardo Lara released a bulletin notifying health plans regulated by the by the California Department of Insurance that they are required to cover all PrEP drugs and related clinical services without cost-sharing — including the newly approved injectable PrEP."

On a smaller scale of day-to-day efforts, Schmid says, "We've been trying to help people out and get them refunds."

Schmid summarizes: "We just need to make it easier for patients because we want them to get PrEPed."

To that end, consumers who have been overcharged can also take action independently.

"I would encourage people to first work with their doctors, and they could file an appeal for them," Schmid said. "I would also [advise people to] go to your AIDS service organization in your area because they're familiar with this."

Whether going it alone or with the help of a physician or an AIDS organization, when it comes to the actual process of correcting the situation, "I would encourage them first to file an appeal with their plan and then if you're not successful, write to your insurance commissioner," Schmid detailed. "All the insurance commissioners are all online."

Schmid also recommended PrEP4All as a resource.

"I don't know if you're familiar with their website, but they [list] ways on their website to file complaints as well.

"And I'll be glad to help, too," Schmid added. That is, after all, what the HIV+Hepatitis Policy Institute does.

Kilian Melloy serves as EDGE Media Network's Associate Arts Editor and Staff Contributor. His professional memberships include the National Lesbian & Gay Journalists Association, the Boston Online Film Critics Association, The Gay and Lesbian Entertainment Critics Association, and the Boston Theater Critics Association's Elliot Norton Awards Committee.