Insurance coverage and other access hurdles can be overcome, but it might take work

When Truvada was first approved for PrEP in July 2012, the formal launch of the health insurance marketplaces through the Affordable Care Act was still a distant year and a half away. What activists wondered was whether insurers would cover it and what people without health insurance would do to access it.

What they learned was that even if someone could get their hands on a prescription for PrEP, there was no guarantee that they would be able to pay for it. Most Medicaid programs picked it up pretty quickly, though some instituted conditions that had to be met before a prescription could be filled. Private insurers also didn’t put up too many hurdles.

What slammed the door in peoples’ faces, however, were the out-of-pocket costs for those with insurance, and the income limitations on the medication assistance program designed by Truvada’s maker, Gilead, to help those without insurance.

“Yeah, that’s been a real problem,” says Bryan Bautista-Gutiérrez, PrEP Coordinator for Howard Brown Health Center in Chicago, though he thinks things are getting better now that more people have insurance and that the generosity of and knowledge about the assistance programs has gotten better.

In fact, Gilead’s co-pay program went from covering $200 per month of out-of-pocket costs to $300 this past October, and the income limit of their medication assistance program for the uninsured went from about $23,000 per year to about $58,000. Unfortunately, while Obamacare gave many more people access to health insurance, we learned the hard way that they often had many thousands of dollars in deductibles before their pharmacy benefits would kick in, something Gilead’s program wasn’t designed to cover.

It’s the sticker shock that really rattles people, says Bautista-Gutiérrez.

“People thought they were getting health insurance and they didn’t know what to ask when they signed up,” he says. “We have patients who are paying $300 or $400 per month [for premiums] and [the plan] is still not covering it.”

It’s the lowest level plans in the exchanges, called a Bronze plan, that have the largest deductibles and co-pays, explains Courtney Multhern-Pearson, the Director of State and Local Affairs at the San Francisco AIDS Foundation. The plans, which range from Bronze to Platinum, have drastically different levels of out-of-pocket costs, but also have varying monthly premiums too. Mulhern-Pearson says that Bronze plans aren’t the best option for people wanting PrEP.

Employer-based plans can also let you down, however.

“I remember a young guy who had an employer-based plan and they were out-and-out refusing to cover PrEP,” she recounted. “We helped him and he ended up going back to the doctor for an appeal based on medical necessity.”

“There was another guy,” she adds, “who had an employer plan with insanely high deductibles.”

Fortunately, a non-profit foundation called the Patient Access Network now helps some people with high deductibles, though there is an income limit.

For people trying to pick a plan, Mulhern-Pearson says, it’s best to turn to an insurance agent or navigator for help, as the various aspects of a good plan are far from transparent and information can be really hard to find. For those who don’t have access to a navigator, Project Inform published a plan choice guide last November to help people in California choose an exchange-based plan. Though it is state-specific, most of the information would be useful to people no matter where they live. The AIDS Foundation of Chicago also provides a state-specific but helpful guide. (See Resources for the guides.)

Both Mulhern-Pearson and Bautista-Gutiérrez urge people to keep fighting and not give up.

“I can’t tell you the number of times people who were at high risk could have been on PrEP way before,” says Bautista-Gutiérrez.