In 2015, Dave, 56, a project manager in the Midwest, watched his lover of 12 years die of AIDS-related complications. Unbeknownst to Dave, he says, the lover had been having sex outside the relationship for several years, had contracted HIV, and -- it's unclear whether he even knew he was positive -- was not treated for it until he landed in the hospital, deathly ill. Dave thinks he was spared his own HIV diagnosis because he and the lover had a sexless relationship for several years.
But, after the lover's death, Dave decided to be safe rather than sorry when he went back out there to play. "His death made me realize you never know what can happen, that people don't tell you they're positive, or they may not know themselves," says Dave, who asked not to be fully named since some of Dave's late lover's family and friends don't know the full story of his death.
So, in 2016, with his United Healthcare work insurance, Dave went on the HIV med Truvada (tenofovir/FTC) for pre-exposure prophylaxis (PrEP), which means taking the drug to prevent getting HIV. In his plan, his copay for Truvada was $35, but his deductible (before plan payment kicks in) was $3,600, and his Truvada cost $1,480 a month (about average for the drug).
So, through Gilead, which makes Truvada, he got a copay assistance card, which covered the cost of the drug. Better yet, his plan allowed him to count the $3,600 that Gilead paid for the drug toward his deductible. After that, he paid only the $35 copay. In 2017, it was the same situation, but with his copay going up to $85. "I'd rather it be $35, but it was still worth it to be more protected," he says.
Related: Paying for PrEP
Things changed late last year, when United Healthcare announced that it would no longer count copay card dollars on any drug toward members' deductibles. And it wasn't the only insurer to make this move.
Carl Schmid, deputy executive director of The AIDS Institute, a national advocacy group, says he has heard of several insurance plans and pharmacy benefit managers (PBMs) nationwide that are doing so, and shared with TheBody letters to members announcing as much from CVS Caremark, Express Scripts, and BlueCross BlueShield, among others. Schmid says similar changes have been announced by insurers for major employers, such as Walmart, Home Depot, and New Mexico public schools.
"This is bad for patients and public health," says Schmid, adding that he and other advocates intend to notify state attorneys general and insurance commissioners about it. "There's no transparency here. Patients didn't know about this during [Affordable Care Act (ACA)] open enrollment" late last year when they were choosing plans, he says.
It is impossible to know exactly how many plans nationwide are changing to that policy or how many patients -- or PrEP takers -- might be affected. But HIV prevention advocates say they're worried this could lead to people going off their PrEP -- and a rise in HIV transmissions. Explained Amy Killelea of National Association of State and Territorial AIDS Directors (NASTAD), an HIV advocacy group for state, city, and U.S. territory health departments, in an email:
Because the Gilead copay assistance program has an annual limit of $4,800, we're finding that if the copay assistance card isn't counted toward a consumer's deductible and out-of-pocket maximum, then that Gilead copay card limit can be hit pretty quickly, leaving the consumer on the hook for very expensive copayments/coinsurance.
This can often result in a "cost cliff" mid-year, where consumers pay $0 for their Truvada prescription for the first several months of coverage using the Gilead copay card, [then] hit the Gilead copay card maximum, and find out that they haven't come close to meeting the plan deductible because none of those copay card payments counted.
Now, they must pay hundreds of dollars (in some cases over $1,000) at the next fill just to get out of deductible. Even after that, they are still responsible for the remaining copayments/coinsurance every month until they hit the plan's out-of-pocket maximum, which [under ACA rules] is $7,350 in 2018.
So, now that Dave, for example, has already maxed out on his $4,800 cap from Gilead, he's looking at a personal share of $232 for his next month's Truvada fill, $1,677 for the following two months, then $414 after that until he fulfills his $4,000 deductible. He says he's currently looking at other ways of paying for his PrEP.
Those ways could include taking up Gilead on its offer to reimburse people's out-of-pocket expenses, applying for up to $7,500 of assistance from the nonprofit Patient Advocate Foundation, or even ordering generic Truvada from high-quality online pharmacies outside the U.S. That's all according to Damon Jacobs, creator and founder of the Facebook page PrEP Facts, where nearly 20,000 PrEP users commune and counsel on such issues.
Jacobs says that, compared with past incidents in which United Healthcare has appeared to try to block PrEP access by requiring preauthorization, for example, not that many people on PrEP Facts have complained about the copay card deductible issue so far. But, he notes, maybe that's because not that many have yet hit their $4,800 copay card max this year.
United Healthcare and other plans might appear stingy for doing this. But, according to James Krellenstein, a member of ACT UP-NY, ultimately the fault lies with Gilead for pricing Truvada so high in the first place. "They're charging 190 times what it costs to make Truvada," he says, basing that on his calculations that generic Truvada costs about $6 a month in developing countries (versus about $1,800 here in the U.S.). Gilead also raised the cost of the drug last year by more than 10%, he says -- three times faster than inflation.
With Tim Horn of Treatment Action Group, Krellenstein is part of the Fair Pricing Coalition, which last November sent a letter to Gilead, urging them to raise its copay card max to $7,150, the 2017 deductible max allowed under the Affordable Care Act.
Gilead has thus far refused to do so, says Krellenstein. "Instead, they're asking us to put activist pressure on the insurance companies" to continue counting the copay dollars toward deductibles, he says. "Pharma and insurance companies are like two elephants fighting, and when elephants fight, the grass gets hurt. And the patients here are the grass."
Krellenstein says that in principle he doesn't support copay cards. "They allow drug companies to increase prices with abandon and then blame insurance companies when they don't put the dollars toward deductibles. There has to be a more sustainable system in this country for drug pricing."
But, for the time being, he says, he has to support the cards in the interest of people living with, or at risk for, HIV.
For this story, TheBody put these questions to a rep at Gilead:
- What justified the recent Truvada price increase, and given that these price increases are now causing access restrictions, will the company commit to not increasing the price of its HIV drugs faster than inflation?
- Why won't Gilead increase the annual copay assistance limit to $7,150 a year (the 2017 ACA max for plan deductibles) for Truvada?
- Will Gilead commit to allowing patients who cannot access Truvada or other HIV drugs due to this change to procure drugs for free through the company's Medication Assistance Program (MAP)? If not, will the company allow patients to procure Truvada at the cost of production (less than $10 a month, per a 2016 study)? If not, what is Gilead doing to ensure that patients are able to remain healthy, despite the company's pricing practices?
The Gilead rep declined to answer all the questions, emailing instead: "As you know, we are a highly regulated company, and there are processes that we need to follow to stay compliant with these complex health care laws and rules. We need to establish our own independent processes that take into consideration appropriate factors to determine how to help people."
Meantime, Dave, that project manager in the Midwest, says that his monthly supply of Truvada just ran out. However, he's determined to find a way to stay on PrEP, adding that his doctor said he would try to talk to someone at United Healthcare on Dave's behalf.
"When my partner died, I realized I could be sexually active again," he says. "But I'm not gonna be stupid about it. I wanna stay on PrEP. It's better to have that extra safeness."