June 14, 2020

Utahns sound alarm on prescription cost hikes through copay accumulator programs

By Turner Bitton

When Daniel was 24 years old, he found out he had HIV.

“I was finishing off a few years of bad decisions and a lot of self-hatred. Finding out I had HIV was a kick in the balls. I was scared; I heard a lot of stories about people who died in the early days and I was so afraid,” said Daniel, who asked The West View to protect his privacy by using only his first name.

That was the mid-1990s, and a lot has changed since then. Daniel moved to Utah, got his education, and a job that he loves. He has been living in Salt Lake City ever since.

Daniel’s medication regimen is strict – and expensive. His medication has allowed him to live a normal life and so he is very dutiful about making sure he follows his doctor’s orders.

Like many people with chronic health conditions, Daniel’s medication costs him almost $1,500 per month, and he depends on a manufacturer’s co-pay card to offset the cost. The co-pay card has made it easier for Daniel to afford his medication, because it has allowed him to count the co-pay card toward his deductible.

Until January 1st, that is.

Daniel found out that his insurance company is implementing a “co-pay accumulator program.” Under this program, instead of applying the value of his manufacturer co-pay card to his deductible, his insurance company will now require him to pay for his medication, completely out-of-pocket. “I’m having to figure out how I’ll keep paying my rent and stay on my medication.”

Even worse, Daniel says, is that he was completely blindsided by the change. Insurance companies aren’t required to notify their subscribers about the change in policy. In fact, the Trump administration proposed a rule that would go into effect in 2021 and allow all insurance companies to adopt such policies — a worrying concern for patient advocates like Teighlor Kodel, a case manager at the Utah AIDS Foundation.

“I have clients who are facing these huge increases in costs for their medicine. They’re having to choose between medicine and other expenses because even though they have jobs, they can’t afford $2,000 a month” she said. Adding that many of her clients don’t qualify for direct assistance through the state’s Ryan White Program, which helps people living with HIV and AIDS.

Co-pay accumulators are a relatively new phenomenon, designed by insurance companies to limit the use of brand name medications, which are generally more expensive. The damage, advocates for patients say, will not be limited to people living with HIV and AIDS but all people with rare or chronic illnesses, such as Hepatitis C and cystic fibrosis. These illnesses often require medications that do not have a generic alternative.

The financial impact is so great for vulnerable patients that states across the country are taking action. As of the time of writing, four states have banned co-pay accumulator programs: Arizona, West Virginia, Illinois and Virginia. A similar effort led by Rep. Ray Ward (R-Bountiful) failed during the 2020 legislative session. House Bill 214 would have banned the implementation of co-pay accumulator programs in Utah. The measure failed after vigorous opposition from Utah’s health insurers.

The implementation of copay accumulator programs represents a significant cause of concern for Utahns. Despite concern about the spread of such policies, Daniel expresses optimism. “I think if people like me keep sharing our stories, then something will happen. Asking people to pay thousands of dollars more for our meds is not going to work.”

 Copay_Accumulator_Fact_Sheet.jpgA graphic provided by the National Alliance of State and Territorial AIDS Directors (NASTAD) illustrates the impact of a copay accumulator program on a patient who requires pre-exposure prophylaxis medication (PrEP) to prevent the transmission of HIV.