State Rep. Carrie Rheingans (D-Ann Arbor), at podium, joins representatives from advocacy groups for rare and chronic disease patients at a press conference on June 6, 2023. | Photo by Lily Guiney
Rep. Carrie Rheingans (D-Ann Arbor) announced at a Tuesday press conference that she is poised to introduce legislation to protect patients using copay assistance funds to afford their medications.
Rheingans was joined at the state Capitol by representatives from advocacy groups for rare and chronic disease patients, some of whom spoke about their experiences being forced to pay high deductibles after their insurance providers declined to recognize their copay assistance.
Copay assistance programs, which can be provided by drug manufacturers or third-party organizations like nonprofits, help patients afford expensive prescriptions by covering a portion of the patient’s deductible. Rheingans said that a growing number of insurance companies are adopting mechanisms called copay accumulator adjustment programs, which prohibit the use of copay assistance money in meeting a patient’s deductible.
“Insurance companies and pharmacy benefit managers are using copay accumulator adjustment programs that prohibit the value of this copay assistance from applying toward a patient’s deductible or out of pocket maximum for the year,” Rheingans said. “And these plans accept the copay assistance funds without crediting it toward that patient’s out-of-pocket cost.”
Losing that copay assistance for out-of-pocket costs can lead to crippling financial stress for patients who suffer from rare or chronic diseases that often require pricey medications in order to live a regular life.
Emily Schaller, a cystic fibrosis patient and founder of the awareness organization Rock CF Foundation, said that when an accumulator adjustment was added to her insurance plan, it made her liable for thousands of dollars that she thought would be covered by her copay assistance program.
“In 2021, without any notification, Blue Care Network enacted a copay accumulator adjustment on my insurance plan, meaning the copay assistance from a life saving drug was no longer counted towards my deductible or out of pocket,” Schaller said.
Schaller began taking Kalydeco, a breakthrough cystic fibrosis drug, when it was approved by the U.S. Food and Drug Administration in 2012. She said it changed her life and allowed her to live without constant hospitalization and lung episodes, but it came with a $6,900 copay. Copay assistance allowed her to access the drug until 2021, when the accumulator adjustment was added to her plan.
“I was told on top of the Kalydeco, I had copays of $12,000, $5,500, $5,600 and $4,000 for my other CF medications,” Schaller said. “I was in tears for several weeks trying to figure out how to navigate and digest that.”
Rheingans’ bill, which is slated to soon be read in, aims to prevent what happened to Schaller from happening to other patients in Michigan, something she said has gained bipartisan attention in the legislature. A version of the same bill was introduced in 2021 by former State Rep. Bronna Kahle (R-Adrian), but stalled in the then Republican-led Senate. Democratic lawmakers now make up a slim majority of both the Michigan House and Senate.
“I’m confident that we’ll be able to pass this here in Michigan and have bipartisan support,” Rheingans said.
Eighteen states, alongside Puerto Rico and Washington, D.C., have similar legislation protecting copay assistance users.
Cathy Peterson, a financial navigator for the Michigan Society of Hematology and Oncology, said that passage of the bill in Michigan would help patients better handle the process of getting life-saving medications without going into debt. She said that two of her patients are currently facing lack of access to cancer treatment medications due to copay accumulator adjustments.
“These two experiences are not uncommon, but examples of a growing trend that shifts more and more out of pocket costs to patients,” Peterson said. “The truth is when insurance companies don’t count patients’ copay assistance, it becomes more likely every day that these patients will be forced to go without the medicine that they need to live.”
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