Medications for people with chronic illness are lifesaving, said Keri King, the mother of Taylor King, who has cystic fibrosis.
But with high deductibles and even higher prescription drug costs, many chronic illness patients would be unable to afford the medication they need to live without copay assistance, Keri King said. Copay assistance, she said, helps make life somewhat more affordable and gives chronic illness patients, like Taylor, the means to fulfill their dreams.
Copay assistance is when nonprofits or medical companies pay a portion, if not all, of a deductible or out-of-pocket maximum on an insurance plan for a chronic illness patient.
In recent years, some insurance companies have implemented a policy known as a copay accumulator. It prevents patients from receiving help from nonprofits or medical companies. Those funds no longer go toward a patient’s deductible or out-of-pocket maximum.
King, who lives in southern Utah, said insurance companies “have blood on their hands.” When patients with chronic illnesses have to go off their medications their health becomes more at risk and is “potentially deadly.”
On Tuesday, the final day of committee hearings for the Utah Legislature, SB184, a bill that would eliminate copay accumulator policies, was held in the House Business and Labor Committee. It will not reach the House floor for consideration this year. It passed in the Senate earlier 21-2.
In the House committee hearing, Sen. Curt Bramble, R-Provo, the bill’s sponsor, explained what the legislation would do.
“If there is a benefit that is paid into a health care system on behalf of a patient, the patient should get credit for that benefit,” he said. According to the bill text, the policy would not apply to self-funded plans.
Bramble said insurance companies are “double dipping,” getting money from vulnerable patients and the organizations who are trying to help those experiencing chronic illness.
The bill, he has said, would end a loophole and help patients pay for expensive drugs.
Timothy West, a doctor at the Rocky Mountain Multiple Sclerosis Clinic in Salt Lake City, assisting about 4,000 patients across the state, said in the hearing, “A lot of our patients become permanently disabled in their 40s, sometimes younger if they aren’t given the right treatment.”
When a patient is on the correct medicine it can “keep (patients) safe, keep them working, keep them paying taxes, and keep them taking care of their families.”
The copay accumulator policy, he said, forces many of his patients to decide if they should pay their rent or pay for the medication that would help them the most.
Several community members spoke in favor of the bill at the committee hearing, including a pharmacist, patients and parents of patients.
But Stephen Foxley, of Regents BlueCross BlueShield of Utah, voiced concerns, as did other insurance companies. Insurance prices, he said, could rise if the policy passes.
If there is a cheaper substitute for medication, Foxley said, insurance companies should cover those rather than a more expensive option.
Of course, he said, there are exceptions where less expensive substitutes may have different effects on a patient. Foxley cited Washington state’s bill, SB5610, which passed into law in 2022, as an example of legislation that considers those exceptions.
Because of the lack of flexibility and the potential fiscal impact, the committee voted to hold the bill. Rep. Brian King, D-Salt Lake City, was the only representative to vote against holding the bill.
Bramble said the legislation is designed to allow substitutions. It allows insurance companies the flexibility to “set their benefits the way they choose.”
Though Utah lawmakers did not advance the bill, a policy change could come through the courts.
Carl Schmid, the executive director of the HIV and Hepatitis Policy Institute, is helping represent 42 million people nationwide experiencing copay accumulator issues relating to chronic illnesses in a federal lawsuit challenging the rule to allow health insurance companies to avoid counting copay assistance toward patients’ out-of-pocket obligations.
He told the Deseret News that he hopes the lawsuit, filed in Washington, D.C., will “force the government’s hand” and make it acknowledge that copay accumulator policies go against regulations in the Affordable Care Act’s 2021 Notice of Benefit and Payment Parameters.
Schmid said the Biden administration has had plenty of time to address the policy, but hasn’t. The administration, he said, advertised that it was going to make prescription drugs more affordable, but “they’re actually making drugs more expensive.”
Correction: An earlier version incorrectly identified Dr. Timothy West as a doctor at LDS Hospital. He is a doctor at the Rocky Mountain Multiple Sclerosis Clinic in Salt Lake City. Also, Rep. Brian King, a Democrat, was misidentified as a Republican. The last name of Carl Schmid, executive director of the HIV and Hepatitis Policy Institute, was also misspelled as Schmitt.