Promoting his bill to keep copay bills from skyrocketing for chronically ill patients, Sen. Curt Bramble shared the story of a close friend who died after he could no longer afford his medication.

“He contracted a very rare cancer, and because there was no copay accumulator, his insurance company denied him the lifesaving treatment. He died of the cancer prematurely,” said Bramble, R-Provo.

Unfortunately, this scenario is one of many similar stories. People suffering from chronic illness are occasionally unable to seek treatment because an insurance company doesn’t accept copay assistance, said Brook Carlisle, the Utah government relations director for the American Cancer Society. This can lead to emergency visits and sometimes, like Bramble’s friend, death.

Bramble has drafted a bill that he will sponsor this session eliminating copay assistance adjustment policies.

Copay assistance allows nonprofits and medical companies to pay a portion, if not all, of a deductible or out-of-pocket maximum on an insurance plan so that patients don’t have to pay thousands of dollars at one time, Bramble said.

In many cases, adjustment policies cause money from copay assistance to go directly to insurance companies, no longer counting toward a chronically ill patient’s deductible or out-of-pocket-maximum.

Insurance companies claim to use the copay assistance to lower costs for all those who use insurance. This, however, puts a community that is already facing medical struggles at a higher risk of medical issues or even death, said Carlisle.

In a press conference Friday at the state Capitol, Bramble announced a bill he will sponsor in the Utah Legislature’s 2023 session. “The purpose of copay assistance is to allow patients to get medications ... that they require,” he said.

The purpose, Bramble said, is not to go to the “bottom line” of insurance companies or offset premiums, but to help those who are actively in need, giving them access to life-saving medications.

Bramble’s bill aims to address the copay assistance adjustment policy issue. A current draft of the bill would require pharmacy benefit managers to include amounts paid “on behalf of the enrollee by another person” when calculating a deductible or out-of-pocket maximum.

In 15 other states and Puerto Rico similar legislation has been proposed, according to the National Conference of State Legislatures. Utah, Bramble hopes, will be the next.

Several others shared their stories in the briefing. Jen Hepworth described her family’s experience navigating chronic illness and the toll of copay assistance and accumulator adjustment policies.

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Jen Hepworth, whose daughter, Penny, 9, has cystic fibrosis, speaks about potential upcoming legislation on reducing the cost for prescription drugs for chronic illnesses at the Capitol in Salt Lake City on Friday, Jan. 20, 2023. | Laura Seitz, Deseret News

Hepworth told the story of her 9-year-old daughter, Penny, who was diagnosed at 3 weeks old with cystic fibrosis, a life-limiting inherited disease.

“She is able to go to school and she is able to do all the things that a 9-year-old girl should be able to do, and that is because of a $311,000-a-year drug,” Hepworth said.

The drug, Hepworth said, is a miracle and “keeps my daughter alive.”

She expressed her gratitude for insurance, but explained when the accumulator program came into play, her family began paying $9,000 a year out of pocket.

“To keep my 9-year-old little girl going to school and out of the hospital we have had to sacrifice so much to be able to afford to keep her living her best life,” Hepworth said.

Afterward, Hepworth described the impact that the adjustment policies for copay assistance have on people affected by chronic illnesses.

She fears people who cannot afford their deductible are “going to die.”

Prescription drugs for chronic illnesses often save lives. For many suffering from chronic illnesses, there are no generic equivalents available, allowing companies to keep prices high, according to the All Copays Count Coalition.

Penny Hepworth, 9, daughter of Jen Hepworth, has cystic fibrosis. | Hepworth Family photo

Ashley Bowen represented the hemophilia community, sharing her son’s story.

At just 2 weeks old, her son had to be tested for hemophilia after a routine appointment led to a heel prick that would not stop bleeding.

Since then, Bowen’s son has been in and out of the hospital for issues relating to hemophilia. She described copay assistance as a “stress relief for us, relieving that financial burden of the cost of medication.”

Bowen said she discovered the change in her insurance company’s policy while refilling her son’s prescription.

“That was a really tight financial year for us,” she said. The family had to reassess their budget to try and find a way to get by.

“These companies are taking our copay systems and our deductible and then double dipping,” Bowen said. “It needs to stop.”

Ashley Bowen, a parent, speaks about potential upcoming legislation on reducing the cost for prescription drugs for chronic illnesses at the Capitol in Salt Lake City on Friday, Jan. 20, 2023. | Laura Seitz, Deseret News