SALT LAKE CITY — Holding her newborn in her arms, doctors told Jen Hepworth her daughter, Penny, had only 38 years to live.
"She was my first baby and I'm holding this brand new infant and thinking that she's just been given this terrible death sentence," said Hepworth.
Now, at 9 years old, Hepworth's daughter Penny takes what she said is a miracle drug called Trikafta, giving her life and keeping her out of the hospital.
Only, the drug costs $311,000 per year.
"Every three years we count on $1 million dollars and it's just not something we have to spend," said Hepworth.
Hepworth said thankfully, copay assistance programs run by nonprofits help with costs.
However, insurance companies like Hepworth's can opt in to something called a 'copay accumulator adjustment program,' which doesn't allow the assisted funds to count towards a patient's annual deductible or out-of-pocket maximum.
The programs have been banned in several other states, and mothers like Hepworth hope legislation proposed in the 2023 session will make it illegal in Utah as well.
"When we found out those copay assistance payments were not going towards our deductible anymore, it added one more layer of stress to our family that we really didn't need at the time," said Ashley Bowen, who has a 6-year-old son with a blood condition called Hemophilia.
Bowen says in 2019 her insurance company suddenly implemented the copay accumulator adjustment, putting them in debt to pay for her son Carter's Hemophilia medication, which helps stop uncontrollable bleeding.
"So this is life-saving medication our kids need and those options are being taken away from us by taking our copay assistance money, in addition to our high deductible programs or deductible money that we're paying," said Bowen.
Legislation proposed by State Senator Curt Bramle is still in preliminary stages, but Bowen and Hepworth hope it makes it to the floor.
"Insurance should not be more important to our legislators than patients," said Hepworth.
