UTAH (ABC4) – The minute Penny Hepworth was diagnosed with cystic fibrosis, her mother Jennifer became an expert on the condition and health insurance. 

“It’s not unusual for a parent with a child with cystic fibrosis to be on the phone with the insurance at the beginning of the year, an average of 30 hours a month,” said Jennifer Hepworth. 

After years of figuring out what worked best for her daughter, Jennifer came across a new problem, co-pay accumulator programs. 

“It’s a despicable program,” said Hepworth. 

Penny’s prescriptions cost about $25,000 a month. The drug manufacturer has a program that covers a big chunk of the costs, but a few years ago, her insurance company said that money would no longer go towards her deductible or out-of-pocket maximum. 

“It’s financially harmful to the patient and the family long term, if they can’t use it against the deductible or the out of pocket,” said Senate Majority Leader Evan Vickers. 

Sen. Vickers said Senate Bill 139 would require insurers include payments made on behalf of the patient be included in their deductible and out-of-pocket max. 

“If I could find a balance, that would allow patients that truly need the help, to be able to receive that, and at the same token, not break the bank or break the system, or really cause insurance premiums to go up, then I’m interested,” said Sen. Vickers. 

Vickers said part of that balance is allowing insurance companies to require a patient to use the generic or biosimilar first, unless they have a doctor give prior authorization for the name-brand drug. 

SB139 could save Hepworth’s family thousands of dollars a year, but in the end, Hepworth said it’s not about what her family saves, it’s about the people who can’t afford getting care because of co-pay accumulator programs. 

“They’re unable to give their children the health care that they need. Because it is so expensive and they no longer get the help that they had before,” said Hepworth. 

SB 139 is scheduled to be considered by the “Senate Business and Labor Standing Committee” Tuesday afternoon.