This is the second in a 5-part series of reports on copay accumulators by FOX 13 investigative reporter Robyn Oguinye. Click here to read the previous installment.
EAGLE MOUNTAIN, Utah — Penny and Sadie Hepworth are yin and yang like many sisters close in age. Sadie is animated, while Penny is a quieter force.
But Penny isn’t like most 11-year-olds — her parents can attest to that.
“We got our world rocked pretty soon after she was born,” says Penny’s mom Jen Hepworth.
Penny has cystic fibrosis, a genetic disorder that causes the body to produce thick mucus that clogs airways and damages the lungs.
“It’s the scariest thing that you can imagine because each lung infection, each cold can lower her lung function. And if it’s due to scar tissue, that’s not lung function she can regain,” said Jen.
Penny takes 20 pills a day, an improvement from the 30 pills a day she used to take.
Her parents, John and Jen Hepworth, attribute the medication Trikafta to her well-being.
“Trikafta really opened up to 90% of the people with cystic fibrosis. They can use this modulator to treat their underlying causes and allow them to live a much more healthy life and add decades to their life,” said John.
The price tag for Trikafta: $26,000 a month.
Without insurance and assistance from pharmaceutical companies, the cost per year for Trikafta and Penny’s other medications would be close to $500,000.
For a while, the Hepworths were getting assistance from the pharmaceutical company to pay for Penny’s treatments.
But that assistance eventually stopped.
“In the past, we would fill a medication once and that would completely fill our deductible for insurance, and as that went on throughout the year, it would be a lot easier for us to pay for all of the different medications and doctor visits because it goes into a cost-sharing mechanism,” said John. “The first year of the copay accumulator, we went into the same scenario. We got the medication, we said ‘OK, now we should be in the clear,' but then the bills kept coming.”
That copay accumulator John mentioned is what kept the bills coming.
A copay accumulator is when insurance companies and pharmacy benefit managers — or PBMs — keep the copay assistance meant for a patient and use it for more profit.
The assistance a patient would be receiving does not count toward their deductible or out-of-pocket costs.
“That took us from a situation where we had medical expenses that we were able to more or less keep up, to 'How are we going to come up with this extra $10,000 for this year?'” said John. “So we just started putting everything on credit cards because we can’t not get the medication. There’s not a cheaper version, there’s not an alternative. There’s nothing that we can do except buy this medication so that our daughter can live.”
FOX 13 News first met Jen Hepworth during the 2023 Legislative session. She was at the state capitol advocating for the Utah bill that would ban copay accumulators.
The bill ultimately failed in 2023, as it did this year and other times in the past.
“When the insurance lobbyists come out, they talk about how it’s going to increase the cost of business owners across Utah, which is factually inaccurate,” Hepworth said. “Studies have been done and shows that it has not done that for any of the 19 states that have already enacted a ban.”
And she is right — here’s a map from the All Copays Count Coalition.
The states in green have all passed legislation banning copay accumulators. Those in yellow, including Utah, are states that have introduced legislation that would ban copay accumulators, and those in blue have had no legislation.
The chart below from the AIDS Institute illustrates the average change in premiums for states with and without accumulators.
The blue line represents premiums in states with no accumulator laws and the orange represents states with accumulator bans.
There’s been no significant rise in premiums in those states that indicate getting rid of accumulators would cause premiums to increase.
FOX 13 News talked to groups in two other states to see how they were able to pass their copay accumulator ban legislation: the Arizona American Cancer Society and the New York State Bleeding Disorders Coalition.
“The insurance industry does not like this legislation at all,” said Brian Hummell with Arizona’s American Cancer Society. “They believe that there is a benefit to having a copay accumulator and their benefits offering it, however, is anti-patient.”
Hummell said Arizona passed its legislation almost immediately when it was first introduced in 2019. The charge was led by then-Senator Nancy Barto, the chair of the Health and Human Services Committee.
He believes Barto’s strong record and a narrow niche in patient protections and patient rights helped the bill pass with ease.
“She viewed this very much as a contract between the insurance provider and the patient, and that if a patient had a thought or feeling that they had the expectation of a benefit within the insurance plan, that they should have access to it,” said Hummell.
New York’s bill, on the other hand, took longer to pass.
They also first introduced copay accumulator legislation in 2019.
Jessica Graham with New York’s Bleeding Disorders Coalition said the offices the coalition met with didn’t understand the ins and outs of high deductible plans.
The coalition’s objective included helping lawmakers understand deductibles as they related to patient obligations, which led to changes to the bill’s language over a multi-year period.
“What we would tell them is we want patient assistance to actually assist patients and when there’s policies like copay accumulators and those sorts of things, it pretty much negates the assistance that’s available to patients,” said Graham. “The amendments that we saw with the New York bill, I know that they’ve seen those in other states that have passed similar legislation.”
The bill finally passed in 2023.
For Penny, who just turned 11 years old, life is as normal as it can be for a kid with cystic fibrosis.
Jen and John are hoping Utah can make changes soon so that there are no barriers to keep her from having many more birthdays — birthdays better spent out of the hospital.
“It’s so infuriating and devastating when all we’ve done for 11 years now is try to keep this kid alive and happy and thriving,” said Jen. “And we have this assistance and they say, ‘No, no, it is more important to us to have an increase in our profit than it is for your daughter to stay alive.’”