This is the third in a 5-part series of reports on copay accumulators by FOX 13 investigative reporter Robyn Oguinye. Click here to read the previous installment.
SARATOGA SPRINGS, Utah — Carter Bowen is active like many kids his age and has the same hobbies as any second-grader.
He even has his own YouTube channel.
The difference for Carter: a slight bump of the head or a small cut that would be minor for anyone else could mean a trip to the hospital.
He has hemophilia, a rare genetic disorder that prevents the body from clotting blood properly.
“His first few years of life were hard. He had a lot of nose and mouth bleeds as a little kid, especially mouth bleeds,” said Ashley Bowen, Carter’s mom. “He would bite his cheeks and tongue when his teeth were coming in and we had to go to the hospital for those because that requires infusion medication that we didn’t know how to do at home.”
Often if Carter has an injury that causes a bleed, he requires an infusion, which involves finding a vein and injecting his medication to help his blood clot properly.
The price to infuse is high.
“We learned very quickly how expensive the medication is, and as he gets older, that cost goes up, because his dose increases as he gains weight and grows taller,” said Ashley.
Though the cost of Carter’s treatments will and have continued to mount, the Bowens did not have to fork out thousands of dollars on their own.
The copay assistance they were receiving was going toward their deductible.
But in 2019 after ordering Carter’s first batch of medicine for the year, the family realized they owed much more than expected.
“They said, ‘Were you not warned about this?’ And I said, ‘Warned about what?’ And they explained to me there’s a thing called copay accumulators," Ashley explained. "Essentially the insurance company collects copay assistance, but I’m still responsible for paying my deductible on top of that. That infuriated me because ... we weren’t financially prepared for that that year, so we had to fork out thousands more dollars toward our deductible that we weren’t expecting."
What the Bowens experienced was copay accumulator adjustment.
That’s 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.
“I felt like that was theft, I felt like the insurance companies are doubling up, taking their money and my money, but not letting their money count,” said Ashley.
During this year’s legislative session, FOX 13 News spoke to Sen. Curtis Bramble about legislation he sponsored for a second time, which would have required an insurer to calculate any amounts paid on behalf of an individual to count toward their deductible.
Labeled Senate Bill 152, it failed.
Similar legislation has also failed in Utah several times in years past.
When lawmakers have questions about legislation like Senate Bill 152, Utah Insurance Commissioner John Pike says his office is there to present data they have that could be helpful with decision-making.
In 2023, a few patient organizations sued the United States Department of Health and Human Services to overturn a change implemented by the Trump administration — the one that allowed commercial insurance groups to use copay accumulators.
The federal government lost that lawsuit. As of September of last year, that meant all copay assistance should count toward a consumer’s deductible.
FOX 13 News asked Commissioner Pike why Utah is not enforcing that federal ruling.
“Typically in the states who are in this camp, we follow what the federal government enforces,” said Pike. “There are a number of states that have their own accumulator laws already on the books, so typically those are the states that are enforcing those laws. In our case, we don’t have such a law on the state books at this time.”
Rachel Klein is the deputy executive director of the AIDS Institute based in D.C., which helped patients navigate copay accumulators before the government passed legislation banning them.
“I think that state insurance regulators could be protecting patients that are in their jurisdictions by enforcing this rule,” said Klein.
FOX 13 News also asked the Pike why Utah would need a state law to enforce the federal judgment.
“Only because again, when we don’t have the federal government enforcing their own policy, it’s hard for us to,” he said.
“Given that the court issued this ruling stating that the federal regulation also restricts use of these policies, I believe that state regulators have the authority to enforce that federal rule whether or not HHS is telling them to,” said Klein. “There are all sorts of federal rules that aren’t on the books that state regulators enforce all the time without an explicit letter or phone call from someone at the federal government.”
“It makes me frustrated, or it makes me angry because that should be what the standard is, what the federal government says, that should be the standard,” said Ashley. “And patients with rare diseases and expensive medications should not suffer because the insurance companies want to double up on the money.”
Carter, despite the occasional bumps and bruises, is a happy kid.
Ashley hopes the next legislative session will yield a better outcome for patients so that kids like him and others with chronic disorders can stay happy without the worry that they can’t afford their medication.
“I want the legislators to know: listen to your constituents who are in this situation, who are most impacted by copay accumulators, the ones who are on the most expensive medications that are needed to keep their family members alive,” said Ashley. “Listen to us and see how it impacts us.”