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Utahn with Crohn's disease navigates the complicated world of 'copay accumulators'

Posted at 10:44 PM, May 26, 2024

This is the first in a 5-part series of reports on copay accumulators by FOX 13 investigative reporter Robyn Oguinye.

OREM, Utah — CrossFit is not for the faint of heart. Former runner Vince Massa would know.

For Massa, life has been a marathon — not so much a sprint like his high-intensity workouts.

He’s been living with Crohn’s disease since 1996.

“It was very sudden and very severe,” Massa said. “By the time they diagnosed it, I had lost 40 pounds in a matter of a couple of weeks. I was hospitalized, and I had my first bowel resection shortly after that.”

Crohn’s is a chronic bowel disease that inflames the lining of the digestive tract. It can be life-threatening if not treated properly.

“For whatever reason, whatever medication they put me on, I would either have really bad side effects or it just was ineffective, so I started burning through the list of options very quickly,” Massa said.

For a while, he was taking an injectable priced at $16,000, a shot that had to be refrigerated and administered every seven weeks. Though it was expensive, it helped manage his symptoms, and the company he worked for paid for it with its self-managed health care program.

“Sometimes I had to go to my doctor. He had to write letters to them, explaining why the medications were needed when in the past other medications didn’t work and how basically if I didn’t get the medication, it would mean surgery again. Surgery is very, very expensive," he said.

Eventually, Massa's company told him they could no longer afford to pay for the $16,000 injectable, so he sought out private insurance.

He found a local provider, but after a while, his out-of-pocket expenses became difficult to manage.

“As time went on over the last three years, it went from $1,500 a month to $1,800 a month, to this year it would’ve been $2,600 a month, which we couldn’t even afford then," he said.

Massa got word that beginning this year the insurance company would not allow the money that comes from his prescription assistance program to count toward his deductible.

This is called a copay accumulator.

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.

“They said, 'We’ll still take the money from the prescription companies, but it’s not going to go to your copay. You’re still going to be responsible for that,'” Massa said. “It’s like, so why even take the money from the prescription company?”

“Almost everybody in the state of Utah has it written into their plan right now, and that is a sad truth of where we’re at today,” said Rebecca Yates, an insurance broker and the founder of Ark Insurance Solutions.

An insurance broker helps people decide what type of insurance they need and what kind of coverage.

Yates works with folks like Massa who are often surprised when their costly medications that were largely covered thanks to pharmacy assistance become unaffordable.

“This by definition group of people have to be at a certain income level to qualify for those coupons, and so to go out to them and say, ‘You are now responsible for the skyrocketing cost of medications,' it doesn’t make any fiscal sense and it doesn’t make any moral sense,” said Yates. “If you’d asked me a year ago, I would’ve said, ‘Here are the carriers that aren’t playing in this game,' but as of January, over 90% of our market is participating in copay accumulators.”

How can you tell if your insurance plan has a copay accumulator?

“That’s the tricky bit. They’re not going to outline in your contract: ‘We have a copay accumulator.’ There’s no place in your contract where it just says ‘We apply a copay accumulator,’” said Yates. “You would either have to call them and ask about your particular medication and how that will be applied. The way you would address that is: ‘Hi, I am taking this particular medication. If I receive a coupon, does it get applied to my deductible and out-of-pocket maximum?’ Questions you specifically have to ask. But you can’t look through your paperwork and know.”

During the 2023 and 2024 legislative sessions, FOX 13 News talked to Sen. Curtis Bramble about the bills he sponsored that would ban copay accumulators in Utah.

The legislation has failed four times in the past.

Yates is hoping for a better outcome next session.

“These consumers, these humans that work in our society every day that are not getting access to their life-saving medication, we have to problem-solve for these people right here. Focus on this,” said Yates. “You saw our last legislative session. We got very close to finding the solution.

As for Massa, while his physical interests have gone from marathons to sprints, what hasn’t changed is his will to keep going. Letting a copay accumulator get in the way of that is not an option.

“When I was first diagnosed, it was proposed, ‘Well, your situation is severe enough. You can go on disability. You don’t have to work.’ That’s not something that I wanted to hear,” he said. “It’s like, if I can get up and get out the door, I’ve got a responsibility to myself, my family and the community in general. I need to go out and try to do work. I need to try to take care of ourselves, so I don’t want to give up. I don’t want to throw this on to somebody else and say, ‘You take care of it for me.' I want to be able to make it work.”

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