This is the fourth in a 5-part series of reports on copay accumulators by FOX 13 investigative reporter Robyn Oguinye. Click here to read the previous installment.
“I work in libraries, so I have a perspective of everybody having a different story coming in and what that story might look or feel like.”
When you’re a librarian like Jami Munk Carter, the stories you hear are as varied as the books on the shelves.
When Fox 13 sat down with her, the beginning of her story started in 2007 when she was diagnosed with multiple sclerosis.
“Two years after a cancer diagnosis and I had just seen a diagnosis that was pretty bleak,” says Jami. “We didn’t hold high hopes that I would see 30. Two years to the day of my last chemo and radiation treatment, I was in the hospital having all of these tests.”
Multiple sclerosis, or MS for short, is a chronic disease of the central nervous system in which the body attacks itself by mistake.
It can weaken muscles, cause fatigue and impair coordination.
Like other chronic diseases, there’s no cure, so Jami takes medicine that keeps her MS in check.
But the burden to pay for it has cost more than the number on the price tag.
“Right now it’s $97,000 a year,” says Jami. “I asked permission from my kids to cash out their college funds before they probably knew what college was to pay for medicine.”
And it hasn’t been easy to keep taking her medication.
For years, Jami was receiving assistance from the pharmaceutical company to help cover medical expenses.
But that assistance suddenly stopped.
“I had ordered two months’ worth of medication. By the time they caught up, the pharmacy said, ‘You owe us $15,000’ and I was like, ‘No, I’ll just call, it’s a mix-up’. It wasn’t a mix-up,” says Jami.
She was hit by copay accumulator adjustment.
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.
Jami had to make some tough choices.
“I thought, how can I ration the two shots that I have left long enough? Do I skip two weeks? Because again, if I ration these, I open myself up to brain damage,” she says. “I just rationed and went every two weeks and then when I still didn’t have things paid off, I waited three weeks before I took another shot.”
The Apothecary Shoppe in downtown Salt Lake City is not your typical pharmacy.
It feels like walking into a friend’s home to pick up your medicine.
“One of the things that makes my pharmacy different than other pharmacies that are my competitors - you’re not a number,” says Kevin DeMass, a registered pharmacist and owner of the Apothecary Shoppe. “You’re a face, you’re a name, you’re a patient, you breathe the same air I breathe, you have the same blood that I have and you’re part of my family.”
When it comes to copay accumulators, he’s seen it all.
“I went to school for years and years, trained in physics, trained in mathematics, trained in chemistry. I was never trained to stand in front of a young mother and tell her, ‘Your medication for your daughter is going to be $10,000’ and watch her break down as an inadequate mother, not able to care for her young daughter, turn around in tears and walk out of the pharmacy not getting the medication that they deserve. That is the hardest part,” says DeMass.
But it doesn’t always end there.
“We’ll take it the next step. I’ve got a team of professionals that will take it to the patient assistance side, we’ll look for other funding,” says DeMass. “It doesn’t have to be a manufacturer’s card. We’re going to look for other funding. There’re charities, there’s churches, there’s foundations, there’s entrepreneurs, there’s philanthropist. People out there have a genuine, good heart. Let me help you find those with our team, so that you can come back and pick up that prescription.”
During this year’s legislative session and the 2023 session, Fox 13 spoke to Sen. Curtis Bramble about legislation he sponsored two years in a row, which would essentially do away with copay accumulators in Utah.
Labeled Senate Bill 152, it failed.
Similar legislation has also failed in the state several times in years past.
DeMass says there are changes he thinks need to happen at the capitol to help the patients that walk through his doors.
He says there’s two options.
“To wait until this circumstance affects the family of that lawmaker or loved one, a coworker or another lawmaker, and watch the trauma that circles around that. That’s a horrible thing,” says DeMass. “ Or get the legislation that’s simple, put it into process. It does not have to be perfect and let us baby step the legislation. We can always fix it if we make a bad decision. And if that’s a bad decision, we’ll come back and correct that decision, but let us move forward in saving lives, correcting our mistakes until we get it right.”
Jami just celebrated another birthday last week, a milestone for someone who didn’t think they’d see 30 nearly two decades ago.
She’s still figuring out how to work around her copay accumulator.
But is hoping she won’t have to worry about it much longer.
“I’m now trying to prove to the Legislature that I am a human and I matter. It does matter and I am important. And you are important and your kids are important and this is going to happen to you somewhere in your life,” says Jami. “If this continues, it will break people.”