SALT LAKE CITY — We first met Carrie Ann Kemp in February. She has a sense of humor, she’s got great hair, she teaches maturation to thousands of students across Utah and she is a survivor.
“I had 21 surgeries in 18 months, I had chemo every week for seven months, I had a radical bilateral mastectomy, which means everything including lymph nodes and I had a radical hysterectomy, which means all the girl parts removed,” sais Carrie Ann. “Then I had over 100 days of radiation. It was a lot, but that’s what made me go into remission for 10 years.”
Ten years cancer-free, but in 2022, Carrie Ann’s cancer came back, that's when she started taking Ibrance, a drug that keeps cancer from progressing.
For the last two years, it has kept new cancer from growing. That’s why FOX 13 News first met Carrie Ann.
She received a letter from her insurance provider in December that stated the assistance from the pharmaceutical company that would typically go to her out-of-pocket maximum would no longer be applied.
At the time, Carrie Ann's pharmacy told her she would have to start forking out half of the cost of the monthly medication. For Ibrance, that cost is $24,000.
FOX 13 News was there for Carrie Ann’s doctor’s visit in February when she left without her monthly dose. More than three months later, she now has a more promising outlook.
“I had to come up with a way to come up with my copay and I did," she said, "so I’m actively back in treatment. It had a great financial sacrifice to some certain aspects of my life, but I’m here."
As it turns out, Carrie Ann doesn’t have to pay the $12,000 that was initially quoted to her. Her out-of-pocket cost isn’t quite as much, but it’s still much more than what she would owe with the assistance she was previously receiving.
“It doesn’t matter if your out-of-pocket is $1000 or $10,000, what’s happening is that you receive this benefit, this copay assistance card from the pharmaceutical company and it’s no longer getting applied to your deductible,” she explained. “It’s getting captured, but it’s not getting used for the patient. It doesn’t matter what it turns out it is that you owe. The issue is still there. The cards are not being applied towards our deductibles.”
Carrie Ann, like many Utahns, has fallen under what’s called copay accumulator adjustment. That’s when insurance companies and pharmacy benefit managers (PBM) keep the copay assistance meant for a patient and use it for more profit.
In 2022, Sen. Evan Vickers authored a bill that aimed to combat this very issue, to keep money in patient’s pockets.
It failed.
During the 2023 and 2024 legislative sessions, FOX 13 News spoke to Sen. Curtis Bramble about his efforts to pass similar legislation. It also failed last year and this year.
“Everybody has a story, so you’re lucky if you get a legislator’s ear,” said Carrie Ann. “The majority of them were fairly compassionate, felt bad for my situation. They would nod through my story and then they would want to know, what’s the fiscal note? What’s the data? What’s this? I am begging for my life and I felt sort of skimmed over, but I also understand that they have a job to do and they’re representing this entire state. But we got close and we’re not going to quit.”
“I will regrettably admit that we often times don’t hear about it, we don’t know,” says State Rep. Kera Birkeland. “Honestly until Sen. Curt Bramble reached out to me by phone and said, ‘Hey, here’s what’s going on. I need you to be a fighter on this issue’. I didn’t know the bill existed. I didn’t know about the effort. I didn’t know Carrie Ann’s story.”
Rep. Birkeland was the House co-sponsor for this year’s bill alongside Sen. Bramble. FOX 13 News asked Birkeland about House Speaker Mike Schultz’s opposition to Senate bill 152.
“I have not spoken to Speaker Schultz about this issue," she replied. "I look forward to those conversations. I feel like I have a very good relationship with him, very respectable relationship with him, so we can have a conversation and understand what the barriers are because there’s always two sides, multiple viewpoints on why something is good or bad, but I think with 20 other states now passing it, we can make a case for why this is going to be a benefit to Utahns."
Birkeland was asked if the focus on Capitol Hill was too centered around overhauling the health care system rather than focusing on creating a solution to this pressing issue for patients.
“People say things are too big, they’re too hard, they need to be overhauled. It makes people feel intimidated to jump into it and start the process,” said Birkeland. “I think that you just need a committed group of legislators and stakeholders to jump in and hopefully I’ve talked to a few representatives about starting a task force that dives into with the medical transparency portion, adding this piece to it and yes, looking at a quote unquote overhaul, but getting something actually relevant, tangible done for the people of Utah in 2025.”
Carrie Ann is hoping for that relevant, tangible change and realizes it will take more work to get there.
“Every problem has a solution. Sometimes it’s not a solution that we want, but that doesn’t mean we can’t compromise. That’s what I’m hoping for, is that we can come to a compromise,” she said. “We’re not going to get everything we want, but the opposition shouldn’t get everything they want either.”
Because Carrie Ann knows time waits for no one and she’s hoping policy can catch up sooner rather than later.
“This is one bill that directly affects if people live or die,” she said. “It’s a big deal. People get to live. I have more time with my kids. I have more time with my maturation kids. I’m the maturation lady, I don’t want to die. I want to keep teaching fifth graders about how awesome it is to be alive.”
FOX 13 News did request to talk to Speaker Schultz after having heard his opposition to this year’s bill. Rep. Birkeland stepped in when that request was made. Another request to Schultz’s team was made to see if he had any comment or statement about the future of copay accumulator legislation in Utah.
As of Thursday, FOX 13 News has not received a response.