Colorado cystic fibrosis patients concerned about Trikafta access amid possible drug price limits


Shane Ersland


Colorado is one of several states that has recently installed a Prescription Drug Affordability Board (PDAB) in an effort to lower drug costs. But some Coloradans are concerned that the process could lead to disruptions in access to certain life-saving medications.

Some PDAB states are permitted to set upper payment limits (UPLs) on drugs, including Colorado’s. Its PDAB is currently conducting affordability reviews for five drugs it may consider for UPLs: Enbrel, Genvoya, Cosentyx, Stelara, and Trikafta.

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Several residents who suffer from cystic fibrosis have expressed concern about the inclusion of Trikafta on that list during PDAB meetings. The US Food and Drug Administration approved Trikafta for cystic fibrosis (CF) patients (age 12 and older, with at least one F508del mutation) in October 2019. Since then, it has been a game-changer for many CF patients who say it has vastly improved their lives. 

Dr. Samantha Monson, a psychologist in Denver, told State of Reform that, although the PDAB’s overall purpose is to render medications more accessible to patients by lowering costs, many CF patients are concerned about Trikafta access because it’s made their lives so much better, and they’re unsure of how a UPL would affect it.

“I think costs need to be contained. You have to start somewhere, and a UPL is a place to start. It’s going to work for some medications, and for some, it won’t. The process has not matured to be able to safeguard the ultimate issue, which is access. It’s well-intentioned, but it needs to mature and develop. The biggest skeptics said this will be devastating. I think the UPL process needs to be better tested and refined with medications that people’s lives are not so dependent on. If access  was jeopardized unintentionally, there would be no other medication that’s close to Trikafta.”

— Monson

Monson was diagnosed with CF as a baby. She compared the impact Trikafta has had on her life and others who use it to the impact highly active antiretroviral therapy (HAART) has had on individuals diagnosed with HIV. 

“When HAART was approved, it meant HIV was no longer a death sentence,” Monson said. “That’s what Trikafta has done for CF patients. It’s the same thing. I am down from doing respiratory treatment for two hours a day to less than an hour. I’m not malnourished anymore. I now have normal bone density. Since being on Trikafta, I have not missed one single day of work.”

CF patients are constantly at risk for lung infections, and their hospitalizations can be exceptionally long. 

“I feel like it could be difficult for someone who has not had CF to understand what Trikafta means,” Monson said. “Imagine the last 12 months of your life, and it was spent in the hospital. That’s living with CF. Many people would’ve had 12 months of life sucked up by a hospital stay if not for Trikafta. If I plan a trip, I might not have it. You live with this worry every day, even when you’re healthy. And then came Trikafta. No one is going to the hospital anymore. We’re not missing out on life anymore.”

The five drugs chosen for affordability reviews by the PDAB are all expensive, and Trikafta (which is only taken by a few hundred Coloradans) has a list price of $300,000 a year. But many insurers cover the cost of the prescription, and pay about $15 a month for it. 

“I’ve never paid more than $15 for Trikafta because of its financial assistance program,” Monson said. “And I have never had access issues, and that seems to be the feedback coming from the CF community.”

The Cystic Fibrosis Foundation’s annual patient registry report shows a high utilization rate of more than 90 percent of eligible patients for Trikafta. And Monson said the drug’s manufacturer, Vertex, conducts outreach to ensure CF patients have access.

“The Vertex program provides financial assistance and uses their own money to have a care team. When a patient is prescribed a drug, it’s going to get into their system that they’re taking this medication because Vertex reaches out to all CF patients. And because it’s a rare disease, you have a patient population that makes sure no one falls through the cracks.”

— Monson

State of Reform also asked the Cystic Fibrosis Foundation (CFF) whether it had Trikafta access concerns around PDAB’s work. CFF spokesperson Katie Haswell said the foundation has had ongoing communication with PDAB to ensure that it understands the transformative benefits of cystic fibrosis transmembrane conductance regulator modulators like Trikafta.

“To date, no state has established a UPL for a drug, so it is challenging to predict how it might impact access,” Haswell said. “Any policies put forward must ensure that everyone with CF in Colorado continues to be able to benefit from this highly effective therapy.” 

PDAB Director Lila Cummings described the work the board is doing at the 2023 Colorado State of Reform Health Policy Conference.

“We heard over the past two years from consumers directly that prescription drugs (are) unaffordable,” Cummings said. “That’s a concern. So the work of the board is to understand which prescription drugs are unaffordable to Coloradans, and what can be done to increase access.”