Patients and doctors worry "miracle" drug Trikafta may no longer be available in Colorado amid possible price-cap

Some Coloradans are sounding an alarm after learning a state board is considering capping the price of a life-saving drug.

They're worried the move could cause the manufacturer to leave the state.

The drug is considered a miracle for cystic fibrosis patients like Hannah Pfeiffer, who wasn't expected to live past 31 years old when she was born: "It was hard to even think of a future"

Then came a breakthrough. In 2019, as Pfeiffer's lung function deteriorated and she went on a wait list for a double lung transplant, the FDA approved a new drug for cystic fibrosis called Trikafta.

"It's just completely life-changing," says Pfeiffer, who could barely walk across the room before the drug and now is going on seven-mile hikes and called Tikafta a "miracle drug."

She's off the transplant list, working full time as a special education teacher, and is newly married to her high school sweetheart: "Sometime I feels like it was a whole different life I was living at the time." 

She not only dreams of having her own kids today: "I want to meet my grandkids and have all those dreams. Now, that could be a reality."

But miracle drugs don't come cheap. The list price for Trikafta is $300,000 a year, which caught the attention of the state's new Prescription Drug Affordability Board. The drug is one of five it's considering capping the price of in Colorado to increase access to it.

Pfeiffer says patients already have access. She says many insurers, including her carrier, cover the cost of the prescription: "We pay about $15 a month for this drug and there's so many co-pay assistance programs." 

She worries if the price is capped, the manufacturer will no longer sell the drug here.

Colorado Insurance Commissioner Mike Conway says every time the state tries to cut the cost of healthcare, the industry warns it'll hurt access.

"To speak directly to that fear component, that's why the governor put these five experts on this board, right? He didn't put people like me on the board, he put five people that are experts in the pharmaceutical industry; both doctors, pharmacists themselves," he said. "Even if in this affordability review, the board ultimately finds that any of the five drugs are unaffordable, it doesn't mean that the board has to necessarily set an upper payment limit."

But Pfeiffer worries they will and the manufacturer will leave Colorado, along with hundreds of patients like her: "The thought of having to possibly go somewhere else to get this life-saving medication is so scary."

While the Board found Trikafta costs Cystic Fibrosis patients about $17 hundred a year on average, it costs the health care system in Colorado - including insurers, the state and patients -- more than $200,000 per patient per year, which is one of the reasons the board is considering capping the price. It reviewed more than 600 drugs with the help of an advisory panel that includes manufacturers, researchers, doctors and patients. They looked at 17 criteria and Trikafta met all of them. Among the things they didn't look at were co-pay assistance programs and the impact of the drug on patients' lives.

The Division of Insurance says they will consider both when making their final decision, which is expected by next spring.