Colorado board leaning against price cap for "miracle" cystic fibrosis drug
The state's new Drug Affordability Review Board is closer to making a decision about whether to cap the price of a life-saving drug for cystic fibrosis.
The board met Friday to discuss the drug Trikafta and all indications are the board will not set an upper limit on the price of the drug, which was approved three years ago for CF and is considered a miracle drug.
The board was less than an hour into its review when board member Amarylis (Amy) Gutierrez suggested they pull the plug and take the miracle drug out of consideration for a price cap.
"What would be the harm and I don't know this answer... of excluding further research based on overwhelming data?" Gutierrez asked.
It was at that moment a wave of relief washed over patients like Hannah Pfeiffer, who says Trikafta should have never been considered in the first place.
"I think it's so disappointing that we're to this point," she said.
For months she and other CF patients have begged the board not to cap the price of the drug, fearing the manufacturer would pull it from Colorado. They told board members it has changed their lives in ways they never thought possible, including planning for a family and retirement.
Some families were upset that board members hadn't attended previous meetings where they had testified about the impact the decision would have on their lives. The board said it would change that going forward.
"We want to hear your voice and that it is being heard and implemented into these very important decisions," said board member Justin VandenBerg.
The board also heard from 19 state lawmakers, who sent them a letter urging them to take Trikafta out of consideration as well.
While it runs more than $234,000 per patient per year, board staff members say most people pay about $8,900 out-of-pocket because of insurance and assistance programs by the manufacturer and nonprofits.
Pfeiffer says it also saves the state money. Medicaid spends $46 million a year on the drug, but she says without Trikafta, she would have needed a million-dollar double lung transplant.
"Many of us are off disability now, we're off of Medicaid and so that's saving money to the state as well as way less surgeries, hospitalizations, additional medications," she said.
Ultimately, the board decided to finish the review it started, but hinted at where it would end.
"As we're clearly headed in a clear direction," said board member Sami Diab.
Pfeiffer says the decision can't come soon enough. She wants to start a family.
"I am so... so grateful for the direction this meeting seem to be headed but the sooner we could have that relief the better," she said.
Pfeiffer says she's concerned if Colorado caps the price of Trikafta, other states with drug affordability review boards will follow its lead and the drug could be difficult to get access to in the U.S., as it is in some other countries.
The board's final decision could come by the end of the year but will likely come early next year.
