Fate of a lifesaving drug in Colorado is in the hands of a state board that parents say is ignoring their pleas for help

Hundreds of Coloradans fear they'll have to move out of state to access a lifesaving medication, and they say the state board that controls their fate won't even listen to their pleas for help.

While the Prescription Drug Affordability Review Board was created to lower costs and improve access to prescription drugs, Stacy Emore of Kremmling says, it could have the opposite effect.

Her 4-year-old daughter Marlee was born with cystic fibrosis and wasn't expected to live past the age of 40. She says it was difficult for her to simply breath, "you sterilize everything, you sanitize everything. You're life revolves around her treatment schedule, revolves around her pill times." 

All that changed in April when the FDA approved a breakthrough treatment called Trikafta for CF patients as young as two.

Emore says her daughter noticed a difference within two weeks of being on the drug, "she can breathe, and she can run, and she can dirt bike, and horseback ride. It's just like doors opened... it was the wind beneath her wings and finally she can soar."

For the first time, she says, she had hope that her daughter would have a normal life. But it didn't last long.

In August, Colorado's Prescription Drug Affordability Review Board announced it was considering capping the price of Trikafta, which runs more than $300,000 per year.

Emore and others fear the manufacture will pull its drug out of Colorado, "there's no words to describe what it's done for our family and what it's done for future families and it's saving lives and it's like 'don't take this from us.'" 

Emore says she and her husband will have no choice but to leave all their family and move out of state to save their daughter's life.

She says the five board members who control their fate haven't even bothered to show up for public comment, "you're gambling with our lives and our children's lives. Why can't you devote two hours your time to listen to our biggest fear in life right now."  

While public comment is now closed, Emore says the board hasn't heard the last of them, "and CFers fight and they're going to fight and keep fighting until we win."  

The Division of Insurance says two board members listened in by phone to the last meeting and will consider the impact the drug has on patients' lives when making a decision, but price is a big concern. 

While the average cost of the treatment for patients is about $1,700 a year, the state says the cost to the health care system - including Medicaid - is more than $200,000 per patient, per year. 

Despite that, patients and providers insist access to the drug is not an issue because of insurance and co-pay assistance programs.

Trikafta is one of five drugs the board is considering for a price cap. It could make a decision before the end of the year.