Woman With Cystic Fibrosis Denied Potentially Life-Changing New Treatment

By Consumers For Quality Care, on January 23, 2020

Amber Martin of Hermiston, Oregon has suffered from a chronic condition called cystic fibrosis for most of her life. Fortunately for Amber, a newly approved treatment for the condition could make her condition manageable. However, Amber’s insurance company is refusing to pay for the new treatment, as KNDO reports.

Cystic fibrosis is a genetic disorder that causes difficulties with breathing. People with the condition, like Amber, often must undergo a grueling daily routine to attempt to manage it.

Her current treatments take a few hours a day and she takes a number of different medicines. Martin wears a compression vest to help get mucus out of her lungs, she takes antibiotics on a cycle, inhales a medication to thin her mucus and takes enzymes to help her pancreas absorb fat from her food. 

But a new drug called Trikafta that treats the underlying cause of cystic fibrosis has been called a ‘breakthrough’ by many. In a clinical trial, it helped 90 percent of cystic fibrosis patients make their disease manageable, and it was fast-track approved by the FDA.

“Trikafta patients are getting up to 15 percent of their lung function back, which is absolutely unheard of in the C-F world,” said Martin.

Unfortunately, Trikafta does not come cheap, with an annual cost of $311,000. Amber applied for the drug shortly after it was approved, but her insurance denied her coverage for the treatment.

Trikafta would reduce the number of medications and burdensome treatments that someone like Abmer would have to go through on a daily basis. Despite being denied, she is not giving up.

“I know my kids depend on it. My family depends on it.”