30
July
2015
|
03:40 PM
Europe/Amsterdam

New drug could be a medical miracle for cystic fibrosis patients, but it comes at a price

Like most ten year olds, Lyman Staton lives for the outdoors. We're talking soccer, baseball, football. From the outside, he's a just like a normal kid, but on the inside, it's a different story.

"This is the first time we've seen a drug that treats the underlying cause of [cystic fibrosis], which is huge," said Lyman's mom, Shelley.

Patients with cystic fibrosis, or CF, do hours-long breathing treatments and take several dozen pills a day; but two of those daily pills are making a real difference.

The drug is called Orkambi, and the Food and Drug Administration just approved it this month.At $259,000 a year, some patients worry the pill could be out of their financial reach.

"Nobody wants to throw this away, so there will be a solution to how to get it maintainable or sustainable," said Dr. Philip Black, a CF specialist at Children's Mercy Hospital.

Dr. Black is also Lyman's specialist. He said while there is some serious sticker shock, the benefits of the drug mean that patients who need it will likely be able to affordably get it.

Read more via KSHB