The good news: A new drug called Kalydeco has been approved by the FDA to treat cystic fibrosis (CF). It targets the root cause of the disorder, and although it’s not a cure it’s supposed to greatly improve the quality of life for CF patients and help them live longer. (The current life expectancy for most CF patients is in their 40s).
The bad news: The drug company who owns Kalydeco is charging patients more than $300,000 annually for this potentially life saving treatment.
"To see a price like this was a kick in the gut,” said Dr. Brian O’Sullivan, a CF specialist. “It was really hard to take. I knew it would be an expensive drug. I thought it was going to be $10,000 a year, not $300,000 a year."
Drug companies claim they aren’t trying to gouge patients, they’re just trying to stay in business. And it’s true that the company making Kalydeco, Vertex, technically isn’t profitable. However, their CEO got a compensation package worth more than $28,000,000 last year. Plus, CF patients are particularly mad because they helped fund Kalydeco’s development in the first place. Patient groups raised millions of dollars in support. And now many people, like Dr. O’Sullivan, feel that Vertex is profiteering off them.
"There's really no transparency in how those prices are set,” said Matthew Eyles of America’s Health Insurance Plans. “They are able to charge whatever they can and whatever the market will bear, without any questions to the underlying value of a drug or its underlying cost of production."