Cystic fibrosis patients finding new hope in Orkambi

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INDIANAPOLIS, Ind. (July 22, 2015)-- Daniel Seddon is a 22-year-old man with cystic fibrosis. He’s played baseball most of his life, most recently at the University of Missouri-St. Louis.  Doctors encourage CF patients to be active, but Seddon says it can take a toll.

“For me, the next day is tough,” said Seddon. “ I think a lot of CF patients will tell you the same thing. If they just really go hard one day and just really work hard one day, the next day is a real struggle.”

But thanks to Orkambi, Seddon says that’s not the case for him anymore.

“That next day isn’t that hard anymore and that’s what’s really amazing to me," said Seddon.

“This year has been a major improvement of being able to, I don’t want to say overcome, but just being able to recuperate after a game,” said Scott Seddon, Daniel's dad.

The cost of Orkambi, now runs around $259,000 a year.

“Our hope and our prayer is that the insurance companies will come along the side of us and help to ease some of that burden a CF patient will have, just to get the drug,” said Laura Seddon, Daniel's mom.

Daniel knows, though, what this drug means for him.

“I know there’s a lot of people out there who need the drug a more than I do, honestly. To see them take it and to see their improvement is going to be remarkable.”

Orkambi is not yet approved for use in people younger than the age of 12.  It’s made by Vertex Pharmaceuticals.

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