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New Law Changes Life Of Colorado Cystic Fibrosis Patient

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Sen. Michael Bennet talks with Caleb Nolan (credit: CBS)

Sen. Michael Bennet talks with Caleb Nolan (credit: CBS)

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DENVER (CBS4) – Sometimes it seems like nothing gets done in the U.S. Congress, but one simple law has profoundly changed the life of one Colorado child.

Caleb Nolan is used to tests, treatments, doctors and drugs. Born with a rare form of cystic fibrosis, he takes 23 pills a day to help him breath. The hard part is that there’s no cure.

Melissa Nolan recalls the diagnosis.

“They told us the average life expectancy at that time 35 years of age, and so you kind of get dealt this deck of cards, but know you have this amount of time,” Melissa said.

At the time the Cystic Fibrosis Clinic at The Children’s Hospital was researching a drug called Kalydeco that could prolong Caleb’s life, but Food and Drug Administration approval was still years away.

“On average it takes 15 years for a drug to be approved,” Sen. Michael Bennet said.

Not anymore. Bennet introduced legislation last year directing the FDA to fast-track breakthrough therapies like Kalydeco.

“If you’re finding drugs out there that are for very serious conditions like CF and they show exceptional results, for Heaven sake we should be approving it for the patients for whom it would work,” Bennet said.

For Caleb the results have been dramatic.

“Football is this fall and I’m playing baseball, I just got done with soccer and I’m playing basketball,” Caleb said.

“This is a profound reminder that the things that we are doing back there, or not doing back there, is even just as important (and) can have real material effect on people’s lives,” Bennet said. “I just appreciate Caleb’s role in this.”

Caleb’s life expectancy today is that of any other seven year old.

Since the new law took effect last July the FDA has given fast-track approval to 10 other breakthrough therapies for conditions ranging from skin cancer to hepatitis C.

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