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Cystic Fibrosis Foundation Awards Senator Michael Bennet the Breath of Life Legislator Award

December 6, 2013

Senator Bennet

Senator Michael Bennet (D-Colo.) receives Breath of Life Legislator Award from Colorado State Advocacy Chair Bill Elder and Cystic Fibrosis Foundation board member Michael Beatty at the Breath of Life Gala in Denver, Colo.

The Cystic Fibrosis Foundation awarded U.S. Senator Michael Bennet (D-Colo.) the Breath of Life Legislator Award on November 9 for his work to help improve the health and quality of life for people with cystic fibrosis.

“Senator Bennet is a champion for the cystic fibrosis community and we are lucky to have him in our corner,” said Robert J. Beall, Ph.D., president and CEO of the Cystic Fibrosis Foundation. “His success in advocating for cystic fibrosis research, drug development and access to care has helped advance our mission to find a cure for CF.”

Bennet sponsored a bill in Congress in 2012 that led the U.S. Food and Drug Administration to create a new process that designates treatments as “breakthrough therapies.” This designation is intended to speed the development of select potential therapies that treat life-threatening diseases or conditions.

The first treatment to receive this new designation was the combination of Kalydeco™ (ivacaftor) and a potential drug known as VX-809. Kalydeco, developed by Vertex Pharmaceuticals and approved in January 2012, is the first therapy to treat the root cause of cystic fibrosis for a small subset of the CF population. The combination of Kalydeco and VX-809, which targets the genetic defect for a larger portion of those with CF, is now in late stage clinical trials.

“We are grateful for Senator Bennet’s leadership and dedication to fighting for people with cystic fibrosis and working to accelerate the development of lifesaving therapies for this devastating disease,” said Frank Accurso, M.D., director of cystic fibrosis clinical research at Children’s Hospital Colorado and University of Colorado Denver.

Earlier this year, Bennet led a dozen colleagues in an effort to revise a proposed rule that could limit the ability of many people with CF to access Social Security disability benefits. Thanks to this outreach, the Social Security Administration took the unusual step of hosting a teleconference for the CF community. This provided an important opportunity for further discussion about the proposed rule’s impact.

This is the second Breath of Life award given by the CF Foundation to a member of Congress. The first was presented in 2007 to then-Congressman Edward Markey (D-Mass.), founder of the Congressional Cystic Fibrosis Caucus and long-time advocate for those with CF.
 

The Cystic Fibrosis Foundation is an accredited charity of the Better Business Bureau.