Congressional Briefing Showcases CF Foundation Drug Development and Care Center Models

February 12, 2014

Caucus Feb 2014

Senator Edward Markey (D-Mass.) speaks about the benefits of the CF model at a CF Foundation-hosted Congressional briefing.

The Cystic Fibrosis Foundation hosted a Congressional briefing on February 11 to discuss the benefits of the Foundation’s model of specialized, coordinated care and its innovative strategies for drug development, and how they can serve as an example for other rare, chronic diseases.
 
The event, entitled “Personalized Medicine and Quality, Coordinated Care: The Cystic Fibrosis Model,” included a panel discussion of health care experts who specialize in CF, moderated by Robert J. Beall, Ph.D., president and CEO of the Cystic Fibrosis Foundation.

The briefing was co-sponsored by Senators Edward Markey (D-Mass.) and Kelly A. Ayotte (R-NH) and Congressional Cystic Fibrosis Caucus co-chairs Representatives Tom Marino (R-PA) and James McGovern (D-Mass).  Panelists included Terence R. Flotte, M.D., dean of the University of Massachusetts Medical School; Carlos Perez, M.D., director of the Cystic Fibrosis Care Center at Geisinger Medical Center in Danville, Penn.; Paul Negulescu, Ph.D., vice president for research at Vertex Pharmaceuticals; and Megan Stacy, who has cystic fibrosis.

Life expectancy of a child with CF has doubled in the last 30 years, because of the CF Foundation’s efforts to improve care and spur drug development.

“Our progress in the search for new treatments and a cure is due in large part to collaboration across sectors -- government, academia, industry, the medical community, and patients and their families,” said Robert J. Beall, Ph.D., president and CEO of the Foundation. “Because of their efforts, we continue to make a lifesaving difference for people with cystic fibrosis.”

“I’m 29 years old and was diagnosed in 1985. The outlook was much tougher then,” said panelist Megan Stacy. “It’s because of the research and integrated care that I’m able to sit here today.”

The Foundation funds and accredits more than 110 cystic fibrosis care centers nationwide. The National Institutes of Health has cited the CF care center network as a model of effective and efficient health care delivery for a chronic disease.

The Foundation’s innovative drug development model has resulted in a robust pipeline of therapies that attack the disease from every angle, including those that target the root genetic cause of CF. Virtually every approved CF drug available today was made possible through Foundation support.

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