The Cystic Fibrosis Foundation represents nearly 30,000 people living with cystic fibrosis (CF) in the U.S. today. The foundation recently applauded the Senate Cystic Fibrosis Caucus initiative created by Sens. Edward Markey (D-Mass) and Charles Grassley (R-Iowa).
“Senator Markey and Senator Grassley are ardent champions of the cystic fibrosis community, and we are deeply grateful for this bipartisan show of support for people who live every day with this serious, life-threatening disease,” said CF Foundation President and CEO Preston W. Campbell III, M.D., in a press release. “We at the Cystic Fibrosis Foundation look forward to continuing our close collaboration with the senators as they explore ways to improve the lives of people with CF.”
The bipartisan senators’ group will work together with the House of Representatives’ Congressional Cystic Fibrosis Caucus, led by Reps. James McGovern (D-Mass) and Tom Marino (R-Pa). The caucus’ main purpose is to raise awareness about the condition, pressure policy action, and support research, all in the name of helping cystic fibrosis patients live longer, healthier, and happier lives.
“The formation of this caucus is intended to highlight the importance of beating this dreadful, cruel disease and pledging to all those with cystic fibrosis and their loved ones that Congress is dedicated to supporting you,” Markey said. “Our hope for this caucus is to make CF stand for ‘Cured Forever.’
“We need to provide patients with hope for a better future and we can do that by making greater investments in research, providing resources for treatment and showing our unwavering commitment to the people with CF, their families and caretakers. I thank Chairman Grassley for his partnership in founding the Senate caucus, and I look forward to working together on a bipartisan basis to help families gain more control over this disease,” Markey added.
Cystic fibrosis is a life-threatening hereditary disease that is estimated to affect nearly 70,000 people worldwide. It damages the lungs and can potentially lead to respiratory failure. The CF Foundation was established 60 years ago, and at that time, the average life expectancy of a child diagnosed with cystic fibrosis was only about five years. Today, the foundation says that significant advances in treatment and care for this condition have raised this number dramatically, with life expectancy now in the 30s, 40s, and beyond.
The funds that the foundation has raised, — hundreds of millions of dollars — have helped discover and develop many of the effective cystic fibrosis therapies that contributed to this improvement. Nearly every CF drug available today has had a little help from the foundation’s work.
“The advocacy of the cystic fibrosis community is impressive, and it’s gained results. These families are passionate about helping their children live past the predicted 40-year life expectancy. Their children fight an everyday battle to live healthy, regular lives. The Senate caucus is meant to add to advocacy efforts in promoting awareness, research, and policies toward a good quality of life and a cure,” Grassley said.
The Senate Cystic Fibrosis Caucus is now joining the House of Representatives’ Congressional Cystic Fibrosis Caucus, which has been active since 2006, established by then-Reps. Markey and Cliff Stearns (R-Fla). It currently has 143 associated bipartisan members.
“As co-chair of the Cystic Fibrosis Caucus in the House, I am thrilled that Senators Markey and Grassley are joining the bipartisan push to raise awareness and find a cure. With the House and Senate working together, we can continue to build on the great work led by the Cystic Fibrosis Foundation and support the strong investments in the research needed to help everyone with this disease to live longer, healthier lives,” McGovern said.
“As a father of someone who suffers from cystic fibrosis, this issue is extremely close to my heart,” Marino said. “I am incredibly proud of my colleagues in the Senate for joining the cause to put an end to CF. We are strongest when we work together and I know having a bicameral caucus aimed at raising awareness and supporting research will enable us to make real, meaningful progress in our efforts.
“I look forward to working closely with Senators Markey and Grassley and thank them for standing with us in our fight to cure CF,” he added.