PORTLAND, Maine--(BUSINESS WIRE)--U.S. Senator Susan Collins (R-ME) received the Cystic Fibrosis Foundation’s Breath of Life Legislator Award for her leadership in ensuring that people with cystic fibrosis (CF) have access to the adequate, affordable care they need to live full and healthy lives. The Cystic Fibrosis Foundation is the world’s leader in the search for a cure for CF, a fatal genetic disease that progressively limits the ability to breathe and ultimately causes premature death. CF affects more than 30,000 children and adults in the United States and 70,000 people worldwide.
“For more than 60 years, the Cystic Fibrosis Foundation has been dedicated to improving the lives of people with cystic fibrosis by championing new treatments and high-quality, specialized care,” said Senator Collins. “I am honored to receive this recognition for my work to expand access to quality, affordable health care for people with cystic fibrosis and their families as well as my advocacy to expand research to fight this disease. Working together, we can ensure individuals receive the support they need to live full and healthy lives.”
As Congress considered a series of health care bills over this past summer, Senator Collins made it clear that she would oppose any bill that does not protect the needs of people with CF and other chronic diseases. Thanks in large part to her leadership, the Senate rejected legislation that would have dramatically cut Medicaid funding, rolled back important essential health benefit protections, jeopardized protections for people with pre-existing conditions, and potentially opened the door to annual and lifetime caps on coverage, which would have endangered access to critical care for millions of Americans.
Along with her leadership this summer, Senator Collins has advocated for people with CF and other chronic diseases throughout her time in Congress by:
- Co-sponsoring the Ensuring Access to Clinical Trials Act of 2015, which made permanent a law to allow people with rare diseases to receive compensation for participating in clinical trials without risking eligibility for SSI and Medicaid.
- Advocating for funding for the National Institutes of Health (NIH) as a senior member of the Appropriations Committee. Senator Collins secured a $2 billion increase for the NIH this year, which built on a $2 billion funding boost she secured last year.
- Joining the Senate Cystic Fibrosis Caucus, which raises awareness of cystic fibrosis; supports CF research, drug discovery, and development; and supports access to quality, affordable CF care.
“The Cystic Fibrosis Foundation is proud to honor Senator Susan Collins with the Breath of Life Legislator Award for her steadfast support of the cystic fibrosis community,” said Preston W. Campbell III, M.D., president and CEO of the Cystic Fibrosis Foundation. “As a member of the Senate Cystic Fibrosis Caucus, a strong supporter of funding for the NIH, and a consistent voice of leadership during this year’s health care reform debates, Senator Collins has proven herself time and again to be a champion for people with CF and their families.”
The award was presented by Stacey Morrison, the mother of a young son with CF. Morrison‘s mother, Dianne, spoke with Senator Collins at a Fourth of July parade this year about the importance of access to adequate, affordable care for people with CF. Senator Collins cites this conversation as one of the factors reinforcing her decision to oppose the Senate health care bills over the summer.
This is the third 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 second award was given to Senator Michael Bennet (D-Colo.) for sponsoring 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.”
“Here in Maine and across the country, people with CF and other chronic diseases require access to high quality, specialized care to keep themselves healthy,” said Lisa O’Connor, executive director of the Northern New England chapter of the Cystic Fibrosis Foundation. “Senator Collins understands that fact, and stood strong to ensure our community can get the adequate, affordable care they need. We’re honored to give Senator Collins this award for her leadership and unwavering support.”
The Cystic Fibrosis Foundation is the world's leader in the search for a cure for cystic fibrosis. The CF Foundation funds more cystic fibrosis research than any other organization, and nearly every CF drug available today was made possible because of CF Foundation support. Based in Bethesda, Md., the CF Foundation also supports and accredits a national care center network that has been recognized by the National Institutes of Health as a model of care for a chronic disease. The Cystic Fibrosis Foundation is a donor-supported nonprofit organization.