Cystic Fibrosis Foundation Awards Sen. Susan Collins the Breath of Life Legislator Award

The Cystic Fibrosis Foundation awarded U.S. Sen. Susan Collins (R-Maine) the Breath of Life Legislator Award on Nov. 3 for her leadership in ensuring that people with cystic fibrosis have access to the adequate, affordable care they need to live full and healthy lives.

Nov. 6, 2017 | 3 min read

“The Cystic Fibrosis Foundation is proud to honor Sen. 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, Sen. Collins has proven herself time and again to be a champion for people with CF and their families.”

As Congress considered a series of health care bills over this past summer, Sen. 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, Sen. 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) and recently joining with colleagues to send a letter to the Senate Appropriations Committee requesting they make a strong commitment to funding for NIH in fiscal year 2018
  • 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

She's also currently co-sponsoring a bipartisan bill that keeps important protections in place for the CF community.

The award was presented by Stacey Morrison, the mother of a young son with CF. Morrison, along with her mother, spoke with Sen. Collins at a Fourth of July parade about the importance of access to adequate, affordable care for people with CF. Sen. Collins cites this conversation as one of the main factors contributing to her decision to oppose the Senate health care bills over the summer.

Stacey Morrison presented Sen. Susan Collins with the Breath of Life Legislator Award. (From left to right, Morrison, Collins, and Lisa O’Connor, executive director of the Northern New England CF Foundation chapter)

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-Rep. 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 Sen. 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.”

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