People with cystic fibrosis and their families have faced significant cost burdens due to copay accumulator programs. Get caught up on these programs and what they mean for you and your loved ones.
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The law signals major improvements in health care affordability for people with CF.
Vertex’s copay assistance changes add an undue burden for people living with an already expensive, challenging lifelong disease.
On behalf of the CF community, the Cystic Fibrosis Foundation has expressed its concern to the Social Security Administration (SSA) about a proposed rule that could make it more difficult for people with CF to receive disability benefits.
In an effort led by Congressional Cystic Fibrosis Caucus co-chairs Representatives Edward Markey (D-MA) and Tom Marino (R-PA) and Senator Michael Bennet (D-CO), 37 key members of Congress sent letters to the Social Security Administration (SSA) expressing their concern about a proposed rule that could make it more difficult for people with CF to receive disability benefits.
After more than six years of dedicated service as co-chair of the Congressional Cystic Fibrosis Caucus, Rep. Edward Markey (D-MA) has stepped down from the post as he assumes new responsibilities in the U.S. Senate. Rep. Jim McGovern (D-MA) will replace Markey, joining Rep. Tom Marino (R-PA) as co-chair of the Caucus.
After more than six years of dedicated service as co-chair of the Congressional Cystic Fibrosis Caucus, Rep. Edward Markey (D-MA) has stepped down from the post as he assumes new responsibilities in the U.S. Senate. Rep. Jim McGovern (D-MA) will replace Markey, joining Rep. Tom Marino (R-PA) as co-chair of the Caucus.
The Cystic Fibrosis Foundation participated in a Congressional briefing hosted by Friends of Cancer Research on July 24 to educate members of the U.S. Senate about new processes developed by the FDA to speed the approval of breakthrough therapies.
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.
More than 60 CF Foundation volunteers came together in Washington, D.C. to speak with their elected officials on behalf of friends and family members affected by the disease during March on the Hill, the Cystic Fibrosis Foundation's signature annual advocacy event.