Briefings & Testimonies

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Congressional Briefing Showcases CF Foundation Drug Development and Care Center Models


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

On February 11, 2014, the Cystic Fibrosis Foundation hosted a Congressional briefing to discuss 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.

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To ensure the voices of the CF community are heard in Washington, the Cystic Fibrosis Foundation submits testimony, comments and letters to Congress and federal agencies on health care policies vital to those with cystic fibrosis. Below, you will find statements that advocate for the CF community’s interests in three areas — federal investment in cystic fibrosis research and drug review, the development and review of CF treatments and health care reform.

Federal Investment in CF Research and Drug Review:

21st Century Cures Initiative

In 2014, Energy and Commerce Committee Chair Fred Upton (R-Mich.) and Representative Diana DeGette (D-Colo.) are spearheading the 21st Century Cures Initiative, an effort aimed at developing policies to accelerate the discovery, development and delivery of treatments and speed biomedical innovation. Through this initiative, the Energy and Commerce Committee is soliciting input from industry, patients, researchers, government agencies and other stakeholders about ways the government can incentivize and accelerate the development of cures. The CF Foundation has provided expertise in a number of areas to help inform this effort.

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Health Care Reform and Regulatory Guidance

View the Cystic Fibrosis Foundation’s testimony, comments and letters highlighting the need for access to sophisticated, specialized care and health coverage for people with cystic fibrosis.

  • CHIP Reauthorization – Underscores the value of the Children’s Health Insurance Program for children with CF in ensuring that these patients have access to quality, specialized CF care, and asks Congressional leadership to reauthorize funding so that states may continue to provide this coverage to children with CF and other life-threatening chronic illnesses.

  • The Role of Managed Care Plans in the Medicaid Program – Asks Congressional leadership to consider the needs of medically complex, rare disease populations when determining best practices for the shift to managed care plans in Medicaid programs by limiting specific barriers to treatment and coverage that can be especially detrimental to these individuals.

  • Newborn Screening – Emphasizes the importance of newborn screening programs in diagnosing CF and delivering early, lifesaving treatments and urges Senate leaders to pass legislation to continue funding for this vital public health program.

  • Specialty Practitioner Payment Model Opportunities – Highlights the CF care center network as a model of efficient, effective care delivery and discusses the challenges and opportunities associated with improving payment and delivery for CF care through episode-based bundles.

  • Medicare Part D Access to Immunosuppressants – Opposes a proposal by the Centers for Medicare and Medicaid Services that would hinder access to immunosuppressant medication for post-transplant patients.

  • Federally-Facilitated Marketplaces – Urges the Centers for Medicare and Medicaid Services to ensure affordable access to CF care centers and treatments in federal health insurance marketplaces.
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Social Security Disability Programs

In February 2013, the Social Security Administration (SSA) proposed changes to the criteria it uses to determine if a patient with cystic fibrosis is eligible for disability benefits. The CF Foundation is concerned that some of these changes could hinder access to disability benefits for CF patients. View below letters to the SSA from the Cystic Fibrosis Foundation, cystic fibrosis care center directors and members of Congress expressing concern about the proposed changes. A final decision regarding these changes is expected from the Social Security Administration in 2015.

Learn more about our briefings and testimonies prior to 2014. 

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Updated: 2/5/2015