Briefings & Testimonies
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Congressional Briefing Showcases CF Foundation Drug Development and Care Center Models
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.back to top
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
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 Congress can incentivize and accelerate the development of cures. The CF Foundation has provided expertise in a number of areas to help inform this effort.
Ensuring Access to Clinical Trials Act of 2015 (EACT)
The bi-partisan Ensuring Access to Clinical Trials Act of 2015 makes permanent the Improving Access to Clinical Trials Act of 2009 (IACT), a law enacted in 2010 that allows patients with rare diseases to participate in and benefit from clinical trials without fear of losing vital benefits. Sponsored by Senators Ron Wyden (D-OR), Orrin Hatch (R-UT), Sherrod Brown (D-OH) and Edward Markey (D-MA) as well as Representatives Lloyd Doggett (D-TX), Tom Marino (R-PA) and Jim McGovern (D-MA), this bill will permanently allow patients with cystic fibrosis and other rare diseases to receive up to $2,000 in compensation for participating in clinical trials without that compensation counting towards their income eligibility limits for SSI and Medicaid. The Cystic Fibrosis Foundation actively supported the Improving Access to Clinical Trials Act when it was introduced and advanced in 2009, and we are working to ensure that the law continues to eliminate barriers to clinical trial participation for the CF community.
Drug Development and Review
Read the Cystic Fibrosis Foundation’s comments and proposals to the National Institutes of Health (NIH), Food and Drug Administration (FDA) and other related agencies on streamlining the drug development process to speed safe and effective therapies to those with cystic fibrosis.
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.
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.