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| Co-Sponsorship of Pulmonary Fibrosis Research Enhancement Act Increases to 27 Members of Congress |
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November 10, 2008 - Co-Sponsorship of Pulmonary Fibrosis Research Enhancement Act Increases to 27 Members of Congress
The CPF today announced that the Pulmonary Fibrosis Research Enhancement Act (PFREA) (H.R. 6567) - which would authorize $16 million in new federal funding for pulmonary fibrosis (PF) research - has now gained the support of 27 Members of the U.S. House of Representatives.
PFREA is first of its kind legislation to improve research and awareness of pulmonary fibrosis, a terminal lung disease with no known cause, no FDA approved treatment and no cure. (For more information on PF, visit www.coalitionforpf.org). The PFREA is expected to be re-introduced in the 111th Congress in early 2009. However, additional Members of Congress could be added on as co-sponsors in the current Congress if there is a lame duck Congressional session.
The PFREA was originally introduced in Congress on July 22, 2008 by Representative Brian Baird (D-WA) and Representative Mike Castle (R-DE). Congressman Baird lost his father to pulmonary fibrosis, and Congressman Castle lost his brother and sister to the devastating disease. A substantial portion of the $16 million authorization would be used to establish a comprehensive national registry of PF patients. The Act would also:
- Mandate the creation of a National PF Action Plan, in conjunction with the National Institutes of Health (NIH) and the Centers for Disease Control (CDC), which would focus on strategies to improve public awareness of PF, and accelerate patient and medical education strategies. The Action Plan would be provided to the Director of the NIH within one year of the Act’s passage.
- Establish a National PF Advisory Board, which would make recommendations to the NIH and CDC concerning the structure and management of a PF patient registry. The goal of the registry would be to improve understanding of the cause(s) and progression of PF, improve standards of care, accelerate research, and develop new therapies sooner
- Establish a National Summit on PF, to foster collaboration between Federal Agencies, researchers, patients and advocates to identify new approaches to research and treat PF. The Summit would be held every three years.
To view the legislation in its entirety, please visit http://thomas.loc.gov/ and type in “Pulmonary Fibrosis Research Enhancement Act” in the search box for bills.
To date, the following Members of Congress have agreed to co-sponsor H.R. 6567:
- Thomas Allen - Maine
- Rob Bishop - Utah
- Earl Blumenauer - Oregon
- Dennis Cardoza - California
- Mike Castle - Deleware
- Nathan Deal - Georgia
- Diana DeGette - Colorado
- Jim Gerlach - Pennsylvania
- Virgil Goode - Virginia
- Bob Goodlatte - Virginia
- Bart Gordan - Tennessee
- Jane Harman- California
- Marcy Kaptur - Ohio
- Mark Kirk - Illinois
- Tom Latham - Louisiana
- Steven LaTourette - Ohio
- Zoe Lofgen - California
- Jim Marshall - Georgia
- Bill Pascrell - New Jersey
- David Price - North Carolina
- Jackie Speier - California
- John Tierney - Massachussetts
- Henry Waxman - California
- Peter Welch - Vermont
- Robert Wexler - Florida
- Frank Wolf - Virginia
- C.W. "Bill" Young - Florida
The CPF is actively advocating for the Bill’s passage, and is asking its 17,000 members, and all those who are affected by PF, to voice their support for HR 6567 by visiting http://www.coalitionforpf.org/cpf_advocacy.php and becoming a CPF advocate. By joining the ACT campaign, you will become part of an army of volunteers who are contacting Congress, national health policymakers and the media to educate them about the PF. Every three months, members will receive free the CPF's ACT Action Alert, a newsletter detailing the advocacy efforts and outlining ways you can help. The CPF’s advocacy program allows you to easily contact your Member of Congress immediately to voice your support. For further information, please visit the CPF at www.coalitionforpf.org, call us at 888-222-8541, or email us at info@coalitionforpf.org.
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