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| Pulmonary Fibrosis Research Enhancement Act of 2009 Introduced in 111th U.S. Congress |
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| Landmark Bill Would Create National Patient Registry, Increase Public Awareness of Deadly Lung Disease |
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The Coalition for Pulmonary Fibrosis (CPF) is excited to announce a pivotal time in our national pulmonary fibrosis (PF) advocacy program --the introduction of the Pulmonary Fibrosis Research Enhancement Act of 2009 (PFREA) in the 111th Congress. The PFREA, H.R. 1079, represents the first Congressional legislation to increase federal funding of PF -- a progressive and ultimately fatal disease affecting more than 128,000 Americans. The PFREA was introduced by two members of the House of Representatives who know personally the impact of PF. Congressmen Brian Baird (D-WA) and Mike Castle (R-DE), have both lost family members to the disease. The bill will fund the creation of a national PF patient registry, and call on the National Institutes of Health (NIH) to expand and intensify PF research efforts.
PF is a progressive and ultimately fatal lung disease that claims the lives of 40,000 Americans each year -- the same number as breast cancer -- and kills an estimated two-thirds of patients within five years of diagnosis. There is no known cause, no FDA approved treatment and no cure for PF. For more information on PF, visit www.coalitionforpf.org.
Reps. Baird and Castle have been working closely with the CPF since early 2007 on this legislation. They first introduced the PFREA in July 2008 in the 110th Congress, and by the end of the year had secured 30 members of Congress to serve as co-sponsors. Co-sponsors of the newly introduced bill include Rep. Nathan Deal (R-GA), Rep. Norman Dicks (D-WA), Rep. Jim Gerlach (R-PA), Rep. Jane Harman (D-CA), Rep. Marcy Kaptur (D-OH), Rep. Mark Kirk (R-IL), Rep. Steven LaTourette (R-OH), Rep. Zoe Lofgren (D-CA), Rep. Zack Space (D-OH), Rep. John Tierney (D-MA) and Rep. Bill Young (R-FL).
Since 2002, the CPF has been leading a national advocacy effort toward the National Institutes of Health (NIH) and the Centers for Disease Control (CDC) to increase research funding for PF and accelerate efforts to find a cure for this devastating lung disorder. The effort included a close collaboration with the late Congressman Charlie Norwood, who lost his battle with PF in 2007. The CPF worked with Rep. Norwood to secure passage of H.R. 182 in 2007, which was the first-ever Congressional recognition of the need for increased research funding and improved public awareness of PF in the United States. This resolution laid the groundwork for the PFREA to become a reality.
"I am pleased to have worked with Representative Baird and the CPF to bring about this important legislation," said Congressman Castle. "PF is an ultimately debilitating and fatal disease, and one that has taken people close to me. I remain dedicated to supporting public awareness and research efforts to eradicate this disease."
The PFREA would also mandate the creation of a National PF Action Plan, in conjunction with the NIH and 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 PFREA's passage.
"The fight to stop PF takes on new direction and new strength with the introduction of the Pulmonary Fibrosis Research Enhancement Act. Everyone dealing with PF owes a debt of gratitude to Congressmen Baird and Castle for bringing this landmark legislation to Congress," said Mishka Michon, Chief Executive Officer for the CPF. "We will be mobilizing all our members to contact their legislators on behalf of the more than 128,000 people who now have PF so that we can push for the passage of the bill -- we will do everything we can to optimize the opportunity for a positive outcome."
"Neither my dad nor I had ever heard of PF prior to the day that he was diagnosed. That's when the doctor informed us it was a death sentence," said Congressman Baird. "Every 13 minutes, some family somewhere experiences the suffering that my father went through. We must stop that. This legislation takes an important step in searching for the cause of, and the cure for this dreaded disease."
The PFREA also calls for establishment of 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 and progression of PF, improve standards of care, accelerate research and find ways for new therapies to be developed sooner.
Lastly, the PFREA mandates the establishment of 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.
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