Landmark Bill Introduced in Senate and House Would Create National Patient Registry, Increase Public Awareness of Lethal Lung Disease
WASHINGTON, July 12, 2011 /PRNewswire-USNewswire/ -- The Coalition for Pulmonary Fibrosis (CPF) announced today the Pulmonary Fibrosis Research Enhancement Act (PFREA) has been introduced in the Senate by Senators Chris Coons (D-DE) and Mike Crapo (R-ID) in the U.S. House of Representatives by Rep. Erik Paulsen (R-MN) and Rep. Tammy Baldwin (D-WI). The PFREA would increase federal funding of research in PF -- a progressive and lethal lung disease which causes suffocating scarring and affects more than 128,000 Americans. The bill will fund the creation of a national PF patient registry, and call on the National Institutes of Health (NIH) and the Centers for Disease Control (CDC) to expand and intensify PF research efforts.
"As more and more Americans are diagnosed with Pulmonary Fibrosis each year, we have been unable to make the necessary advancements that would cure and prevent this debilitating disease," said Rep. Paulsen. "This legislation is essential to broaden our understanding of the disease and how it acts and reacts within the body, thus paving a way for a cure for the more than 200,000 Americans living with pulmonary fibrosis."
The PFREA represents the first Congressional legislation to increase federal funding of efforts to treat Pulmonary Fibrosis (PF) -- a progressive and ultimately fatal disease affecting more than 128,000 Americans. PF 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 known cause, no FDA approved treatment and no cure for PF. For more information on PF, visit www.coalitionforpf.org.
"For a disease that claims 40,000 Americans every year, we know far too little about Pulmonary Fibrosis," Senator Coons said. "I am proud to pick up the mantle from Congressman Castle and stand today with my colleagues from both sides of the aisle and both chambers of Congress to fight for a cure for Pulmonary Fibrosis. We need to lead in a bipartisan manner to help researchers get a handle on this disease and find a cure. This bill will help do that."
The PFREA would also mandate the creation of a National PF Education and Awareness Plan, in conjunction with the NIH and CDC and, which would focus on strategies to improve public awareness of PF, and accelerate patient and medical education strategies.
"This is an important step forward in the fight to stop PF. The patient and medical community is extremely grateful to Senators Coons and Crapo and Representatives Paulsen and Baldwin for bringing this legislation to Congress. We hope to see as extensive a list of co-sponsors as we did in the previous Congress," said Mishka Michon, Chief Executive Officer for the CPF.
"There is no known cause and no FDA-approved treatments for pulmonary fibrosis, yet research funding has remained stagnant," Senator Crapo said. "This legislation is an important first step to understanding the nature of IPF and finding treatment options to a disease for which there is no known cure."
"Unfortunately, we know little about pulmonary fibrosis, a debilitating and deadly disease that takes the lives of thousands of Americans each year. This legislation is critical to increasing our understanding of IPF and to finding treatment options and, potentially, a cure. I look forward to working with my colleagues in both chambers and on both sides of the aisle on this important bill," said Congresswoman Baldwin.
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.
Now in its 10th year, the CPF has been leading a national advocacy effort focused on 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 for several years. The CPF annually convenes a National PF Awareness Week which brings patients and patient advocates to Capitol Hill to meet with Members of Congress and their staffs. This year, National PF Awareness Week will be held September 18-24.
The CPF's advocacy work began in a close collaboration effort 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 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. PFREA was introduced in 2009 by former Rep. Brian Baird and Rep. Mike Castle in the House and in 2010 by Sen. Patty Murray and Sen. Mike Crapo. At the close of the 111th Congress, the bill had 149 members of the House signed on and seven members of the Senate.
About Pulmonary Fibrosis (PF)
Pulmonary Fibrosis (PF) is a lung disorder characterized by a progressive scarring -- known as fibrosis -- and deterioration of the lungs, which slowly robs its victims of their ability to breathe. Approximately 128,000 Americans suffer from PF, and there is currently no known cause or cure. An estimated 48,000 new cases are diagnosed each year. PF is difficult to diagnose and an estimated two-thirds of patients die within five years of diagnosis. Sometimes PF can be linked to a particular cause, such as certain environmental exposures, chemotherapy or radiation therapy, residual infection, or autoimmune diseases such as scleroderma or rheumatoid arthritis. However, in many instances, no known cause can be established. When this is the case, it is called idiopathic pulmonary fibrosis (IPF).
About the CPF
The CPF is a 501(c)(3) nonprofit organization, founded in 2001 to accelerate research efforts leading to a cure for pulmonary fibrosis (PF), while educating, supporting, and advocating for the community of patients, families, and medical professionals fighting this disease. The CPF funds promising research into new approaches to treat and cure PF; provides patients and families with comprehensive education materials, resources, and hope; serves as a voice for national advocacy of PF issues; and works to improve awareness of PF in the medical community as well as the general public. The CPF's nonprofit partners include many of the most respected medical centers and healthcare organizations in the U.S. With more than 24,000 members nationwide, the CPF is the largest nonprofit organization in the U.S. dedicated to advocating for those with PF. For more information please visit www.coalitionforpf.org or call (888) 222-8541.
SOURCE Coalition for Pulmonary Fibrosis