Landmark Bill Would Create National Patient Registry, Increase Public Awareness of Deadly Lung Disease; House bill has 136 co-sponsors
WASHINGTON, Aug. 4 /PRNewswire-USNewswire/ -- The Coalition for Pulmonary Fibrosis (CPF) announced today the Pulmonary Fibrosis Research Enhancement Act (PFREA) has been introduced by Senators Patty Murray (D-WA) and Mike Crapo (R-ID) in the U.S. Senate. The bill will fund the creation of a national Pulmonary Fibrosis (PF) patient registry, and call on the National Institutes of Health (NIH) to expand and intensify PF research efforts. The companion bill in the U.S. House of Representatives has been gaining steady momentum with 136 bipartisan co-sponsors to date.
The PFREA 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 in the House in early 2009 by Congressmen Brian Baird (D-WA) and Congressman Mike Castle (R-DE), who have each lost family members to the disease.
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 no known cause, no FDA approved treatment and no cure for PF. For more information on PF, visit www.coalitionforpf.org.
"Pulmonary Fibrosis has devastated so many families across the country, and we need to do everything we can to eradicate this terrible disease once and for all," said Senator Patty Murray. "I was proud to work with Senator Crapo and Representative Baird to introduce this critical bill that would create a National PF Education and Awareness Plan and national PF patient registry. And I am going to keep working to pass this bill and help PF patients and their families."
The PFREA would also mandate the creation of a National PF Education and Awareness 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.
"We are so appreciative to Senator Murray and Senator Crapo for their work supporting this important legislation," said Mishka Michon, Chief Executive Officer for the CPF. "A national registry is critical to moving the science forward in so many diseases and has been successful in breast cancer and ALS. With no treatment options for our patients and one third of them dying each year, this registry will provide the foundation for research that is clearly missing in Pulmonary Fibrosis."
Senator Mike Crapo said, "Pulmonary fibrosis is a rare disease with very few treatment options and no known cure. This bill and the establishment of a patient registry will be an important first step in finding a cure for the many people who suffer from PF. I am pleased to join my colleague Senator Murray in introducing this critical legislation."
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.
Since 2002, the CPF has been leading a national advocacy effort toward the NIH and the 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 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.
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