Advocates to Meet with 40 Key Congressional Committee Members and Staffers September 15 & 16
WASHINGTON, Sept. 14 /PRNewswire-USNewswire/ -- This week, the Coalition for Pulmonary Fibrosis (CPF) will hold its seventh annual National Pulmonary Fibrosis (PF) Awareness Week. The official dates are September 14-21. In the more than 40 meetings to be held with Members of Congress and their staffers, the CPF will be advocating for passage of the Pulmonary Fibrosis Research Enhancement Act (PFREA - H.R. 1079) and building awareness of the disease and the urgent need for research to find a cure.
The majority of the Capitol Hill meetings will take place with Members who serve on the Energy & Commerce committee and on the Energy & Commerce subcommittee on health. The Energy & Commerce committee is the committee of jurisdiction for the PFREA.
Many CPF patients and members have helped build a grassroots program by directly requesting that their Members of Congress meet with the CPF on their behalf since most of them are too ill to travel to the U.S. Capitol to advocate for themselves. Others visited with their Members of Congress during the August recess or are campaigning for research on PF by writing letters to members. Some patients, medical professionals and PF support groups are holding their own local events to celebrate National PF Awareness Week.
"The urgency of the campaign is that the disparity of federal investment in PF compared to other diseases that realize far fewer deaths and have longer life expectancies, means a far longer wait for a possible cure. The wait for funding is costing 40,000 lives each year, the same number of lives lost to breast cancer," said CPF Chief Executive Officer.
The CPF has been working closely with Congressman Brian Baird (D-WA) and Congressman Mike Castle (R-DE) on this historic, bi-partisan legislation that would authorize $16 million in new federal funding to create the first national patient registry for PF, and provide much needed support for research into the deadly lung disease. The PFREA was introduced in the U.S. House of Representatives in February and is expected to soon be introduced in the U.S. Senate.
"We are pleased to meet with Members of these key committees and further garner support for the Pulmonary Fibrosis Research Enhancement Act," said Michon. "Our advocates understand firsthand the devastation of PF and they are proud to make the voices heard of more than 128,000 patients nationwide."
The CPF has celebrated National PF Awareness Week for the past six years, visiting representatives on Capitol Hill with patients and family members participating and telling their stories. Over the years, the CPF and its advocates have met with hundreds of Members of Congress. As a result of these efforts, the CPF was recognized for its work on behalf of the PF community through the passage H.R. 42, which passed the House unanimously in 2007. The Senate version of the concurrent resolution, H.R.182, also passed 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's Campaign ACT
Since 2002, the CPF has been leading a national advocacy effort directed toward Congress, 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 CPF has also actively advocated for passage of legislation important to the PF community in the areas of Medicare and Social Security coverage. The CPF as well as its National PF Awareness Week have been formally recognized on Capitol Hill, most recently with the 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 introduction of the Pulmonary Fibrosis Research Enhancement Act in 2008 and again in 2009.
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 19,000 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|
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