Coalition for Pulmonary Fibrosis Celebrates Landmark Year for Awareness, Advocacy, Research
SAN JOSE, Calif. Dec. 31 — The Coalition for Pulmonary Fibrosis (CPF) calls 2008 a year of substantial progress in advocacy, research support and awareness of a fatal disease that has no known cause, no FDA-approved treatment, and no cure — Pulmonary Fibrosis (PF).
The CPF was able to double its research grant funding through a partnership with the American Thoracic Society (ATS). The CPF/ATS partnership enables the search for treatments to assist patients who are suffering from this relentless and ultimately fatal disease. As many as 40,000 patients die each year to PF - the same number as are lost to breast cancer.
The organization drove a national advocacy effort leading to the introduction of the Pulmonary Fibrosis Research Enhancement Act (PFREA), and greatly enhanced its resources via expanded Internet campaigns, a fully redesigned website (http://www.coalitionforpf.org) and the publication of comprehensive, peer-reviewed patient education materials.
The landmark PFREA was introduced on July 23, 2008 in the U.S. House of Representatives by Rep. Brian Baird (D-WA) and Rep. Mike Castle (R-DE). The PFREA is the first legislation specifically seeking congressional funding for PF research, and would authorize $16 million to create a comprehensive national registry to help in understanding the cause and progression of the disease, which in turn would allow for improved standards of care and accelerated research. The bill also carries provisions to improve public awareness of PF and creates a National PF Advisory Board.
Rep. Baird lost his father to PF, and Rep. Castle lost his brother and sister to the devastating disease. The bill is expected to be reintroduced in the House early in 2009 and soon after in the Senate.
"We are very excited about the potential for congressional support which will accelerate efforts to conquer PF — a truly devastating disease that has seen a 156 percent increase in prevalence in the last six years. This is truly a significant move forward, both for patients currently fighting PF, and for all those who will be diagnosed in the future," said Mishka Michon, chief executive officer of the CPF.
