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Co-Sponsorship of Pulmonary Fibrosis Research Enhancement Act 2009 Increases to 27 Members
Date:5/7/2009

SAN JOSE, Calif., May 7 /PRNewswire-USNewswire/ -- The CPF today announced that the Pulmonary Fibrosis Research Enhancement Act (PFREA) (H.R. 1079) - which would authorize $16 million in new federal funding for pulmonary fibrosis (PF) research - has now gained the support of 27 Members of the U.S. House of Representatives.

The PFREA is first of its kind legislation to improve research and awareness of pulmonary fibrosis, a terminal lung disease with no known cause, no FDA approved treatment and no cure. (For more information on PF, visit www.coalitionforpf.org). The PFREA was reintroduced on February 13, 2009 by Representative Brian Baird (D-WA) and Representative Mike Castle (R-DE).

"The Pulmonary Fibrosis Research Enhancement Act is not only important to the 128,000 patients who suffer from this devastating lung disease and desperately need help in their fight, it is critical to the researchers working on the front lines," said Mishka Michon, Chief Executive Officer of the CPF. "The passage of this bill will help the research move forward and will escalate our search for a treatment and a cure."

The PFREA was originally introduced in Congress on July 22, 2008 by Rep. Baird and Rep. Castle. Congressman Baird lost his father to pulmonary fibrosis, and Congressman Castle lost his brother and sister to the devastating disease. A substantial portion of the $16 million authorization would be used to establish a comprehensive national registry of PF patients. The Act would also:

  • Mandate the creation of a National PF Action 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. The Action Plan would be provided to the Director of the NIH within one year of the Act's passage.
  • Establish 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(s) and progression of PF, improve standards of care, accelerate research, and develop new therapies sooner.
  • Establish 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.

To view the legislation in its entirety, please visit http://thomas.loc.gov/ and type in "Pulmonary Fibrosis Research Enhancement Act" in the search box for bills or search under bill number "H.R. 1079".

The current status of H.R. 1079 is that it has been referred to the House Energy & Commerce Committee. To date, the following Members of Congress have agreed to co-sponsor the bill:

    Boccieri, John A. (OH-16)
    Castle, Michael N. (DE)
    Dicks, Norman (WA-6)
    Goodlatte, Bob (VA-6)
    Hall, John J. (NY-19)
    Kaptur, Marcy (OH-9)
    Latham, Tom (IA-4)
    Lofgren, Zoe (CA-16)
    McGovern, James P (MA-3)
    Moran, James P. (VA-8)
    Pascrell, Bill, Jr. (NJ-8)
    Space, Zachary T. (OH-18)
    Wolf, Frank R. (VA-10)
    Boren, Dan (OK-2)
    Deal, Nathan (GA-9)
    Gerlach, Jim (PA-6)
    Gordon, Bart (TN-6)
    Harman, Jane (CA-36)
    Kirk, Mark Stephen (IL-10)
    LaTourette, Steven C. (OH-14)
    Marshall, Jim (GA-8)
    Minnick, Walter (ID-1)
    Napolitano, Grace F. (CA-38)
    Sarbanes, John P (MD-3)
    Tierney, John F. (MA-6)
    Young, C.W. Bill (FL-10)

The incidence and prevalence of PF has risen more than 150 percent in the past seven years. Despite these sharp increases, PF research funding levels remain stagnant. The federal government (NIH) spends an estimated $21 million annually on PF research. By comparison, it spends $85 million annually studying cystic fibrosis, a disease that is four times less common than PF, and $48 million on Lou Gehrig's disease, a disease five times less common.

The CPF is actively advocating for the Bill's passage, and is asking its 17,000 members, and all those who are affected by PF, to voice their support for HR 1079 by visiting http://www.coalitionforpf.org/cpf_advocacy.php and becoming a CPF advocate. By joining the ACT campaign, advocates will become part of an army of volunteers who are contacting Congress, national health policymakers and the media to educate them about the PF. Every three months, members will receive free the CPF's ACT Action Alert, a newsletter detailing the advocacy efforts and outlining ways you can help. The CPF's advocacy program allows members to easily contact their Member of Congress immediately to voice their support. For further information, please visit the CPF at www.coalitionforpf.org, call us at 888-222-8541, or email us at info@coalitionforpf.org.

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 17,000 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.


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SOURCE Coalition for Pulmonary Fibrosis
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