Pulmonary Fibrosis Research Enhancement Act of 2009 Introduced in 111th U.S. Congress
Landmark Bill Would Create National Patient Registry, Increase Public Awareness of Deadly Lung Disease
PF is a progressive and ultimately fatal lung disease that 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.
Reps. Baird and Castle have been working closely with the CPF since early 2007 on this legislation. They first introduced the PFREA in
Since 2002, the CPF has been leading a national advocacy effort toward 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 effort included a close collaboration with the late Congressman
“I am pleased to have worked with Representative Baird and the CPF to bring about this important legislation,” said Congressman Castle. “PF is an ultimately debilitating and fatal disease, and one that has taken people close to me. I remain dedicated to supporting public awareness and research efforts to eradicate this disease.”
The PFREA would also mandate the creation of a National PF Action Plan, in conjunction with the NIH and 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 PFREA’s passage.
“The fight to stop PF takes on new direction and new strength with the introduction of the Pulmonary Fibrosis Research Enhancement Act. Everyone dealing with PF owes a debt of gratitude to Congressmen Baird and Castle for bringing this landmark legislation to Congress,” said
“Neither my dad nor I had ever heard of PF prior to the day that he was diagnosed. That’s when the doctor informed us it was a death sentence,” said Congressman Baird. “Every 13 minutes, some family somewhere experiences the suffering that my father went through. We must stop that. This legislation takes an important step in searching for the cause of, and the cure for this dreaded disease.”
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.
Lastly, the PFREA mandates the establishment of 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.
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.
SOURCE Coalition for Pulmonary Fibrosis