Pulmonary Fibrosis Foundation Proudly Endorses the Introduction of the Pulmonary Fibrosis Research Enhancement Act in the United States Senate
CHICAGO, Aug. 4 /PRNewswire-USNewswire/ -- The Pulmonary Fibrosis Foundation (PFF) today announced that the Pulmonary Fibrosis Research Enhancement Act (PFREA) was introduced in the United States Senate. The PFREA was introduced by Senators Patty Murray (D-WA) and Mike Crapo (R-ID), and the PFF has offered its unconditional endorsement to pass this important legislation on behalf of the pulmonary fibrosis community.
"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 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."
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 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."
"We are deeply grateful to Senators Murray and Crapo for leading the drive to pass this groundbreaking legislation," said Daniel Rose, MD, President of the PFF. "We are excited to work closely with each Senator, as well as our national membership, to build the necessary support to pass the PFREA as soon as possible. We're also grateful to the law firm of Hogan Lovells for their pro-bono guidance in helping the PFF participate in this historic legislative process."
For PFF Executive Director Leanne Storch, herself a PF patient, the PFREA carries particular importance in the PFF's efforts to help future PF patients. "While I may not benefit directly from this legislation as a patient, as an advocate I am proud to know that the work of the PFF, and its membership of thousands of patients and families, may help future patients and researchers fight PF."
Ganesh Raghu, Director of the Pulmonary Fibrosis Program, and Medical Director of the Lung Transplant Program at the University of Washington Chest Clinic (Seattle, WA), said, "In addition to creating a much needed national registry of patients with PF, this Bill's passage would increase the awareness of the challenges associated with the treatment of this disease, and hopefully encourage continued funding for critically important research in this field."
"This Act is a crucial step towards increasing research efforts and resources towards finding a treatment and a cure," said Imre Noth, MD, Associate Professor of Medicine and Director of the Pulmonary Clinic at the University of Chicago. "The PF community desperately needs the kind of unified effort and support offered by this legislation."
The PFF is asking every PF patient, family member, or others who have been impacted by pulmonary fibrosis to help secure additional co-sponsors of the PFREA by contacting their U.S. Senator in the coming weeks, including organizing in-district meetings during the Congressional recess. Complete information on this advocacy effort is available on the home page of the Pulmonary Fibrosis Foundation at www.pulmonaryfibrosis.org. Interested advocates without internet access can contact the PFF directly at 888-PFF-ORG1 (888-733-6741) to learn how to contact their Senator.
About the Pulmonary Fibrosis Research Enhancement Act
The PFREA authorizes $16 million to establish the first national patient registry for pulmonary fibrosis (PF), establish a national PF advisory board, and call for a national PF education and awareness plan for this deadly disease. The PFREA would also amend the Public Health Service Act to encourage the National Institutes of Health to expand, intensify, and coordinate the activities of the Institute with respect to research on PF, as appropriate.
PFREA was previously introduced in the United States House of Representatives (H.R. 1079) by Representative Brian Baird (D-WA)and Michael Castle (R-DE). The House bill currently has 136 bi-partisan co-sponsors (including 96 Democrats and 40 Republicans). Action on the House bill is pending in the Energy & Commerce Subcommittee on Health.
About Pulmonary Fibrosis
According to the National Institutes for Health (NIH), IPF is a condition in which over a period of time the lung tissue becomes thickened, stiff, and scarred. The development of the scar tissue is called fibrosis. As the lung tissue becomes scarred and thicker, the lungs lose their ability to transfer oxygen into the bloodstream. As a result, the brain and other organs don't get the oxygen they need. In some cases, doctors can determine the cause of the fibrosis, but in most cases, there is not a known cause. When there is no known etiology for the fibrosis (and certain pathologic criteria are met) the disease is called idiopathic pulmonary fibrosis or IPF. IPF affects approximately 200,000 Americans and an estimated 40,000 Americans pass away from IPF each year.
About the Pulmonary Fibrosis Foundation
The Pulmonary Fibrosis Foundation is a 501(c)(3) non-profit organization whose mission is to find a cure for idiopathic pulmonary fibrosis (IPF) by funding research, advocating for pulmonary fibrosis issues, promoting disease awareness, and providing a compassionate environment for supporting patients and their loved ones. We aim to accomplish this by working with the medical community to drive new research, increase research funding, by representing the needs of our constituents in Washington DC through national advocacy, and by developing caring relationships with patients and their families throughout the course of their disease. Since the inception of the Foundation, it has funded or is committed to fund $3,000,000 in basic research. For more information please visit www.pulmonaryfibrosis.org or call (888) 733-6741.
Contact: Dolly Kervitsky, Pulmonary Fibrosis Foundation,
Source: Pulmonary Fibrosis Foundation