Legislation sets up advisory board, patient registry
Washington, DC - Legislation introduced today in the U.S. Senate would bring much-needed attention to a progressive and generally fatal disease that takes the lives of 40,000 people each year. Idaho Senator Mike Crapo joined with Washington Senator Patty Murray to introduce the Pulmonary Fibrosis Research Enhancement Act (PFREA), a companion measure to H.R. 1079, which was introduced in the U.S. House of Representatives in February of last year.
Idiopathic pulmonary fibrosis (PF) results in scarring of the lungs and thickening of the lining. This causes irreversible damage to the tissue's ability to transport oxygen, ultimately robbing a person of the ability to breathe. In the United States, 128,000 people have been diagnosed with PF, with around 48,000 new cases each year. PF is five times more common than cystic fibrosis and Lou Gehrig's Disease (ALS), yet it does not have the same public recognition and research support.
The measure, S. 3703, establishes a national advisory board, which would be tasked with making recommendations to establish a national patient registry. Additionally, the measure requires the federal government (through the Centers for Disease Control and the advisory board) to prepare a public awareness and patient education initiative about PF.
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 first step in finding a cure for the many people who suffer from PF. This bipartisan effort with Senator Murray underscores the importance of this critical legislation."
"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."
The legislation is supported by the Coalition for Pulmonary Fibrosis, which includes the American Thoracic Society, the Genetic Alliance, the Caring Voice Coalition, the National Coalition of Autoimmune Patient Groups and the National Organization for Rare Disorders, along with National Jewish, the National Heart, Lung & Blood Institute at the National Institutes of Health, the Cleveland Clinic Foundation, Johns Hopkins University School of Medicine and the Mayo Clinic.
The measure has been referred to Senate HELP Committee for further action.