Pulmonary Fibrosis Bill Introduced

In July, the Coalition for Pulmonary Fibrosis worked with members of Congress to introduce legislation that would increase federal funding of pulmonary fibrosis research. If passed, the Pulmonary Fibrosis Research Enhancement Act (H.R. 2505/ S.1350) would change the Public Health Service Act by creating a pulmonary fibrosis registry and advisory board, increasing disease surveillance and directing the National Institutes of Health and Centers for Disease Control and Prevention to develop education and awareness plans.

“We are very grateful for the support of Senators Chris Coons (D-DE) and Mike Crapo (R-ID) and Representatives Erik Paulsen (R-MN) and Tammy Baldwin, as well as the bill’s many co-sponsors in both houses of Congress,” said Teresa Barnes, vice president of patient outreach and advocacy at the Coalition for Pulmonary Fibrosis and chair of the ATS Public Advisory Roundtable. “We look forward to working with legislators and organizations like the ATS to raise awareness about the disorder among physicians and members of the general public.”

The Pulmonary Fibrosis Research Enhancement Act is the first bill to propose increasing funding for research on pulmonary fibrosis, a disorder for which there is currently no treatment or cure. Experts estimate that the disease affects about 128,000 people in the United States alone.

“For a disease that claims the lives of 40,000 Americans every year, we know far too little about pulmonary fibrosis,” said Senator Coons at a press conference following the bill’s reintroduction in Washington, D.C. “I am proud to stand today with my colleagues from both sides of the aisle and both chambers of Congress to fight for a cure for pulmonary fibrosis. We need to lead in a bipartisan manner to help researchers get a handle on this disease and find a cure. This bill will help do that.” 

The ATS and its Public Advisory Roundtable will highlight the benefits of the pulmonary fibrosis legislation during “Lung Disease Week at the ATS” from September 18 to 24 through a number of resources, including webinars, patient stories and other educational materials.