FOR IMMEDIATE RELEASE: July 12th, 2011

Bipartisan group of Senators, Representatives introduce bills to strengthen America’s fight against pulmonary fibrosis

40,000 American lives are claimed each year by this still largely unknown disease

Legislation will enhance research, prevention, and awareness activities

WASHINGTON – A bipartisan team of Senators and Representatives introduced bills in both chambers of Congress Tuesday to strengthen America’s fight against pulmonary fibrosis, which claims the lives of 40,000 Americans each year. The Pulmonary Fibrosis Research Enhancement Act of 2011 is designed to enhance research, prevention, and awareness activities around the disease, creating a national registry, encouraging federal research at the National Institutes of Health, and creating a national action plan.

Pulmonary fibrosis is a relentlessly progressive, ultimately fatal disease that affects the lungs and a person’s ability to breathe. There is no known cause of pulmonary fibrosis, it has no cure, and there are currently no FDA-approved treatments.  Most patients with pulmonary fibrosis live only three to five years after being diagnosed with pulmonary fibrosis.  In the United States alone:

• More than 200,000 people are living with pulmonary fibrosis;
• 48,000 individuals are diagnosed with pulmonary fibrosis each year;
• As many as 40,000 die each year.

U.S. Senators Chris Coons (D-Del.), Mike Crapo (R-Idaho), Patty Murray (D-Wash.), and Mark Kirk (R-Ill.), introduced the bill in the Senate. U.S. Representatives Erik Paulsen (R-Minn.) and Tammy Baldwin (D-Wis.) introduced the bill in the House. Joining several of the lawmakers at a press conference announcing the bills Tuesday was former U.S. Representative Mike Castle (R-Del.), who worked together with former Representative Brian Baird (D-Wash.) for years to advance similar legislation in the House.

“For a disease that claims 40,000 Americans every year, we know far too little about pulmonary fibrosis,” Senator Coons said. “I am proud to pick up the mantle from Congressman Castle and 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.”

“There is no known cause and no FDA-approved treatments for pulmonary fibrosis, yet research funding has remained stagnant,” Senator Crapo said. “This legislation is an important first step to understanding the nature of idiopathic pulmonary fibrosis and finding treatment options to a disease for which there is no known cure.”

"Pulmonary fibrosis has devastated so many families across the country, and we need to keep working to eradicate this terrible disease once and for all," Senator Murray said. "I am proud to cosponsor this critical legislation that will educate the public about this disease and will help PF patients and their families in my home state of Washington and across the country."

"As someone who has been personally impacted by the devastating effects of Pulmonary Fibrosis, I believe we need to do everything we can to research potential causes of this disease and how to treat it," Senator Kirk said.  "I lost my father to Pulmonary Fibrosis and hope that this bill will move us one step closer to finding a cure through the expansion of research and a national registry." 

“As more and more Americans are diagnosed with Pulmonary Fibrosis each year, we have been unable to make the necessary advancements that would cure and prevent this debilitating disease,” Congressman Paulsen said. “This legislation is essential to broaden our understanding of the disease and how it acts and reacts within the body, thus paving a way for a cure for the more than 200,000 Americans living with pulmonary fibrosis.”

“Unfortunately, we know little about pulmonary fibrosis, a debilitating and deadly disease that takes the lives of thousands of Americans each year,” Congresswoman Baldwin said. “This legislation is critical to increasing our understanding of idiopathic pulmonary fibrosis and to finding treatment options and, potentially, a cure.  I look forward to working with my colleagues in both chambers and on both sides of the aisle on this important bill.”

“This is a disease which is more prevalent than people realize,” former Congressman Castle said. “It is always fatal and it is always a very difficult experience for families and loved ones. The support for research and leadership on prevention being shown in these bills is greatly appreciated by all of us who have been affected by this disease. I would like to thank Senator Coons and the other sponsors for these bills for focusing on this issue and hopefully providing the genesis for a cure.”

"This is an important step forward in the fight to stop PF,” said Mishka Michon, Chief Executive Officer for the Coalition for Pulmonary Fibrosis. “The patient and medical community is extremely grateful to Senators Coons and Crapo for bringing this legislation to Congress, and we hope to see as extended a list of co-sponsors as we did in the 111th Congress.”

“We are grateful for the legislative leadership of Senators Coons, Crapo, Murray, and Kirk, and Representatives Paulsen and Baldwin,” said Daniel M. Rose, M.D., President and Chief Executive Officer of the Pulmonary Fibrosis Foundation. “As a relative of three people afflicted with pulmonary fibrosis, two of whom passed away from the disease, I am proud to help and support this national effort.”

As the prevalence of PF is on the rise, up at least 150% since 2001, it is becoming increasingly important to better understand the origin, incidence, and effectiveness of therapies as they relate to pulmonary fibrosis.  The Pulmonary Fibrosis Research Enhancement Act is a crucial first step in combating this debilitating disease.

Get more information about the Senate bill here: http://bit.ly/oZU7b1

The Senate version of the bill can be downloaded at http://bit.ly/otAh9m.

The House version of the bill can be downloaded here: http://bit.ly/ovSqDa

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