Read Senator Patty Murray’s Floor Statement Introducing S. 3703, the PFREA Today!

M. President, I am pleased to introduce the Pulmonary Fibrosis Research Enhancement Act. Even though pulmonary fibrosis, or PF, kills almost as many people as breast cancer every year, it has not received the attention it deserves.

Imagine being told by a doctor that you have a life-threatening disease with no known cure, no consistent standard of care, and no reliable prognosis. Though environmental factors, including occupational exposure to pollutants, are believed to play a role in its onset, PF has no strong demographic profile. In most cases, the doctor can’t even tell you what has caused you to get sick. That is exactly the situation faced by the 48,000 people who are diagnosed with PF every year in the United States.

Pulmonary fibrosis attacks the lungs, causing them to stiffen, thicken, and scar. As the disease progresses, it becomes harder and harder for oxygen to enter the bloodstream to feed the brain and other vital organs. Currently, the median survival rate for a person with PF is only around three years, and the disease kills roughly 40,000 people every year in the United States. That translates into someone with PF dying every 13 minutes.

Perhaps the core obstacle in the fight against PF is how shockingly little we know about the disease. Because the research on PF is still in its infancy and awareness of PF is less than it needs to be, more than half of the cases are initially misdiagnosed. The Pulmonary Fibrosis Research Enhancement Act will start shedding light on PF so that researchers and doctors can start to figure out how to treat it effectively. This bill will also make sure health care professionals have the information they need to make accurate diagnoses of their patients, catching PF in the early stages and allowing for earlier treatment.

The Pulmonary Fibrosis Research Enhancement Act will do two major things to bolster efforts against this disease.

First, the act will establish the National Pulmonary Fibrosis Advisory Board. The Advisory Board is charged with consulting with and advising the Director of the Centers for Disease Control to create a National Pulmonary Fibrosis Action Plan and with presenting the plan to Congress within one year of the bill’s passage. Members of this Advisory Board will come from government agencies, volunteer health organizations, patients and patient advocates, and leading scientists.

Second, the act will create the first National PF Registry to gather the data about PF prevalence, risk factors, and development that will help scientists make progress against this disease. This registry will allow researchers to see where those diagnosed with PF are located, which can help determine if there clusters of cases and shed light on any environmental factors. This registry will also be made available to all researchers, including the National Institutes of Health and the Department of Veterans Affairs, and will allow researchers to build on each others’ work to develop treatments in a more streamlined and well-informed manner.

PF attacks Americans in all walks of life—it knows no boundaries and can affect anyone. The prevalence of PF has increased more than 150 percent since 2001, and is expected to continue rising as the population of the United States ages. With that in mind, it is clearly time for Congress to take this first, long overdue step in the battle against PF. I urge my colleagues to support this bill so we can begin to bring relief to the hundreds of thousands of Americans who suffer from PF.