In Celebration of Pulmonary Fibrosis Month – And the Hope of a Better Future

(September 20, 2013)

Pulmonary fibrosis is a disease affecting 128,000 Americans that causes irreversible scarring of the lung tissue, making it nearly impossible for oxygen to pass through the walls of the air sac into the bloodstream. Most cases of pulmonary fibrosis have no known cause and currently, there are no FDA approved treatments or cure available.  The disease is often fatal, with most succumbing to the disease three to five years after diagnosis.  There is still much to be discovered on how to prevent and treat this disease and there is no better time to increase public awareness of the disease than during Pulmonary Fibrosis Month. 

The American Lung Association has been a longtime funder of research dedicated to finding a potential cause and/or effective treatment for pulmonary fibrosis.  We also provide support and information to patients, and their caregivers, managing the disease through our in-person Better Breathers Clubs and our interactive online Lung Connection.  Both of these programs offer the opportunity to learn ways to better coping with pulmonary fibrosis while getting the support of others who share in the same struggles. 

Most recently, the American Lung Association was instrumental in championing the selection of pulmonary fibrosis as one of 16 diseases chosen to be a part of the Food and Drug Administration new Patient Focused Drug Development Initiative.  According to the FDA, the American Lung Association advocates submitted 41 percent of all comments received – including 663 in support of pulmonary fibrosis.  This initiative is being conducted to obtain patients’ input on specific disease areas, including their perspectives on their condition, its impact on daily life and available therapies.

The FDA has stated that it will conduct a public meeting allowing stakeholders, including patients, to discuss the impacts of the disease on daily life and how patients should be treated, with the goal leading to improved care and treatments for those who suffer from pulmonary fibrosis. This is a wonderful opportunity to engage pulmonary fibrosis patients and caregivers to empower them and provide a forum to share their stories and engage in meaningful patient advocacy. 

FDA has not released the details of the public meeting but it is expected to occur sometime in 2014 or 2015.  The American Lung Association will launch a campaign to mobilize pulmonary fibrosis patients, their families and patient advocates nationwide to ensure FDA hears their voices and perspectives once details become known.

For more information on the American Lung Association’s resources for pulmonary fibrosis, please review our website