Goulet Death Highlights Untreatable Disease

Idiopathic pulmonary fibrosis kills as many as breast cancer

Actor Robert Goulet was one of 40,000 people in the U.S. who will lose their lives to idiopathic pulmonary fibrosis (IPF) this year, the same number as will die from breast cancer. Yet, most people never hear of IPF until someone they love is diagnosed.

IPF is the most common form of interstitial lung disease, a broad category of lung diseases characterized by scarring and/or inflammation of the lungs. IPF has no FDA-approved treatment, no known cause and no cure. As in Goulet’s case, most patients won’t receive a potentially life saving lung transplant in time. In fact, approximately 50 percent of IPF patients who are on a lung transplant list will pass away before a donor lung becomes available. More than 128,000 people suffer from IPF in the United States , and prevalence and incidence of the deadly disease has increased more than 150 percent in just five years.

“Pulmonary fibrosis remains an extremely frustrating disease for researchers,” said Kevin K. Brown, MD, vice chair of medicine at National Jewish Medical and Research Center and director of the Interstitial Lung Disease Program. Dr. Brown co-authored a recent paper on the rising mortality from IPF. “The devastation it causes to patients and their families only amplifies the urgency we feel as we study the disease. While we have made some progress over the last decade, it is not nearly enough.”

National Jewish has one of the largest interstitial lung disease programs in the country.  Physicians, scientists and staff at National Jewish conduct comprehensive evaluation and treatment of patients with lung fibrosis while researching new ways to treat and prevent these disabling diseases. The National Institutes of Health has designated and funded National Jewish as a Specialized Center of Research for ILD.

"Our sympathies go out to the Goulet family. We know first hand the tragedy of IPF," said Mark Shreve, chief executive officer of the Coalition for Pulmonary Fibrosis (CPF). “It is devastating news to IPF patients and their families that viable treatments for IPF still do not exist. We desperately need to increase awareness of IPF and fund research that will lead to new treatments, and ultimately a cure.”