San Jose, Calif. (October 15, 2003) – The Coalition for Pulmonary Fibrosis (CPF) and its nonprofit partners launched the first-ever National Idiopathic Pulmonary Fibrosis (IPF) Awareness Week last week. The success of the advocacy efforts led to 16 state proclamations and more than 40 meetings on Capitol Hill with congressional leaders. The goal of the National IPF Awareness Week was to raise awareness of IPF, advocate for IPF patients and their families, and increase funding to find effective therapies for IPF, a debilitating lung disease that has no known cause and no cure.

"This is, by far, the largest advocacy effort to date on behalf of the patients and families living with IPF, and the healthcare professionals who treat them," said Mark Shreve, COO of the CPF. "The commitment on the part of sixteen governors’ offices across the country underscores how critical this effort is for the IPF community, and shows their willingness to partner to improve the quality of care for these patients, and increase funding for research to find a cure."

IPF is a progressive, and often fatal, lung disease affecting more than 83,000 Americans, and prevalence is on the rise. For those who suffer from IPF, every breath is a challenge. IPF scars the lungs and thickens the organ’s lining to the point where the tissue is no longer able to transport oxygen and the patient can no longer breathe. While not heavily publicized, about 15,000 new cases are diagnosed each year. For the thousands of Americans suffering from this disease, the need for education, awareness, resources, and improved treatments has never been greater.

The state proclamations were designed to raise awareness of IPF and to educate lawmakers , health agencies, healthcare professionals, and the general public about IPF, with a goal of improving the quality of care patients receive while advocating for improved research funding to find a cure. Proclamations were issued in the following states thanks to the efforts of CPF members, physicians and partners across the country: Alabama, Arizona, California, Colorado, Connecticut, Illinois, Iowa, Nevada, New Jersey, North Carolina, Oklahoma, Pennsylvania, Tennessee, Virginia, Wisconsin and Washington.

Taking the IPF message to Capitol Hill

In addition to the state proclamations, a team of CPF representatives took their awareness message to Capitol Hill as part of National IPF Awareness Week. The congressional meetings were aimed at raising awareness of IPF and educating leadership on a myriad of issues facing IPF patients and their families.

The CPF met with more than 40 Members of Congress over the course of two days. Meetings were conducted with congressional members from the following states: Arizona, California, Colorado, Florida, Illinois, Idaho, Indiana, Iowa, Kansas, Massachusetts, Minnesota, New York, North Carolina, Ohio, Pennsylvania, Virginia, and Wisconsin.

"This was the first time I had been to Capitol Hill and I was amazed at the welcome reception we received from the staff members that we met with. Most of them had never heard of IPF and listened intently to our stories," said Trudy Vanderbeck, an IPF patient from Vincennes, Indiana. "I was proud to be able to represent the interests of the patients suffering from this disease."

Trudy had never thought to advocate politically on her debilitating situation with IPF, and on behalf of the other 83,000 Americans living with the disease, until becoming involved with the CPF. Trudy also served as a guest speaker at the CPF’s National IPF Awareness Week kick-off event, "Living with IPF," which drew close to 100 patients and more than 140 attendees on October 5.

For a disease that is three times more common than cystic fibrosis, very little awareness exists on IPF. "Those of us involved with IPF patients on a daily basis understand this disease is already a significant problem; the need for improved treatment options for IPF patients is critical. Ultimately we hope these meetings on Capitol Hill will lead to a commitment for increased research funding to find an effective therapy for this devastating disease," commented Dr. Gregory Tino, vice chairman of the CPF and Director of Pulmonary Outpatient Practices from the University of Pennsylvania Medical Center. "We have offered to represent the IPF community in the future by providing congressional testimony during the appropriations process, as well as discussions on specific NIH funding efforts." Dr.Tino met with several congressional offices, including Senator Arlen Specter of Pennsylvania.

IPF is one of about 200 disorders known as interstitial lung diseases (ILDs). IPF has no known cause but it is the most common ILD. It is believed that potential risk factors may include asbestos exposure, cigarette smoking, exposure to wood or metal dust, exposure to consistently inhaled particles, or genetic predisposition.

There is currently no FDA-approved treatment for IPF, and about two-thirds of IPF patients die within five years. Patients are typically treated with anti-inflammatory drugs and eventually supplemental oxygen. There are several investigational treatments aimed at extending patient survival rates by attempting to reduce inflammation and scarring of the lungs. Funding emerging research to find a cure is critical.

In order to take advantage of the treatment options that are available, it’s important that physicians and patients know the symptoms of IPF so the disease is diagnosed early and accurately. Symptoms include:

• Dry, persistent cough lasting longer than 30 days
• Chronic shortness of breath, also known as dyspnea
• Crackling sound in the lungs that can only be heard through a doctor’s stethoscope