New federal funds to create first national patient registry for pulmonary fibrosis

During the 8th annual National Pulmonary Fibrosis (PF) Awareness Week, Sept. 11 to 18, the Coalition for Pulmonary Fibrosis (CPF) met with over 45 legislators, both Representatives and Senators,  and as of this date there are 139 House co-sponsors for the Pulmonary Fibrosis Research Enhancement Act (PFREA) to fund research on this deadly disease.

Pulmonary Fibrosis patients, their families and supporters targeted this year's visits to Senatorial offices in order to begin building a cohort of co-sponsors for the newly established Senate PFREA, S. 3703. The organization's members have been calling, writing and emailing their Congressional members to encourage their sponsorship of the first-ever bill allocating funds to help find answers to this fatal disease.

Initially working closely with Congressmen Brian Baird (D-WA) and Mike Castle (R-DE) on H.R. 1079, and recently with Senators Patty Murray and Mike Crapo on the Senate version.  This historic, bi-partisan legislation would authorize $16 million in new federal funding to create the first national patient registry for PF, and provide much needed support for research into the deadly lung disease.  

One of the family member advocates who went to Washington was Rose Barton of Mount Juliet, Tenn., who lost her husband, an Army officer, to the disease. "We were a powerful force on the Hill as we told our personal stories. At every office visit, our group was received extremely well and we had the perfect opportunity to educate our legislators and plead our case for our two bills. We answered questions, provided education, and left a lasting impact by sharing the depth of the personal tragedy that this disease has brought to each of our lives," Barton said.

"Every year an outstanding cohort of patients and caregivers donate their time and energy to bringing the urgent message about PF to Congress, and every year we are received warmly by a large number of legislative offices.  These visits put a face and a family story to this terrible disease and bring us closer to Congressional action on behalf of the tens of thousands of sufferers,"   said Mishka Michon, CPF Chief Executive Officer.  

The progression from a bill of recognition of the disease, H. Con Res 182, which was passed in 2007 to a bill establishing funding for PF research, is indicative of increased responsiveness on the part of Congress. Over the past eight years, the CPF and its advocates have met with hundreds of members of Congress.

This year, 2010, has been proclaimed international "Year of the Lung" by the American Thoracic Society (ATS) and respiratory societies around the globe.  The CPF is partnering with this alliance in a concerted effort to bring attention to lung issues. National PF Week continued that effort.  

Increasing awareness of Pulmonary Fibrosis does not end with Awareness Week. Patients and supporters are encouraged to make Americans aware of this disease. For further information, visit the CPF at www.coalitionforpf.org, call 888-222-8541 or email [email protected].