Dying Man Joins Advocates in Meetings With 70 Congressional Offices

Sep 28, 2011, 13:00 ET from Coalition for Pulmonary Fibrosis

Meetings Part of National Pulmonary Fibrosis Awareness Week

CULVER CITY, Calif., Sept. 28, 2011 /PRNewswire-USNewswire/ -- At 6'1", solid and handsome, Douglas Nance looks more like a football star than a man dying from Pulmonary Fibrosis (PF).  Only the oxygen tank he carries and the plastic tubing in his nose gives him away.  

Nance, 56, and his wife, Martina, walked the halls of Congress just days ago asking for help for the lung disease that is scarring his lungs, and stealing his breath but not breaking his spirit.

The two were part of a 35-member team of advocates on Capitol Hill with the Coalition for Pulmonary Fibrosis (CPF) asking members of Congress to help the more than 128,000 Americans suffering from the little known lung disease called Pulmonary Fibrosis (PF).  They met with 70 members of the U.S. House of Representatives and the U.S. Senate asking for co-sponsorship of the Pulmonary Fibrosis Research Enhancement Act (H.R. 2505/S.1350) as part of their efforts to draw attention to the killer disease during National Pulmonary Fibrosis Awareness Week.  PF claims as many lives each year as breast cancer but has no FDA approved treatments and no cure and has virtually no survivors.  

In a meeting with their member of Congress, Rep. Eleanor Holmes Norton's (D-DC) staff, they  conveyed not only Nance's' story, but explained that their friend and fellow advocate, Doris Lowenthal, 45, who met with the staff during PF Week 2010, had lost her fight to PF just weeks earlier.  

"We told her staffer the main reason we were in her office was to stand for Doris and others who are suffering from PF. We also talked about the effect of PF on our quality of life and the activities that Douglas is no longer able to do," said Martina Coates-Nance.

Perhaps it was the compelling stories about Lowenthal and Nance or the sense of urgency they conveyed that helped Rep. Norton decide to support the legislation.  She and 25 other members of the House are now signed onto the bipartisan legislation that would create a national patient registry and provide critical data that could unlock the answers that may provide treatments and a cure.  The Senate version of the bill currently has six co-sponsors.

The bill's leader in the House, Rep. Erik Paulsen (R-MN), made a passionate plea to his colleagues on the House floor last week urging them to sign onto the legislation; to view video of Paulsen's speech, click: http://www.youtube.com/watch?v=tXxICKCjxn0&feature=channel_video_title

Rep. Paulsen and Rep. Tammy Baldwin (D-WI) as well as Senator Chris Coons (D-DE) and Senator Mark Kirk (R-IL) sent letters to fellow members asking for their support of the historic, bi-partisan legislation that would create the first national patient registry for PF and provide much needed support for research into the deadly lung disease.  

"We are inspired by the patients and advocates who show such strength and courage in standing up for the thousands and thousands of patients who couldn't be there. However much they are suffering, they have chosen to put that aside in order to give a national voice to the entire PF community," said Mishka Michon, chief executive officer of the CPF.

Another patient advocate on Capitol Hill, Lesley Steinberg from Marietta, Georgia, joined the Nances and other advocates on Capitol Hill as her mother, Charlotte Griggs, 65, lie in an Atlanta hospital on a ventilator waiting for a lung transplant.  The only known way to survive PF is via transplant but only about one percent of PF patients receive one in time.  Steinberg's mother died this morning.

To send a letter to Congress in support of the PF legislation, go to: https://secure3.convio.net/cpf/site/Advocacy?cmd=display&page=UserAction&id=145

About Pulmonary Fibrosis (PF)
Pulmonary Fibrosis is a lung disorder characterized by a progressive scarring – known as fibrosis – and deterioration of the lungs, which slowly robs its victims of their ability to breathe. There is currently no known cause or cure. Approximately one percent of patients' lives are extended through lung transplants. An estimated 48,000 new cases are diagnosed each year. PF is difficult to diagnose and an estimated two-thirds of patients die within five years of diagnosis.  Sometimes PF can be linked to a particular cause, such as certain environmental exposures, chemotherapy or radiation therapy, residual infection, or autoimmune diseases such as scleroderma or rheumatoid arthritis. However, in many instances, no known cause can be established. When this is the case, it is called idiopathic pulmonary fibrosis (IPF).

About the CPF's Campaign ACT
Since 2002, the CPF has been leading a national advocacy effort directed toward Congress, the National Institutes of Health and the Centers for Disease Control to increase research funding for PF and accelerate efforts to find a cure for this devastating lung disorder.  The CPF has also actively advocated for passage of legislation important to the PF community in the areas of Medicare and Social Security coverage.

About the CPF
The CPF is a 501(c)(3) nonprofit organization, founded in 2001 to accelerate research efforts leading to a cure for pulmonary fibrosis (PF), while educating, supporting, and advocating for the community of patients, families, and medical professionals fighting this disease. The CPF funds promising research into new approaches to treat and cure PF; provides patients and families with comprehensive education materials, resources, and hope; serves as a voice for national advocacy of PF issues; and works to improve awareness of PF in the medical community as well as the general public. The CPF's nonprofit partners include many of the most respected medical centers and healthcare organizations in the U.S. With more than 24,000 members nationwide, the CPF is the largest nonprofit organization in the U.S. dedicated to advocating for those with PF. For more information please visit www.coalitionforpf.org or call (888) 222-8541.

SOURCE Coalition for Pulmonary Fibrosis