A patient advocacy group pushing to boost awareness of idiopathic pulmonary fibrosis (IPF), a little-known disease that affects about 83,000 people in the United States, raised thousands for its cause in late September, more than double its original goal.
The Coalition for Pulmonary Fibrosis, a Colorado-based awareness group, says it raised more than $100,000 during its second annual IPF Awareness Week from September 26 to October 1. The money was collected from the group's "B.I.G." (Breathing is Glorious) 5k race/walk in Ann Arbor, Michigan, an event that marked the beginning of the observance.
"We more than doubled our goal of raising $50,000 during awareness week," said Mark Shreve, chief operating officer of the Coalition for Pulmonary Fibrosis. "The B.I.G. race represents the largest fundraising event in the United States dedicated to helping the IPF community. We're incredibly grateful to the 300-plus race participants, those who contributed, and of course, the many volunteers who helped make it such a success."
Origins of the Disease
IPF is a disease marked by progressive scarring of the lungs that gradually interferes with a person's ability to breathe, and thus obtain plentiful oxygen. IPF is one of about 200 diseases that fall into a class known as interstitial lung diseases, in which lung scarring is found. Idiopathic pulmonary fibrosis has no known cause. But in some cases, causes include exposure to inhaled inorganic dusts (asbestos fibers) or organic dusts (molds and fungi), chemotherapy or radiation therapy, lung infection, or connective tissue disease like scleroderma or rheumatoid arthritis.1
In some instances, IPF can occur secondarily to pulmonary hypertension, a disease that occurs when the blood pressure in the pulmonary artery rises to dangerous levels.2
Taking Their Case to the Capital
The coalition also applauded advocacy efforts on Capitol Hill during that week. IPF patients and representatives from the coalition met with more than 60 members of Congress to discuss the importance of IPF research funding and the need to advance IPF-based legislation.
The coalition's representatives also met with Rep. Charles Norwood (R-GA), who just recently divulged that he was diagnosed with IPF. Norwood underwent lung transplant surgery in early October, and was released from the hospital several weeks later. "The Lord has truly blessed us with your friendship, with a superior medical team, and now with a continued strong recovery," he said, in a statement.
"Congressmen Norwood was extremely generous with his time and very supportive of our efforts to raise awareness of IPF and to advocate for increased federal funding for research to find a cure," Shreve said. "Our membership knows firsthand how difficult the fight against IPF can be, especially in such a public role, and we truly appreciate his willingness to share his personal story and aid our efforts on Capitol Hill."
Pending Legislation
Before his surgery, Norwood drafted a resolution calling for efforts to boost IPF awareness across the country. The coalition also received several pledges from members of Congress to support legislation aimed at its cause. One of those is a bill that would end the waiting period for disabled people to receive Medicare benefits. (H.R. 104, S. 2566).
"The median survival rate for IPF patients is less than 3 years, yet IPF patients under 65 must wait 2 years to qualify for Medicare coverage, and patients may not survive that long due to the relentless progression of the disease," said Shreve.
1. Coalition for Pulmonary Fibrosis. What is IPF? Available at: http://www.coalitionforpf.org/Patients/whatisipf.asp. Accessed November 11, 2004.
2. Ghofrani HA, Wiedemann R, Rose F et al. Sildenafil for treatment of lung fibrosis and pulmonary hypertension: a randomized controlled trial. Lancet 2002 Sep 21;360(9337):895-900.
John Martin is a long-time health journalist and an editor for Priority Healthcare. His credits include coverage of health news for the website of Fox Television's The Health Network, and articles for the New York Post and other consumer and trade publications.
