The following Letter to the Editor appeared in the February 14, 2007 edition of The Hill, a Washington DC-based newspaper for and about the United States Congress

By Teresa Geiger, CPF Vice President, Patient Outreach & Advocacy

The Coalition for Pulmonary Fibrosis (CPF) is deeply grateful for the efforts of Congressman Charlie Norwood (R-Ga.), who passed away on February 13, 2007, to educate and inform Congress about the deadly disease Idiopathic Pulmonary Fibrosis (IPF). The congressman introduced the first legislation recognizing the disease in 2005.

Our condolences go to the Norwood family and his congressional staffers including James Paluskiewicz, John Stone and Thomas Worthy.

Congressman Norwood delivered on his promise to thousands of Americans dying from this same deadly lung disease that caused him to need a lung transplant. He promised the patients he’d help bring much-needed attention to IPF, and he did that.

Efforts by the CPF and Congressman Norwood resulted in increased attention to the disease as well as congressional support through simple resolutions.

With the incidence and prevalence of IPF on the rise, with a 150 percent increase in just five years and 128,000 people affected, these dying patients desperately still need support. About 40,000 people will die from IPF this year alone.

Lung transplantation is currently the only life-saving treatment option IPF patients have. With a median survival of just three years, most patients don’t live long enough to get one. There is no FDA-approved treatment, no known cause and no cure for IPF.

Congressman Norwood introduced H.R. 178, the first bill in Congress to recognize IPF and the extreme need for awareness, education and research funding. The resolution easily passed the House in the fall of 2005 with Norwood’s help with a 401-0 vote. He also defended the rights of more than a million people who depend on supplemental oxygen to live by stepping up and pushing back on legislation that could place unnecessary burdens on them.

The Senate version of the IPF bill, S.R. 236, passed, as well, in 2006. Due to a difference in the language of the two bills, they will be re-introduced into the 110th Congress. Congressman Norwood intended to re-introduce the bill in the House. The bill is now in need of a member who will step in as sponsor. Sen. Norm Coleman (R-Minn.) is expected to reintroduce the Senate version soon.

For the last four years, Congressman Norwood met with several delegations of IPF patients, and advocates each year during National IPF Awareness Week on Capitol Hill, and provided hope and support through his own struggle with the disease.

This year, National IPF Awareness Week will be held September 22-29 and the CPF plans to pay tribute to Congressman Norwood.

The CPF and its membership are grateful for the dedication Congressman Norwood had to the cause and for his willingness to discuss his condition publicly and raise awareness of this dreaded disease. He has been such a source of inspiration and support for patients and families around the country. We hope our continued work on Capitol Hill will honor his legacy.