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| CPF Patient Advocates Meet With 50 Congressional Offices During IPF Week, Urge Support of Landmark Pulmonary Fibrosis Bill |
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| Efforts Double the Number of Co-Sponsors of Pulmonary Fibrosis Research Enhancement Act of 2008 |
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As part of National Pulmonary Fibrosis Awareness Week Sept. 7-13, 2008, Coalition for Pulmonary Fibrosis (CPF) patient advocates asked Members of Congress for their support of a landmark bill that could impact the lives of thousands of other Americans. Some of the advocates, including former Utah Governor Olene Walker, suffer from an untreatable and terminal lung disease called idiopathic pulmonary fibrosis (IPF), also known as pulmonary fibrosis (PF), a disease that is rapidly gaining attention on and off Capitol Hill.
Patient Advocates with the CPF met with more than 50 Members of Congress last week for the 6th annual National PF Awareness Week to generate support for the Pulmonary Fibrosis Research Enhancement Act (H.R. 6567). The group of more than 25 advocates made up of patients, medical professionals, family members, and CPF partners met with Members of Congress and their staff and asked for their co-sponsorship of the PF Act. As a result of their efforts and the efforts of patients nationwide contacting their Members of Congress, the number of co-sponsors doubled during IPF Week.
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"PF patients and families have an incredible impact on these visits, allowing Members to learn first-hand of the terrible suffering and impact this disease has on its victims," said Mishka Michon, chief executive officer of the CPF. "We are proud to represent so many patients who continually look to us for help. We are excited to have had so many face-to-face meetings with Members, and we're dedicated to getting the Act passed in the 111th Congress. We're even more committed to our advocacy work and are energized by the feedback we received during the Week."
"Our efforts over the last six years have had an impact on the forward momentum of efforts centered on PF. (On Capital Hill) We're no longer simply discussing the disease to educate lawmakers, we are now leading a national campaign for historic change with regard to PF research," said Michon.
H.R. 6567 will provide much needed help for more than 128,000 patients who suffer from the lung disease that claims 40,000 lives each year, the same as breast cancer. The bill will create a national patient registry, an instrumental tool for improving patient care and advancing medical research. The bill was introduced in July by Rep. Brian Baird (D-WA) and Rep. Mike Castle (R-DE), Members of Congress who have each lost family members to PF.
"I was so pleased to meet with my colleagues on Capitol Hill about this important bill. It was a rewarding experience because of the fact we were able to educate so many Members of Congress on the disease and the urgent need for their support of H.R. 6567," said former Governor Walker.
Advocates also asked Congress to support H.R. 154, the Ending the Medicare Disability Waiting Period Act sponsored by Rep. Gene Green (D-TX) and Sen. Jeff Bingaman (D-NM). Many patients who suffer from PF are under 65 and must apply for Social Security disability. Once approved, patients are required to wait a mandatory 24 months before receiving any benefits from Medicare. For the majority of patients who fall into this category, death comes before benefits are approved, since the average life expectancy from PF is just 2.8 years.
Patients and family members nationwide are encouraged to reach out to their Members of Congress to support H.R. 6567 and H.R. 154. To learn how you can join our national campaign to pass this legislation, please visit our Web page at www.coalitionforpf.org/cpf_advocacy, or contact Teresa Barnes at 888-222-8541.
Make your voice heard by joining our campaign today! Power is in numbers, and every patient, caregiver and friend who writes, calls or meets with their Representative could tip the scales in favor of research funding for IPF and help save thousands of lives.
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