CPF Patient Advocates Meet With 50 Congressional Offices During IPF Week, Urge Support of Landmark Pulmonary Fibrosis Bill
To: POLITICAL EDITORS
Contact: Teresa Barnes of CPF, +1-303-521-4080 cell, tbarnes@coalitionforpf.org
Efforts Double Co-Sponsors of Bill
SAN JOSE, Calif., Sept. 18 /PRNewswire-USNewswire/ — Coalition for Pulmonary Fibrosis patient advocates asked Members of Congress for help on a landmark bill that could save their lives and 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 gaining attention on and off Capitol Hill.
Patient Advocates with the CPF met with Members of Congress last week for the 6th annual National IPF Awareness Week with the goal of generating support for the historic bill, the Pulmonary Fibrosis Research Enhancement Act (H.R. 6567). The group of more than 25 advocates made up of patients, family members and partners of the CPF met with more than 50 Members of Congress and their staffers and asked for their co-sponsorship of the PF bill. 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.
“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 around PF. (On the 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.
A critical impetus for the introduction of H.R. 6567 is the ongoing, profound disparity of federal funding for pulmonary fibrosis versus other diseases that affect a fraction of the number of patients. Also, pulmonary fibrosis is one of the few unfunded diseases where patients have a relatively short window of survival time – as opposed to others where patients can survive for many years – and no available treatment.
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 kick in, 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.
Disparity of Federal Funding
The disparity of federal funds put towards research in pulmonary fibrosis is profound. This year, less than $18 million will be spent on a disease that affects 128,000 people compared with hundreds of millions spent on diseases that affect a small fraction of that number of patients.
Background on IPF
About Idiopathic Pulmonary Fibrosis (IPF)
IPF 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. Approximately 128,000 Americans suffer from IPF, and there is currently no known cause or cure. An estimated 48,000 new cases are diagnosed each year. IPF is difficult to diagnose and an estimated two-thirds of patients die within five years of diagnosis.
About the Coalition for Pulmonary Fibrosis
The Coalition for Pulmonary Fibrosis (CPF) is a 501(c)(3) nonprofit organization, founded in 2001 to accelerate research efforts leading to a cure for idiopathic pulmonary fibrosis (IPF), 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 pulmonary fibrosis; provides patients and families with comprehensive education materials, resources, and hope; serves as a voice for national advocacy of IPF issues; and works to improve awareness of IPF 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 17,000 members nationwide, the CPF is the largest nonprofit organization in the U.S. dedicated to advocating for those with pulmonary fibrosis. For more information please visit www.coalitionforpf.org or call (888) 222-8541.
SOURCE Coalition for Pulmonary Fibrosis
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