Success of 2007 National IPF Awareness Week on Capitol Hill Drives Efforts to Increase Research, Awareness for Deadly Lung Disease
SAN JOSE, Calif., Oct. 4 /PRNewswire-USNewswire/ -- The Coalition for Pulmonary Fibrosis (CPF) today announced that the success of its fifth annual National IPF Awareness Week, which included meetings with nearly 60 members of Congress about the critical need to fund new research into idiopathic pulmonary fibrosis (IPF), a progressive and ultimately fatal lung disease affecting more than 128,000 Americans. Currently, there is no FDA-approved treatment, no known cause and no cure for IPF.
Nearly 50 CPF advocates, many of whom were patients and family members, took part in meetings on Capitol Hill the week of Sept. 24 and urged Congress to increase federal funding for IPF research in the Fiscal Year 2009 budget cycle. The group urged passage of legislation important to the IPF community, including a resolution specifically calling for IPF research and ending the Medicare Disability waiting period for patients with life-threatening diseases.
National IPF Awareness Week Highlights
The highlights of the week included a Congressional reception hosted by Reps. Brian Baird (D-WA), Nathan Deal (R-GA) and Mike Castle (R-DE), all of whom have been personally touched by IPF, which included an award presentation to the late Congressman Charlie Norwood's widow for his efforts in IPF. The CPF also hosted a meeting with the National Institutes of Health (NIH) and sponsored a patient education day in partnership with INOVA Fairfax Hospital, featuring speakers from INOVA, the University of Pennsylvania Medical Center, the University of Michigan, New York-Presbyterian Hospital/ Weill Cornell Medical Center and Johns Hopkins Medical Center. The CPF also ran an aggressive print and online advertising campaign before and during IPF Week aimed at Members of Congress in support of its advocacy efforts.
"Even as prevalence of IPF continues to climb - more than 150 percent increase since 2001- federal funding for much needed research remains unacceptably low," said Mark Shreve, chief executive officer of the CPF. "Researchers have every reason to expect that as the U.S. population ages, and more is known about IPF, that prevalence will continue rising. We're incredibly grateful to Congressmen Castle and Baird for their willingness to endorse our cause, and to step up to the plate to introduce legislation to help fuel new research into IPF."
Members of Congress Affected by IPF
In an editorial published in the Sept. 26th edition of The Hill newspaper, Rep. Castle wrote: "IPF is an ultimately debilitating and fatal disease, and one that is very personal to me. Because so much about IPF is unknown, it is my great hope that we act quickly to accelerate research funding at the National Institutes of Health, and that we work to identify the cause and progression of the disease through a registry system, so that new and better approaches to treat and cure IPF will be found."
IPF claimed the life of Rep. Baird's father, and Rep. Castle's brother and sister. Rep. Deal lost his friend and colleague, Rep. Charlie Norwood, earlier this year, to complications from IPF. Rep. Norwood's widow, Gloria Norwood, accepted the CPF Advocate of the Year award in her husband's name for his efforts to raise awareness of the disease during the IPF reception. The CPF also established the Charles G. Norwood Memorial Research Fund for IPF research.
Advocates Ask for Support of Key IPF Bills
The CPF Advocates asked Members of Congress for support of specific legislation that impacts IPF patients and their families. House Concurrent Resolution 182 (H. Con. Res. 182), introduced by Rep. Nathan Deal (R-GA), is currently seeking co-sponsors. To date, 16 Members of the House have signed on to the resolution. The Senate resolution, Senate Concurrent Resolution 42 (S. Con. Res. 42), introduced by Norm Coleman (R-MN) and co-sponsored by Sen. Richard Durbin (D-IL) passed in July. Rep. Gene Green (D-TX) introduced the "Ending the Medicare Disability Waiting Period Act of 2007" in the House and Sen. Jeff Bingaman (D-NM) introduced the Senate version. The median survival rate for IPF patients is just 3 years, yet there is a 2-year waiting period for people who are under 65 and suffering from IPF to qualify for Medicare. Given the rapid health decline of IPF patients, many will never survive to see the Medicare benefit under existing guidelines.
Appropriations Request Slated for IPF in 2009 Federal Budget
As a result of the National IPF Awareness Week effort, the CPF is now working with approximately 20 Members of Congress from both parties to seek Congressional appropriation in the 2009 Federal Budget for increased funding for the NIH for IPF research. It is estimated that the federal government spends just $18 to 20 million each year on IPF research, despite the fact that 40,000 people die each year of IPF, which is roughly equal to the number of people who die each year from breast cancer. IPF funding lags far behind other better-known and less prevalent lung diseases.
CPF Asks NIH for Increased Attention to IPF
The CPF and advocates met with leaders from the NIH to be updated on current efforts in IPF. Drs. James Kiley and Herbert Reynolds presented the NIH's current IPF portfolio to patients and discussed the future of research into the disease, including clinical trails underway through the NIH-sponsored IPF Research Network (IPFNet).
How You Can Help
The success of the CPF's National IPF Awareness Week is due to the commitment and passion of the patients, families, and medical professionals who have joined our cause. To learn how you can help the CPF in its efforts, please call (888)222-8541, or visit us on the Web at http://www.coalitionforpf.org.
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 14,000 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 http://www.coalitionforpf.org or call (888) 222-8541.
|SOURCE Coalition for Pulmonary Fibrosis|
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