DISTRICT OF COLUMBIA, Wash., Sept. 25, 2014 (GLOBE NEWSWIRE) -- Four of the eight panelist to address the FDA tomorrow at the first U.S. Food and Drug Administration (FDA) workshop on Idiopathic Pulmonary Fibrosis (IPF) are on Capitol Hill today. They are advocating for patients nationwide with the Coalition for Pulmonary Fibrosis (CPF). The four, along with other 18 other advocates, are meeting with 38 congressional offices.
Included in the group of FDA panelists are the CPF's vice president, Teresa Barnes, of Memphis, Tennessee., CPF's Daughters of Pulmonary Fibrosis program northeast regional co-leader, Heather Snyder of Harrrisburg, Pennsylvania., and CPF advocates Curt Thompson of Richland, Mississippi, and Faye MacInnis of Newark, Delaware.
Barnes, who was a founding board member for the CPF before joining the staff in 2006, has lost five members of her family to IPF. Snyder's father died of IPF when she was a child and she was diagnosed with it and received a lung transplant three years ago. Thompson lost his wife as well as her twin sister to IPF and MacInnis recently lost her husband to the deadly disease.
"We are pleased that so many of our advocates were asked to participate actively in the FDA's IPF Workshop," said Mishka Michon. "They each have much to share that can better help the FDA to understand what patients and caregivers face with this devastating illness."
The FDA chose panelists with various perspectives and experiences to provide insight to disease symptoms, quality of life, and medications. Although there is no FDA approved therapy yet for IPF, the FDA wants to hear not only about prescription drugs which patients may have taken off label but also alternative or holistic treatments and over the counter treatments. The FDA wants to hear about the symptoms and experiences that are most important to patients as well as their opinions on current approaches to treating IPF.
Because of the debilitating nature of the disease and its high mortality rate, it is often difficult for patients to physically travel to meetings or to provide their perspectives as much as in some other disease areas. That may explain why several of the eight panelists chosen by FDA are caregivers and family members.
Pulmonary Fibrosis (PF) is a lung disease characterized by progressive and irreversible scarring that renders the lungs unable to exchange blood oxygen. Patients die in an average 2.8 years and the disease claims as many lives as breast cancer. When the cause of the disease is unknown, it is referred to as idiopathic.
The Coalition for Pulmonary Fibrosis (CPF), a non-profit group that has organized efforts around PF Awareness every September for 13 years, worked with FDA to make their workshop on September 26th more accessible to IPF patients. Since most IPF patients require supplemental oxygen and have difficulty walking due to their reduced lung function, the FDA will be increasing the number of shuttles it normally operates from the FDA parking area to the FDA meeting location at the request of the CPF. The CPF is sponsoring the availability of supplemental oxygen at the FDA meeting so patients can more easily attend the four-hour event. Most IPF patients require higher oxygen levels, and therefore can use significant amounts of oxygen in a short time. Such a meeting would be impossible for many IPF patients to attend without the option of oxygen refills.
Recently, the U.S. Food and Drug Administration (FDA) granted breakthrough therapy designation for two investigational treatments for the disease: Boehringer Ingelheim's nintedanib and InterMune's pirfenidone. If approved, they will be the first therapies available to patients in the U.S.
National Pulmonary Fibrosis Awareness Month in September
The CPF is sponsoring special campaigns during the 13th annual National Pulmonary Fibrosis Awareness Month – including an effort by its member patients, their family members, and advocates, who are canvassing the nation to increase awareness of the disease with efforts ranging from mayoral and gubernatorial proclamations to meetings in districts and on Capitol Hill with congressional members and their offices. Many CPF members will be holding fundraising and awareness events on a local level, as well. The CPF and the American Thoracic Society (ATS) will co-host a disease awareness week September 21-27 during which they will co-host an IPF patient education event with Johns Hopkins Medical Center at its Bayview Campus, on September 27th. The event will be webcast, as well. To register for the in-person meeting at Johns Hopkins or to join the webinar, email dperez@thoracic.org. The CPF will bring patients and advocates to Capitol Hill on September 25th and will take a group of its members to the White House on the morning of September 26th before attending the FDA IPF Workshop.
About Pulmonary Fibrosis (PF)
Pulmonary Fibrosis (PF) 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 200,000 Americans suffer from PF, and there is currently no known cause or cure. An estimated 48,000 new cases are diagnosed each year. PF is difficult to diagnose and an estimated two-thirds of patients die within five years of diagnosis. Sometimes PF can be linked to a particular cause, such as certain environmental exposures, chemotherapy or radiation therapy, residual infection, or autoimmune diseases such as scleroderma or rheumatoid arthritis. However, in many instances, no known cause can be established. When this is the case, it is called idiopathic pulmonary fibrosis (IPF).
About the CPF
The CPF is a 501C(3) nonprofit organization, founded in 2001 to accelerate research efforts leading to a cure for pulmonary fibrosis (PF), 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 PF; provides patients and families with comprehensive education materials, resources, and hope; serves as a voice for national advocacy of PF issues; and works to improve awareness of PF 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 28,000 members nationwide, the CPF is the largest nonprofit organization in the U.S. dedicated to advocating for those with PF. For more information please visit www.coalitionforpf.org or call (888) 222-8541.