American Thoracic Society and Coalition for Pulmonary Fibrosis Partner to Raise Awareness, Help Patients, Move Legislation on Capitol Hill
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(HealthNewsDigest.com) – WASHINGTON, Sept. 12, 2011 — The American Thoracic Society (ATS) and the Coalition for Pulmonary Fibrosis (CPF) are holding two weeks of national awareness efforts (September 13-18 and Sept. 18-24 respectively) to bring attention to a lethal lung disease that claims as many American lives each year as breast cancer – yet is virtually unknown to the general public.
There is no FDA-approved treatment and no cure for Idiopathic Pulmonary Fibrosis (IPF), also known as just Pulmonary Fibrosis (PF), which causes the lungs to harden and suffocates its victims. Idiopathic means there is no known cause of the disease.
The ATS’s and CPF’s efforts will also help patients to better understand their disease and what is being done to find treatments, as well as support recently introduced Congressional legislation on the disease.
The first week of awareness efforts is dedicated to PF Week at the ATS and includes information for medical professionals, including pulmonologists ( lung doctors), and patients, families and caregivers. As part of the week’s events, a free webinar entitled New Directions for IPF Treatments: Understanding the Basis for Current Clinical Trials will be hosted by top PF researcher, Andrew Tager, MD, of Massachusetts General Hospital and Harvard Medical School, along with Teresa Barnes, chair of the ATS Public Advisory Roundtable (PAR) and vice president of patient outreach and program support for the Coalition for Pulmonary Fibrosis. In the webinar, Dr. Tager will review recent advances in understanding what drives the progression of fibrosis in IPF, and how current clinical trials are trying to translate these advances into new drugs that will be effective for this devastating disease.
The webinar will be held September 14th from 2 to 3 pm EDT. Space is limited. To reserve a space, go to: https://www1.gotomeeting.com/register/992892200. The ATS and CPF have also launched a special webpage for medical professionals as well as for patients, families and caregivers or anyone else who wants to learn more about PF at: http://patients.thoracic.org/lung-disease-week/pulmonary-fibrosis-week/index.php
“It is an exciting time in IPF research,” said Dr. Andrew Tager, whose laboratory investigates IPF at the Massachusetts General Hospital. “Lung researchers have recently identified many of the molecules that contribute to the progression of fibrosis in IPF. Pharmaceutical companies have begun to develop new drugs targeting these molecules, some of which are already entering into clinical trials.”
“The ATS is excited to be working with CPF, one of our most active Patient Advisory Roundtable members,” said Nicolas Hill, MD, president of the American Thoracic Society. “As physicians and scientists, we know how devastating IPF is. We also know that our advocacy and education efforts are strengthened ten-fold by uniting our voices with those of our patients.”
The second week is focused on National Pulmonary Fibrosis Awareness Week which will include more than 50 meetings on Capitol Hill between lawmakers and PF advocates and patients in support of newly introduced legislation, the Pulmonary Fibrosis Research Enhancement Act (H.R. 2505, S. 1350). The bill will create a national patient database and surveillance system that can create a much-needed foundation for research. Efforts also include walks and other events to raise awareness and funds for the CPF.
“We are pleased to partner with the ATS for such an important project,” said Mishka Michon, CEO of the CPF. “PF is a difficult disease that causes an enormous amount of human suffering, and we must pursue answers to the questions that will unlock treatments and a cure. That is why we’ve held National PF Awareness Week for nine years now and why we are taking patients and PF advocates to Capitol Hill in support of the PF bill.”
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 128,000 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 ATS
The mission of the ATS and its more than 15,000 members is to improve health worldwide by advancing research, clinical care and public health in respiratory disease, critical illness and sleep disorders. To accomplish that it works through the ATS Public Advisory Roundtable, a group of 13 patient-interest organizations. To learn more, please visit www.thoracic.org
About the CPF
The CPF is a 501(c)(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 24,000 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.
Web Site: http://www.thoracic.org
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