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First-Time National Poll on IPF Reveals Disorder's Prevalence Far Greater Than Its Public Awareness

Posted on: Monday, 15 August 2005, 15:00 CDT

SAN JOSE, Calif., Aug. 15 /PRNewswire/ -- The Coalition for Pulmonary Fibrosis (CPF) today released results of a first-of-its-kind national poll on idiopathic pulmonary fibrosis (IPF). According to the poll, awareness of IPF is alarmingly low compared to other less prevalent disorders, with less than a third of Americans (29 percent) knowing anything about the disorder. Forty- four percent of those familiar with IPF only know its name.

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 83,000 Americans suffer from IPF and 31,000 cases are newly diagnosed each year. There is currently no known cause, no FDA-approved treatment, and no cure for IPF.

"Public awareness is vital to the fight against IPF," said Mark Shreve, chief executive officer of the CPF. "There is an undeniable correlation between increased public awareness of rare diseases and the amount of resources that are made available to find treatments and cures."

"The CPF is the largest non-profit organization in the country dedicated to IPF," added Shreve. "Improving awareness of IPF is central to our mission, with an obvious hope that our efforts will lead to improved public understanding of IPF while fueling new research funding to find a cure. This poll provides an important benchmark that underscores how much work is needed in the IPF community to raise the disorder's public profile."

When comparing IPF to cystic fibrosis and Lou Gehrig's disease, both of which affect far fewer Americans than IPF (30,000 and 20,000, respectively), 88 percent of Americans have heard of cystic fibrosis, while 85 percent are familiar with Lou Gehrig's disease. The National Institutes of Health estimates that $48 million and $131 million will be spent researching Lou Gehrig's and cystic fibrosis respectively in 2006. Conversely, IPF is expected to benefit from roughly $18 million in research funding.

While general awareness and knowledge of IPF is low, 86 percent of respondents believe that IPF research and education should receive more public funding. In fact, eight out of 10 people in every demographic, geographic and political sub group agree that IPF research should receive more public funding.

The poll also indicates that almost two-thirds of Americans (61 percent) support eliminating Medicare's two-year waiting period for people who are permanently disabled or have life-threatening diseases and are under 65. Interestingly, middle-aged Americans are significantly more likely to support eliminating the waiting period (72 percent between those aged 45 to 54 and 67 percent of those aged 55 to 64) than those younger (50 percent of those 18 to 24) or older (53 percent of those 65 and older). Currently, only those diagnosed with Lou Gehrig's disease are permitted to forgo the Medicare waiting period.

Other survey highlights: -- Forty-six percent of Americans have sought out a second opinion from a medical professional after being diagnosed with a medical condition by their doctor. -- Forty-five percent say their main source for medical information is their doctor, 39 percent list television; the newspaper and Internet both recorded 28 percent. Women (47 percent) and seniors (50 percent) are especially likely to get their information from a doctor. The Internet is more likely an information source for younger adults (42 percent of 18 to 34 year olds), college graduates (35 percent), and the more affluent (37 percent of those with household incomes exceeding $75,000). -- Seventy-six percent of Americans report contributing money to a health- or disease-related charity or non-profit. Of those, 78 percent have contributed within the last year. Most people contribute less than $100 (78 percent). -- Generally, most Americans think Congress and the President could do a better job handling health care issues -- 79 and 68 percent respectively rate their performance as fair or poor. Methodology

The poll was conducted by Washington D.C.-based KRC Research on behalf of the Coalition for Pulmonary Fibrosis. The telephone survey was fielded July 10-12, 2005 from a national sample of 1003 adults 18 years of age and older, living in the continental United States. The margin of error for the study at the 95 percent confidence level is 3.1 percentage points. Raw polling data available upon request.

About Idiopathic Pulmonary Fibrosis

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 83,000 Americans suffer from IPF, and there is currently no known cause or cure. An estimated 31,000 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 further education, patient support and research efforts for interstitial lung disease, and specifically pulmonary fibrosis. The CPF is governed by the nation's leading pulmonologists, individuals affected by pulmonary fibrosis, medical research professionals and advocacy organizations. With more than 8,500 members nationwide, the CPF is the largest nonprofit organization in the country dedicated to helping those with pulmonary fibrosis. The CPF's nonprofit partners include the Caring Voice Coalition, the Genetic Alliance, the Mary D. Harris Memorial Foundation, the National Coalition of Autoimmune Patient Groups, the National Organization for Rare Disorders, The Pulmonary Paper, the Second Wind Lung Transplant Association, and more than 30 leading medical and research centers nationwide. For more information please visit http://www.coalitionforpf.org/ .

Coalition for Pulmonary Fibrosis

CONTACT: Marta Fraboni, +1-952-346-6348, mfraboni@webershandwick.com ,or Jill Favilla, +1-952-346-6103, jfavilla@webershandwick.com , both forCoalition for Pulmonary Fibrosis

Web site: http://www.coalitionforpf.org/

Source: PRNewswire

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