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WTC Police Officer Son Meeting With President May Finally Give Voice to Dying Pulmonary Fibrosis Patients

Posted on: Wednesday, 31 January 2007, 18:00 CST

Largely Unknown Disease Has No Treatments, No Cure, Life Expectancy of About

Three Years

SAN JOSE, Calif., Jan. 31 -- When Ceaser Borja meets today with President Bush, thousands of patients who suffer from the same lung disease that claimed his father's life will be holding their breath. They are all hoping his visit will help drive much needed attention to Idiopathic Pulmonary Fibrosis (IPF), a progressive and ultimately fatal lung disease.

Borja is the son of former New York City Police Officer and 9/11 first responder Cesar A. Borja, who died last week from IPF, according to reports.

Any awareness that is created for IPF by Mr. Borja's visit with the President is a huge step for the IPF community, according to patients like Joe Wishnoff, 27, of Chicago, Ill.

"I feel people have no idea about this deadly disease. We have been suffering in silence from this disease that has largely been ignored," said Wishnoff who was diagnosed in 2005. "I hope Mr. Borja is able to convey the graveness of this illness that affects so many, including some 9/11 responders, and the critical need for increased research funding to find lifesaving treatments."

A lung transplant provides the only long-term hope for survival for patients like Wishnoff, a young, successful entrepreneur and a college student in Chicago. The median survival rate for patients diagnosed with IPF is just over three years.

"I want to live long enough to finish a Master's degree, start a family and live out more of my dreams. With this disease, I must face the grim reality that I may never realize many of them," Wishnoff said. Lung transplant is currently the only treatment option for pulmonary fibrosis proven to prolong life, yet most don't live long enough to get one."

Very few Americans have heard of IPF, but the deadly lung disease affects 128,000 Americans and there are no treatments approved by the Food & Drug Administration (FDA) and no cure. Prevalence of the disease has increased an alarming 150 percent since 2001.

The Coalition for Pulmonary Fibrosis (CPF) (http://www.coalitionforpf.org/) is available to help all Americans who suffer from the disease, including those who are also 9/11 responders and workers. Until the creation of the CPF in 2001, there were no national resources or support services for IPF patients, and little focus was placed on the disease. The CPF now serves as the definitive resource for information and support for IPF patients and the healthcare professionals who treat them.

Important Facts About Idiopathic Pulmonary Fibrosis (IPF):

Definition: Idiopathic Pulmonary Fibrosis (IPF) is defined as a progressive and ultimately fatal scarring process in the lungs of unknown cause. The terms IPF and pulmonary fibrosis are used interchangeably when describing this disease.

-- The Federal government's role is critical to accelerate efforts to help researchers identify new approaches to treat and cure IPF -- There remains a huge gap in need for research and funding for IPF. While IPF is five times more common than Cystic Fibrosis (CF), for comparison purposes, CF receives about $140 Million in federal funds each year while PF receives less than $14 Million -- Fewer than 30% of Americans have heard of Pulmonary Fibrosis (IPF), but the progressive and ultimately terminal lung disease affects 128,000 Americans -- The median survival rate for IPF patients is just three years. About 48,000 people will be diagnosed this year -- This year, 40,000 people will die from IPF, the same number that is claimed by breast cancer -- IPF Prevalence is increasing -- 156% in the past five years. The need has never been greater for increased awareness, education, advocacy and research -- Everyone is at risk for this deadly disease -- Several 9/11 responders and workers have died from pulmonary fibrosis, according to published news reports. It is too early to tell if there is a link between possible exposures at the Ground Zero site and the incidence of IPF, though research is underway to that effect. Physicians like Maria Padilla, MD, are members of a team of experts at the Mount Sinai Medical Center and a consortium of other institutions, who are investigating the connections between exposures at the Ground Zero site and the incidence of pulmonary diseases, including IPF -- There is no known cause, no FDA approved treatments and no cure for IPF. Research is critical to find ways to combat this deadly disease -- Although there are clinical trials underway investigating novel treatments for the disease, there remains no effective treatment to extend life; even though there are several clinical trials, no therapy is considered a cure. New funding is needed from the government into pathogenesis and epidemiology of the disease; until researchers understand how the disease is caused, and how it progresses, a cure will not be found; the government, and the NIH in particular, play a crucial role in funding this type of research

The CPF partners with major medical associations such as the American Thoracic Society and world class medical centers to fund critical research into IPF

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 11,000 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.

CONTACT: Teresa Geiger Coalition for Pulmonary Fibrosis, 888-222-8541, ext. 702 mobile, +1-303-521-4080

Coalition for Pulmonary Fibrosis

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

Source: PRNewswire

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