Pulmonary Fibrosis Research Enhancement Act of 2008 Introduced in U.S. Congress

Landmark Bill Would Create National Patient Registry, Increase Public
Awareness of Deadly Lung Disease

WASHINGTON, July 23 /PRNewswire-USNewswire/ -- Not much is known about
Pulmonary Fibrosis (PF), a progressive and ultimately fatal lung disease that
claims the lives of 40,000 Americans each year and kills an estimated
two-thirds of patients within their first five years of diagnosis. As two
members of the House of Representatives who have been personally impacted by
PF, Congressmen Brian Baird (WA-03) and Mike Castle (DE-at large) today
introduced the Pulmonary Fibrosis Research Enhancement of 2008, which will
fund the creation of a national PF patient registry, and call on the National
Institutes of Health (NIH) to expand and intensify PF research efforts.

Reps. Baird and Castle have been working closely with the Coalition for
Pulmonary Fibrosis (CPF) since early 2007 to author legislation that is the
first of its kind to improve research and awareness of this deadly disease.
There is known cause, no FDA approved treatment and no cure for PF. For more
information on PF, visit www.coalitionforpf.org.

"I am pleased to have worked with my colleague and the CPF to bring about this
important legislation," said Rep. Castle. "PF is an ultimately debilitating
and fatal disease, and one that has taken people close to me. I remain
dedicated to supporting research efforts to eradicate this disease."

The Act would also mandate the creation of a National PF Action Plan, in
conjunction with the National Institutes of Health (NIH) and Centers for
Disease Control (CDC), which would focus on strategies to improve public
awareness of PF, and accelerate patient and medical education strategies. The
Action Plan would be provided to the Director of the NIH within one year of
the Act's passage.

The Act also calls for establishment of National PF Advisory Board, which
would make recommendations to the NIH and CDC concerning the structure and
management of a PF patient registry. The goal of the registry would be to
improve understanding of the cause and progression of PF, standards of care
can be improved, research can be accelerated, and new therapies can be
developed sooner.

Lastly, the Act mandates the establishment of a National Summit on PF, to
foster collaboration between Federal Agencies, researchers, patients and
advocates to identify new approaches to research and treat PF. The Summit
would be held every three years.

"Neither my dad nor I had ever heard of PF prior to the day that he was
diagnosed. That's when the doctor informed us it was a death sentence," said
Congressman Brian Baird (D-WA-03). "Every 13 minutes, some family somewhere
experiences the suffering that my father went through. We must stop that.
This legislation takes an important step in searching for the cause of, and
the cure for this dreaded disease."

Since 2002, the CPF has been leading a national advocacy effort toward the NIH
& CDC to increase research funding for PF and accelerate efforts to find a
cure for this devastating lung disorder. This has included a close
collaboration with the late Congressman Charlie Norwood, who lost his battle
with IPF in 2007. The CPF worked closely with Rep. Norwood to secure passage
of H.R. 182 in 2007, which was the first-ever Congressional recognition of the
need for increased research funding and improved public awareness of PF in the
United States. This resolution laid the groundwork for the PF Research
Enhancement Act to become a reality.

"The PF Research Enhancement Act is an important first step for the fight
against PF and it is compelling to see these strong leaders come together to
fight for a disease that knows no boundaries and can attack anyone," said
Mishka Michon, Chief Executive Officer for the CPF. "We are inspired by their
leadership in this effort. Our membership will be mobilized to contact their
Congressional representatives to urgently request their support in the effort
to find answers to Pulmonary Fibrosis. We look forward to the successful
passage of this legislation."

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,
which is the most prevalent of a classification of lung disorders known as
interstitial lung diseases (ILD's). There is currently no known cause or cure
for IPF, nor is there an FDA-approved treatment. 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 16,000 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
www.coalitionforpf.org or call (888) 222-8541.

SOURCE Coalition for Pulmonary Fibrosis

Teresa Barnes of the Coalition for Pulmonary Fibrosis, +1-303-521-4080,
tbarnes@coalitionforpf.org