[Congressional Record Volume 156, Number 117 (Wednesday, August 4, 2010)]
[Senate]
[Pages S6738-S6739]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mrs. MURRAY (for herself and Mr. Crapo):
  S. 3703. A bill to expand the research, prevention, and awareness 
activities of the Centers for Disease Control and Prevention and the 
National Institutes of Health with respect to pulmonary fibrosis, and 
for other purposes; to the Committee on Health, Education, Labor, and 
Pensions.
  Mrs. MURRAY. Mr. President, I am pleased to introduce the Pulmonary 
Fibrosis Research Enhancement Act. Even though pulmonary fibrosis, or 
PF, kills almost as many people as breast cancer every year, it has not 
received the attention it deserves.
  Imagine being told by a doctor that you have a life-threatening 
disease with no known cure, no consistent standard of care, and no 
reliable prognosis. Though environmental factors, including 
occupational exposure to pollutants, are believed to play a role in its 
onset, PF has no strong demographic profile. In most cases, the doctor 
can't even tell you what has caused you to get sick. That is exactly 
the situation faced by the 48,000 people who are diagnosed with PF 
every year in the United States.
  Pulmonary fibrosis attacks the lungs, causing them to stiffen, 
thicken, and scar. As the disease progresses, it becomes harder and 
harder for oxygen to enter the bloodstream to feed the brain and other 
vital organs. Currently, the median survival rate for a person with PF 
is only around three years, and the disease kills roughly 40,000 people 
every year in the United States. That translates into someone with PF 
dying every 13 minutes.
  Perhaps the core obstacle in the fight against PF is how shockingly 
little we know about the disease. Because the research on PF is still 
in its infancy and awareness of PF is less than it needs to be, more 
than half of the cases are initially misdiagnosed. The Pulmonary 
Fibrosis Research Enhancement Act will start shedding light on PF so 
that researchers and doctors can start to figure out how to treat it 
effectively. This bill will also make sure health care professionals 
have the information they need to make accurate diagnoses of their 
patients, catching PF in the early stages and allowing for earlier 
treatment.
  The Pulmonary Fibrosis Research Enhancement Act will do two major 
things to bolster efforts against this disease.
  First, the act will establish the National Pulmonary Fibrosis 
Advisory Board. The Advisory Board is charged with consulting with and 
advising the Director of the Centers for Disease Control to create a 
National Pulmonary Fibrosis Action Plan and with presenting the plan to 
Congress within one year of the bill's passage. Members

[[Page S6739]]

of this Advisory Board will come from government agencies, volunteer 
health organizations, patients and patient advocates, and leading 
scientists.
  Second, the act will create the first National PF Registry to gather 
the data about PF prevalence, risk factors, and development that will 
help scientists make progress against this disease. This registry will 
allow researchers to see where those diagnosed with PF are located, 
which can help determine if there clusters of cases and shed light on 
any environmental factors. This registry will also be made available to 
all researchers, including the National Institutes of Health and the 
Department of Veterans Affairs, and will allow researchers to build on 
each others' work to develop treatments in a more streamlined and well-
informed manner.
  PF attacks Americans in all walks of life it knows no boundaries and 
can affect anyone. The prevalence of PF has increased more than 150 
percent since 2001, and is expected to continue rising as the 
population of the United States ages. With that in mind, it is clearly 
time for Congress to take this first, long overdue step in the battle 
against PF. I urge my colleagues to support this bill so we can begin 
to bring relief to the hundreds of thousands of Americans who suffer 
from PF.

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