H.R. 1079 would 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.
Detailed Summary
Pulmonary Fibrosis Research Enhancement Act - Amends the Public Health Service Act to require the Secretary of Health and Human Services, acting through the Director of the Centers for Disease Control and Prevention (CDC), to: (1) develop a system to collect data on pulmonary fibrosis and other interstitial lung diseases; (2) establish the National PF Registry; and (3) establish the National Pulmonary Fibrosis Advisory Board.
Allows the Secretary, acting through the Director of the CDC, to provide for the collection, analysis, and reporting of data on pulmonary fibrosis and other interstitial lung diseases that can be confused with, misdiagnosed as, and progress to pulmonary fibrosis.
Requires the Secretary, in developing the Registry, to: (1) expand and coordinate existing data and surveillance systems, surveys, registries, and other federal public health and environmental infrastructure; and (2) provide for research access to pulmonary fibrosis data.
Directs the Secretary to ensure that epidemiological and other types of information are made available to the National Institutes of Health (NIH) and the Department of Veterans Affairs (VA).
Requires the Director of the National Heart, Lung, and Blood Institute to expand, intensify, and coordinate Institute pulmonary fibrosis research activities.
Requires the Director of CDC to prepare the National Pulmonary Fibrosis Action Plan.
Requires the Secretary to: (1) convene a summit of individuals with expertise in research and care of pulmonary fibrosis to provide a detailed overview of NIH research activities and discuss potential collaborations between NIH and other federal health agencies; and (2) make information about NIH activities relating to pulmonary fibrosis publicly available.
Status of the Legislation
Latest Major Action: 2/13/2009: Referred to House committee. Status: Referred to the House Committee on Energy and Commerce.
Points in Favor
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Points Against
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Visitor Comments
Gina Saikin
February 22, 2009, 11:00pm (report abuse)As one who suffers from a form of PF (NSIP seems to be the consensus) - although it doesn't have the dire prognosis of IPF, it DOES have a similar one - 40-60% survival in 5-7 years (depends on which report you read). Research MUST be done, not only in IPF but on other interstitial lung diseases, of which IPF is just one. This bill must be passed.
Thomas Skau
February 24, 2009, 9:52pm (report abuse)I was Diagnosed with IPF with an open lung biopsy in May 2008 and have been living with IPF on oxygen since that time. There is no cure and no one seems to know about this deadly disease. I'm for this "Bill".
Sue Bauer
July 17, 2009, 12:03pm (report abuse)It is urgent that this bol is passed. There are too many cases of IPF that have been misdiagnosed and even so, there is no cure except for expensive transplantation. For far too many the cost is prohibitive even if the organs were available. My husband's IPF is thought to be genetic and these genetically linked cases are on the rise. This disease is not going away!!
Clarinda Perez
November 16, 2009, 5:53pm (report abuse)My grandmother passed away from this disease, and I agree and support this bill...we need more awareness!!