[Congressional Bills 111th Congress]
[From the U.S. Government Publishing Office]
[H.R. 1079 Introduced in House (IH)]

111th CONGRESS
  1st Session
                                H. R. 1079

  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.


_______________________________________________________________________


                    IN THE HOUSE OF REPRESENTATIVES

                           February 13, 2009

Mr. Baird (for himself, Mr. Castle, Mr. Deal of Georgia, Mr. Dicks, Mr. 
  Gerlach, Ms. Harman, Ms. Kaptur, Mr. Kirk, Mr. LaTourette, Ms. Zoe 
    Lofgren of California, Mr. Space, Mr. Tierney, and Mr. Young of 
   Florida) introduced the following bill; which was referred to the 
                    Committee on Energy and Commerce

_______________________________________________________________________

                                 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.

    Be it enacted by the Senate and House of Representatives of the 
United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

    This Act may be cited as the ``Pulmonary Fibrosis Research 
Enhancement Act''.

SEC. 2. FINDINGS.

    Congress makes the following findings:
            (1) Pulmonary fibrosis (in this section referred to as 
        ``PF'') is a relentlessly progressive, ultimately fatal disease 
        that affects the lungs, gradually robbing a person of the 
        ability to breathe.
            (2) More than 128,000 individuals may be living with PF in 
        the United States; 48,000 individuals in the United States are 
        diagnosed with PF annually; and as many as 40,000 die annually.
            (3) 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.
            (4) The median survival rate for a person with PF is 2.8 
        years.
            (5) More than 50 percent of PF cases are initially 
        misdiagnosed as other forms of respiratory illness before being 
        correctly diagnosed as PF, and more than 58 percent of patients 
        go more than a year with symptoms before being diagnosed 
        correctly.
            (6) The cause of most forms of PF is not well understood, 
        and in most cases is unknown, though there is growing evidence 
        that one cause of PF may be environmental or occupational 
        exposure to pollutants.
            (7) There is no Food and Drug Administration-approved 
        treatment or cure for PF.
            (8) Public awareness of PF remains low compared to rare 
        diseases of lesser prevalence, despite PF's increasing 
        prevalence.
            (9) There has been no federally funded national awareness 
        or educational effort to improve understanding of PF in the 
        public or medical communities, though nonprofit patient 
        education and research groups have begun to increase awareness. 
        The first Federal legislation expressing Congress' support for 
        PF research, H. Con. Res. 182, was agreed to by both Houses of 
        Congress in 2007.

SEC. 3. PULMONARY FIBROSIS REGISTRY.

    Part B of title III of the Public Health Service Act (42 U.S.C. 243 
et seq.) is amended by inserting after section 317T the following:

``SEC. 317U. PULMONARY FIBROSIS REGISTRY.

    ``(a) Establishment.--
            ``(1) In general.--Not later than 1 year after the receipt 
        of the report required by subsection (b)(3), the Secretary, 
        acting through the Director of the Centers for Disease Control 
        and Prevention and in consultation with patients, patient 
        advocates, and others with expertise in research and care of 
        pulmonary fibrosis (referred to in this section as `PF'), 
        shall--
                    ``(A) develop a system to collect data on PF and 
                other interstitial lung diseases that are related to 
                PF, including information with respect to the incidence 
                and prevalence of the disease in the United States; and
                    ``(B) establish a national registry (in this 
                section referred to as the `National PF Registry') 
                that--
                            ``(i) is used for the collection and 
                        storage of data described in subparagraph (A); 
                        and
                            ``(ii) includes a population-based registry 
                        of cases in the United States of PF and other 
                        interstitial lung diseases that are related to 
                        PF.
            ``(2) Purpose.--The purpose of the National PF Registry 
        shall be to gather available data concerning--
                    ``(A) PF, including the incidence and prevalence of 
                PF in the United States;
                    ``(B) environmental and occupational factors that 
                may be associated with the disease;
                    ``(C) age, race or ethnicity, gender, and family 
                history of individuals who are diagnosed with the 
                disease;
                    ``(D) pathogenesis of PF; and
                    ``(E) other matters as determined appropriate by 
                the Secretary.
            ``(3) Implementation.--Implementation of the National PF 
        Registry shall begin not later than 180 days after the date of 
        the enactment of this section.
    ``(b) Advisory Board.--
            ``(1) Establishment.--Not later than 90 days after the date 
        of the enactment of this section, the Secretary, acting through 
        the Director of the Centers for Disease Control and Prevention, 
        shall establish a board to be known as the National Pulmonary 
        Fibrosis Advisory Board (in this section referred to as the 
        `Advisory Board'). The Advisory Board shall be composed of at 
        least one member, to be appointed by the Secretary, acting 
        through the Director of the Centers for Disease Control and 
        Prevention, representing each of the following:
                    ``(A) The National Institutes of Health.
                    ``(B) The National Institute of Environmental 
                Health Sciences.
                    ``(C) The Department of Veterans Affairs.
                    ``(D) The Agency for Toxic Substances and Disease 
                Registry.
                    ``(E) The Centers for Disease Control and 
                Prevention.
                    ``(F) Patients with PF or their family members and 
                other individuals with an interest in developing and 
                maintaining the National PF Registry.
                    ``(G) Patient Advocates.
                    ``(H) Clinicians with expertise on PF and related 
                diseases.
                    ``(I) Epidemiologists with experience working with 
                data registries.
                    ``(J) Geneticists or experts in genetics who have 
                experience with the genetics of PF or other 
                neurological diseases.
                    ``(K) Others with expertise in research and care of 
                PF.
            ``(2) Duties.--The Advisory Board shall--
                    ``(A) review information and make recommendations 
                to the Secretary concerning--
                            ``(i) the development and maintenance of 
                        the National PF Registry;
                            ``(ii) the type of information to be 
                        collected and stored in the National PF 
                        Registry;
                            ``(iii) the manner in which such data is to 
                        be collected;
                            ``(iv) the use and availability of such 
                        data, including guidelines for such use; and
                            ``(v) the collection of information about 
                        diseases and disorders that primarily affect 
                        the lungs that are considered essential to 
                        furthering the study and cure of PF; and
                    ``(B) consult with the Director of the Centers for 
                Disease Control and Prevention regarding preparation of 
                the National Pulmonary Fibrosis Action Plan under 
                section 5(a) of the Pulmonary Fibrosis Research 
                Enhancement Act.
            ``(3) Report.--Not later than 1 year after the date on 
        which the Advisory Board is established, the Advisory Board 
        shall submit to the Secretary, the Committee on Energy and 
        Commerce of the House of Representatives, and the Health, 
        Education, Labor, and Pensions Committee of the Senate a report 
        on the review conducted under paragraph (2), including the 
        recommendations of the Advisory Board resulting from such 
        review.
    ``(c) Grants.--The Secretary, acting through the Director of the 
Centers for Disease Control and Prevention, may award grants to, and 
enter into contracts and cooperative agreements with, public or private 
nonprofit entities for the collection, analysis, and reporting of data 
on PF and other interstitial lung diseases that can be confused with 
PF, be misdiagnosed as PF, and in some cases progress to PF.
    ``(d) Coordination With State, Local, and Federal Registries.--
            ``(1) In general.--In establishing the National PF Registry 
        under subsection (a), the Secretary shall--
                    ``(A) identify, build upon, expand, and coordinate 
                among existing data and surveillance systems, surveys, 
                registries, and other Federal public health and 
                environmental infrastructure wherever possible, 
                including--
                            ``(i) existing systems in place at 
                        universities, medical centers, and government 
                        agencies;
                            ``(ii) State-based PF registries, National 
                        Institutes of Health registries, and Department 
                        of Veterans Affairs registries, as available; 
                        and
                            ``(iii) any other relevant databases that 
                        collect or maintain information on interstitial 
                        lung diseases; and
                    ``(B) provide for research access to PF data in 
                accordance with applicable statutes and regulations, 
                including those protecting personal privacy.
            ``(2) Coordination with nih and department of veterans 
        affairs.--Consistent with applicable privacy statutes and 
        regulations, the Secretary shall ensure that epidemiological 
        and other types of information obtained under subsection (a) is 
        made available to the National Institutes of Health and the 
        Department of Veterans Affairs.
    ``(e) Authorization of Appropriations.--There are authorized to be 
appropriated to carry out this section $5,000,000 for fiscal year 2010 
and $2,500,000 for each of the fiscal years 2011 through 2014.''.

SEC. 4. PULMONARY FIBROSIS RESEARCH EXPANSION.

    Subpart 2 of part C of title IV of the Public Health Service Act 
(42 U.S.C. 285b et seq.) is amended by adding at the end the following:

``SEC. 424D. PULMONARY FIBROSIS RESEARCH EXPANSION.

    ``The Director of the Institute is encouraged to expand, intensify, 
and coordinate the activities of the Institute with respect to research 
on pulmonary fibrosis, as appropriate.''.

SEC. 5. NATIONAL PULMONARY FIBROSIS ACTION PLAN.

    (a) In General.--
            (1) Preparation of plan.--The Director of the Centers for 
        Disease Control and Prevention, in consultation with the 
        National Pulmonary Fibrosis Advisory Board established under 
        section 317U of the Public Health Service Act, as added by 
        section 3 of this Act, shall prepare a comprehensive plan (in 
        this section referred to as the ``National Pulmonary Fibrosis 
        Action Plan'').
            (2) Report to congress.--Not later than one year after the 
        date of the enactment of this Act, the Director of the Centers 
        for Disease Control and Prevention shall submit the National 
        Pulmonary Fibrosis Action Plan to the Committee on Energy and 
        Commerce and the Committee on Appropriations of the House of 
        Representatives and to the Committee on Health, Education, 
        Labor, and Pensions and the Committee on Appropriations of the 
        Senate.
    (b) Content.--The National Pulmonary Fibrosis Action Plan shall--
            (1) focus on strategies to increase public education and 
        awareness of pulmonary fibrosis;
            (2) accelerate patient education strategies, with respect 
        to pulmonary fibrosis, nationwide;
            (3) address the need for new physician education strategies 
        to improve diagnosis and treatment standards with respect to 
        pulmonary fibrosis;
            (4) assess and monitor the costs of pulmonary fibrosis and 
        its burden on patients and families; and
            (5) develop such strategies in partnership with patients, 
        patient advocates, and others with expertise in research and 
        care of pulmonary fibrosis.
    (c) Authorization of Appropriations.--There are authorized to be 
appropriated to carry out this section $1,000,000 for fiscal year 2010.

SEC. 6. NATIONAL SUMMIT.

    (a) In General.--Not later than one year after the date of the 
enactment of this Act, and every three years thereafter, the Secretary 
of Health and Human Services shall convene a summit of researchers, 
representatives of academic institutions, Federal and State 
policymakers, public health professionals, and patients, patient 
advocates, and others with expertise in research and care of pulmonary 
fibrosis to provide a detailed overview of current research activities 
at the National Institutes of Health, as well as to discuss and solicit 
input related to potential areas of collaboration between the National 
Institutes of Health and other Federal health agencies, including the 
Centers for Disease Control and Prevention, related to research, 
prevention, and treatment of pulmonary fibrosis.
    (b) Focus Areas.--The summit convened under subsection (a) shall 
focus on--
            (1) a broad range of research activities relating to the 
        epidemiology and pathogenesis of pulmonary fibrosis;
            (2) clinical research for the development and evaluation of 
        treatments for pulmonary fibrosis;
            (3) translational research on evidence-based and cost-
        effective best practices in the treatment, prevention, and 
        management of pulmonary fibrosis;
            (4) information and education programs on pulmonary 
        fibrosis for health care professionals and the public;
            (5) priorities among the programs and activities of the 
        various Federal agencies regarding pulmonary fibrosis; and
            (6) challenges and opportunities relating to pulmonary 
        fibrosis for scientists, clinicians, patients, and patient 
        advocates.
    (c) Report to Congress.--Not later than 180 days after the first 
day that the summit convenes under this section, the Director of the 
National Institutes of Health shall prepare and submit to the Committee 
on Energy and Commerce of the House of Representatives and the 
Committee on Health, Education, Labor, and Pensions of the Senate a 
report that includes a summary of the proceedings of the summit and a 
description of pulmonary fibrosis research, education, and other 
activities that are conducted or supported through the national 
research institutes of the National Institutes of Health.
    (d) Public Information.--The Secretary of Health and Human Services 
shall make readily available to the public information about the 
research, education, and other activities relating to pulmonary 
fibrosis and other related diseases conducted or supported by the 
National Institutes of Health.
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