[Congressional Bills 111th Congress]
[From the U.S. Government Publishing Office]
[S. 3703 Introduced in Senate (IS)]
111th CONGRESS
2d Session
S. 3703
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 SENATE OF THE UNITED STATES
August 4, 2010
Mrs. Murray (for herself and Mr. Crapo) introduced the following bill;
which was read twice and referred to the Committee on Health,
Education, Labor, and Pensions
_______________________________________________________________________
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 200,000 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.
(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 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's support for
PF research, H. Con. Res. 182, was agreed to by both Houses of
Congress in 2007.
SEC. 3. PULMONARY FIBROSIS ADVISORY BOARD AND 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 ADVISORY BOARD AND REGISTRY.
``(a) 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, including organization
representing such 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
interstitial lung diseases.
``(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 Education and Awareness
Plan under section 4(a) of the Pulmonary Fibrosis
Research Enhancement Act.
``(3) Report.--Not later than 1 year after the date of
enactment of this section, 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.
``(b) Establishment of Registry.--
``(1) In general.--Not later than 1 year after the receipt
of the report required by subsection (a)(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.
``(c) Coordination With State, Local, and Federal Registries.--
``(1) In general.--In establishing the National PF Registry
under subsection (b), 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 (b) is
made available to the National Institutes of Health and the
Department of Veterans Affairs.
``(d) 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. NATIONAL PULMONARY FIBROSIS EDUCATION AND AWARENESS 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
Education and Awareness Plan'').
(2) Report to congress.--Not later than one year after the
date of the enactment of this Act, and at the same time as the
report is submitted under section 317U(a)(3) of the Public
Health Service Act, the Director of the Centers for Disease
Control and Prevention shall submit the National Pulmonary
Fibrosis Education and Awareness 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 Education and
Awareness 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. 5. 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.''.
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