[Congressional Bills 113th Congress]
[From the U.S. Government Publishing Office]
[H.R. 1281 Introduced in House (IH)]
113th CONGRESS
1st Session
H. R. 1281
To amend the Public Health Service Act to reauthorize programs under
part A of title XI of such Act.
_______________________________________________________________________
IN THE HOUSE OF REPRESENTATIVES
March 20, 2013
Ms. Roybal-Allard (for herself and Mr. Simpson) introduced the
following bill; which was referred to the Committee on Energy and
Commerce
_______________________________________________________________________
A BILL
To amend the Public Health Service Act to reauthorize programs under
part A of title XI of such Act.
Be it enacted by the Senate and House of Representatives of the
United States of America in Congress assembled,
SECTION 1. SHORT TITLE; TABLE OF CONTENTS.
(a) Short Title.--This Act may be cited as the ``Newborn Screening
Saves Lives Reauthorization Act of 2013''.
(b) Table of Contents.--The table of contents of this Act is as
follows:
Sec. 1. Short title; table of contents.
Sec. 2. Improved newborn and child screening for heritable disorders.
Sec. 3. Evaluating the effectiveness of newborn and child screening and
followup programs.
Sec. 4. Advisory committee on heritable disorders in newborns and
children.
Sec. 5. Clearinghouse of Newborn Screening Information.
Sec. 6. Laboratory quality.
Sec. 7. Interagency Coordinating Committee on Newborn and Child
Screening.
Sec. 8. National contingency plan for newborn screening.
Sec. 9. Hunter Kelly Research Program.
Sec. 10. Newborn screening surveillance, followup, and applied
research.
Sec. 11. Authorization of appropriations.
SEC. 2. IMPROVED NEWBORN AND CHILD SCREENING FOR HERITABLE DISORDERS.
Section 1109 of the Public Health Service Act (42 U.S.C. 300b-8) is
amended--
(1) in subsection (a)--
(A) in the matter preceding paragraph (1), by
striking ``and in consultation with the Advisory
Committee'' and inserting ``and taking into
consideration the recommendations of the Advisory
Committee'';
(B) in paragraph (2), by striking ``screening and
training'' and inserting ``screening, counseling, and
training''; and
(C) in paragraph (4), by striking ``treatment'' and
inserting ``followup and treatment'';
(2) in subsection (b)--
(A) in paragraph (4), by striking ``or'' at the
end;
(B) by redesignating paragraph (5) as paragraph
(7); and
(C) by inserting after paragraph (4) the following:
``(5) a health professional organization;
``(6) an early childhood health system; or''; and
(3) by striking subsection (j) (relating to authorization
of appropriations).
SEC. 3. EVALUATING THE EFFECTIVENESS OF NEWBORN AND CHILD SCREENING AND
FOLLOWUP PROGRAMS.
Section 1110 of the Public Health Service Act (42 U.S.C. 300b-9) is
amended--
(1) in the section heading, by inserting ``and followup''
after ``child screening'';
(2) in subsection (a), by inserting ``followup,'' after
``the effectiveness of screening,'';
(3) in subsection (b)--
(A) in paragraph (1), by inserting ``ascertainment,
treatment,'' after ``the effectiveness of screening,
counseling,'';
(B) in paragraph (2)--
(i) by inserting ``ascertainment,
treatment,'' after ``the effectiveness of
screening, counseling,''; and
(ii) by striking ``or'' at the end;
(C) in paragraph (3), by striking the period at the
end and inserting ``; or''; and
(D) by adding at the end the following:
``(4) the availability and effectiveness of treatment and
followup care for newborns and their families after screening
and diagnosis.''; and
(4) by striking subsection (d) (relating to authorization
of appropriations).
SEC. 4. ADVISORY COMMITTEE ON HERITABLE DISORDERS IN NEWBORNS AND
CHILDREN.
Section 1111 of the Public Health Service Act (42 U.S.C. 300b-10)
is amended--
(1) in subsection (b)--
(A) in paragraph (4), by striking ``public health
impact'' and inserting ``public health impact and
cost''; and
(B) in paragraph (6)--
(i) in subparagraph (A), by striking
``achieve rapid diagnosis'' and inserting
``achieve best practices in rapid diagnosis and
appropriate treatment''; and
(ii) in subparagraph (D), by inserting
before the semicolon ``, including information
on cost and incidence'';
(2) by redesignating subsections (f) and (g) as subsections
(g) and (h), respectively;
(3) by inserting after subsection (e) the following new
subsection:
``(f) Meetings.--The Advisory Committee shall meet in person at
least twice each year.'';
(4) by amending subsection (g), as redesignated by
paragraph (2), to read as follows:
``(g) Continuation of Operation of Committee.--
``(1) In general.--Notwithstanding section 14 of the
Federal Advisory Committee Act (5 U.S.C. App.), the Advisory
Committee shall continue to operate for the period beginning on
the date of enactment of the Newborn Screening Saves Lives
Reauthorization Act of 2013 and concluding at the end of the
fifth fiscal year which begins after such date.
``(2) Continuation if not reauthorized.--If at the end of
the fifth fiscal year described in paragraph (1) the duration
of the Advisory Committee has not been extended by statute--
``(A) the Advisory Committee may be considered, for
the purposes of the Federal Advisory Committee Act, to
be an advisory committee established by the President
or an officer of the Federal Government under section
9(a) of such Act; and
``(B) the Secretary may renew the Advisory
Committee under section 14(a)(1)(A) of such Act.''; and
(5) by striking subsection (h) (relating to authorization
of appropriations), as redesignated by paragraph (2).
SEC. 5. CLEARINGHOUSE OF NEWBORN SCREENING INFORMATION.
Section 1112 of the Public Health Service Act (42 U.S.C. 300b-11)
is amended--
(1) in subsection (a)--
(A) in paragraph (2), by striking ``; and'' and
inserting a semicolon;
(B) in paragraph (3), by striking the period at the
end and inserting a semicolon; and
(C) by adding at the end the following new
paragraphs:
``(4) maintain current data on the number of conditions for
which screening is conducted in each State; and
``(5) establish or disseminate guidelines for services and
personnel necessary for followup, diagnosis, counseling, and
treatment with respect to conditions detected by newborn
screening.'';
(2) in subsection (b)(4)(D), by striking ``Newborn
Screening Saves Lives Act of 2008'' and inserting ``Newborn
Screening Saves Lives Reauthorization Act of 2013''; and
(3) by striking subsection (d) (relating to authorization
of appropriations).
SEC. 6. LABORATORY QUALITY.
Section 1113 of the Public Health Service Act (42 U.S.C. 300b-12)
is amended--
(1) in subsection (a)--
(A) by striking the subsection enumerator and
heading; and
(B) by striking ``and in consultation with the
Advisory Committee'' and inserting ``and taking into
consideration the recommendations of the Advisory
Committee''; and
(2) by striking subsection (b) (relating to authorization
of appropriations).
SEC. 7. INTERAGENCY COORDINATING COMMITTEE ON NEWBORN AND CHILD
SCREENING.
Section 1114 of the Public Health Service Act (42 U.S.C. 300b-13)
is amended--
(1) in subsection (c), by striking ``the Administrator, the
Director of the Agency for Healthcare Research and Quality''
and inserting ``the Administrator of the Health Resources and
Services Administration, the Director of the Agency for
Healthcare Research and Quality, the Commissioner of Food and
Drugs,''; and
(2) by striking subsection (e) (relating to authorization
of appropriations) and inserting the following:
``(e) Report to Congress.--
``(1) In general.--The Secretary shall--
``(A) not later than 1 year after the date of
enactment of the Newborn Screening Saves Lives
Reauthorization Act of 2013, submit to the Health,
Education, Labor, and Pensions Committee of the Senate
and the Energy and Commerce Committee of the House of
Representatives a report on activities related to--
``(i) newborn screening; and
``(ii) screening children who have or are
at risk for heritable disorders; and
``(B) not less than every 2 years, shall submit to
such committees an updated version of such report.
``(2) Contents.--The report submitted under subsection (a)
shall contain a description of--
``(A) the implementation of sections 1111 through
1116B, including this section; and
``(B) the amounts expended on such
implementation.''.
SEC. 8. NATIONAL CONTINGENCY PLAN FOR NEWBORN SCREENING.
Section 1115(a) of the Public Health Service Act (42 U.S.C. 300b-
14(a)) is amended by adding at the end the following: ``The plan shall
be updated as needed and at least every five years.''.
SEC. 9. HUNTER KELLY RESEARCH PROGRAM.
Section 1116(a)(1) of the Public Health Service Act (42 U.S.C.
300b-15(a)(1)) is amended--
(1) in subparagraph (B), by striking ``; and'' and
inserting a semicolon;
(2) by redesignating subparagraph (C) as subparagraph (E);
and
(3) by inserting after subparagraph (B) the following:
``(C) providing research and data for newborn
conditions under review by the Advisory Committee on
Heritable Disorders in Newborns and Children to be
added to the Recommended Uniform Screening Panel;
``(D) conducting pilot studies on conditions
recommended by the Advisory Committee on Heritable
Disorders in Newborns and Children to ensure that
screenings are ready for nationwide implementation;
and''.
SEC. 10. NEWBORN SCREENING SURVEILLANCE, FOLLOWUP, AND APPLIED
RESEARCH.
The Public Health Service Act is amended by inserting after section
1116 of such Act (42 U.S.C. 300b-15) the following:
``SEC. 1116A. NEWBORN SCREENING SURVEILLANCE, FOLLOWUP, AND APPLIED
RESEARCH.
``(a) In General.--The Secretary, acting through the Director of
the Centers for Disease Control and Prevention, shall award grants to,
or enter into cooperative agreements with, eligible entities to develop
longitudinal followup and tracking programs for newborn screening.
``(b) Program.--Longitudinal followup and tracking programs
developed through a grant under subsection (a) shall incorporate
standardized procedures for data management and program effectiveness
and costs, such as--
``(1) studying the costs and effectiveness of newborn
screening, evaluation and intervention programs, and
surveillance systems conducted by State-based programs in order
to answer issues of importance to State and national
policymakers;
``(2) studying the effectiveness of newborn screening
followup and intervention programs by assessing the health and
development of children at school age and as young adults;
``(3) promoting the sharing of data regarding newborn
screening with State-based birth defects and developmental
disabilities monitoring programs;
``(4) ensuring coordination of surveillance activities,
including--
``(A) standardized data collection and reporting;
and
``(B) use of electronic health records;
``(5) facilitating quality improvement in treatment and
disease management based on gaps in services or care identified
by longitudinal tracking systems; and
``(6) utilizing data from longitudinal tracking systems to
support the development and evaluation of evidence-based
guidelines for diagnosis, treatment, and disease management.
``(c) Eligible Entity.--In this section, the term `eligible entity'
means--
``(1) a State or a political subdivision of a State;
``(2) a consortium of 2 or more States or subdivisions
described in paragraph (1);
``(3) a health facility or program operated by or pursuant
to a contract with, or a grant from, the Indian Health Service;
or
``(4) any other entity with appropriate expertise in
newborn screening, as determined by the Secretary.''.
SEC. 11. AUTHORIZATION OF APPROPRIATIONS.
The Public Health Service Act is amended by inserting after section
1116A of such Act, as added by section 10 of this Act, the following:
``SEC. 1116B. AUTHORIZATION OF APPROPRIATIONS FOR NEWBORN SCREENING
PROGRAMS AND ACTIVITIES.
``There are authorized to be appropriated--
``(1) to carry out sections 1109, 1110, 1111, and 1112,
$13,334,000 for each of fiscal years 2014 through 2018;
``(2) to carry out section 1113, $7,500,000 for each of
fiscal years 2014 through 2018; and
``(3) to carry out section 1116A, $5,000,000 for each of
fiscal years 2014 through 2018.''.
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