[House Report 113-557]
[From the U.S. Government Publishing Office]
113th Congress Report
HOUSE OF REPRESENTATIVES
2d Session 113-557
======================================================================
SUDDEN UNEXPECTED DEATH DATA ENHANCEMENT AND AWARENESS ACT
_______
July 24, 2014.--Committed to the Committee of the Whole House on the
State of the Union and ordered to be printed
_______
Mr. Upton, from the Committee on Energy and Commerce,
submitted the following
R E P O R T
[To accompany H.R. 669]
[Including cost estimate of the Congressional Budget Office]
The Committee on Energy and Commerce, to whom was referred
the bill (H.R. 669) to amend the Public Health Service Act to
improve the health of children and help better understand and
enhance awareness about unexpected sudden death in early life,
having considered the same, report favorably thereon with an
amendment and recommend that the bill as amended do pass.
CONTENTS
Page
Purpose and Summary.............................................. 4
Background and Need for Legislation.............................. 4
Hearings......................................................... 5
Committee Consideration.......................................... 5
Committee Votes.................................................. 5
Committee Oversight Findings..................................... 5
Statement of General Performance Goals and Objectives............ 5
New Budget Authority, Entitlement Authority, and Tax Expenditures 6
Earmark, Limited Tax Benefits, and Limited Tariff Benefits....... 6
Committee Cost Estimate.......................................... 6
Congressional Budget Office Estimate............................. 6
Federal Mandates Statement....................................... 7
Duplication of Federal Programs.................................. 7
Disclosure of Directed Rule Makings.............................. 7
Advisory Committee Statement..................................... 7
Applicability to Legislative Branch.............................. 7
Section-by-Section Analysis of the Legislation................... 8
Changes in Existing Law Made by the Bill, as Reported............ 8
The amendment is as follows:
Strike all after the enacting clause and insert the
following:
SECTION 1. SHORT TITLE.
This Act may be cited as the ``Sudden Unexpected Death Data
Enhancement and Awareness Act''.
SEC. 2. STILLBIRTH AND SUDDEN DEATHS IN THE YOUNG.
The Public Health Service Act is amended by inserting after section
317L of such Act (42 U.S.C. 247b-13) the following:
``SEC. 317L-1. STILLBIRTH AND SUDDEN DEATHS IN THE YOUNG.
``(a) Stillbirth Activities.--The Secretary, acting through the
Director of the Centers for Disease Control and Prevention, shall
continue to carry out activities of the Centers relating to stillbirth,
including the following:
``(1) Surveillance.--
``(A) In general.--The Secretary shall provide for
surveillance efforts to collect thorough, complete, and
high-quality epidemiologic information on stillbirths,
including through the utilization of existing
surveillance systems (including the National Vital
Statistics System (NVSS) and other appropriately
equipped birth defects surveillance programs).
``(B) Standard protocol for surveillance.--The
Secretary, in consultation with qualified individuals
and organizations determined appropriate by the
Secretary, to include representatives of health and
advocacy organizations, State and local governments,
public health officials, and health researchers,
shall--
``(i) provide for the continued development
and dissemination of a standard protocol for
stillbirth data collection and surveillance;
and
``(ii) not less than every 5 years, review
and, as appropriate, update such protocol.
``(2) Postmortem data collection and evaluation.--The
Secretary, in consultation with qualified individuals and
organizations determined appropriate by the Secretary, to
include representatives of health professional organizations,
shall--
``(A) upon the enactment of this section, and not
less than every 5 years thereafter, review existing
guidelines for increasing and improving the quality and
completeness of postmortem stillbirth evaluation and
related data collection, including conducting and
reimbursing autopsies, placental histopathology, and
cytogenetic testing; and
``(B) develop strategies for implementing such
guidelines and addressing any barriers to
implementation of such guidelines.
``(b) Sudden Unexpected Infant Death Activities.--The Secretary,
acting through the Director of the Centers for Disease Control and
Prevention, shall continue to carry out activities of the Centers
relating to sudden unexpected infant death (SUID), including the
following:
``(1) Surveillance.--
``(A) In general.--The Secretary shall provide for
surveillance efforts to gather sociodemographic, death
scene investigation, clinical history, and autopsy
information on SUID cases through the review of
existing records on SUID, including through the
utilization of existing surveillance systems (including
the national child death review case reporting system
and SUID case registries).
``(B) Standard protocol for surveillance.--The
Secretary, in consultation with qualified individuals
and organizations determined appropriate by the
Secretary, to include representatives of health and
advocacy organizations, State and local governments,
and public health officials, shall--
``(i) provide for the continued development
and dissemination of a standard protocol for
SUID data reporting and surveillance; and
``(ii) not less than every 5 years, review
and, as appropriate, update such protocol.
``(C) Goals for enhancing surveillance.--In carrying
out activities under this subsection, the Secretary
shall seek to accomplish the following goals:
``(i) Collecting thorough, complete, and
high-quality death scene investigation data,
clinical history, and autopsy findings.
``(ii) Collecting standardized information
about the environmental and medical
circumstances of death (including the sleep
environment and quality of the death scene
investigation).
``(iii) Supporting multidisciplinary infant
death reviews, such as those performed by child
death review committees, to collect and review
the information and classify and characterize
SUID using a standardized classification
system.
``(iv) Facilitating the sharing of
information to improve the public reporting of
surveillance and vital statistics describing
the epidemiology of SUID.
``(2) Standard protocol for death scene investigation.--
``(A) In general.--The Secretary, in consultation
with forensic pathologists, medical examiners,
coroners, medicolegal death scene investigators, law
enforcement personnel, emergency medical technicians
and paramedics, public health agencies, and other
individuals and organizations determined appropriate by
the Secretary, shall--
``(i) provide for the continued dissemination
of a standard death scene investigation
protocol; and
``(ii) not less than every 5 years, review
and, as appropriate, update such protocol.
``(B) Content of death scene protocol.--The protocol
disseminated under subparagraph (A) shall include
information on--
``(i) the current and past medical history of
the infant;
``(ii) family medical history;
``(iii) the circumstances surrounding the
death, including any suspicious circumstances;
``(iv) the sleep position and sleep
environment of the infant; and
``(v) any accidental or environmental factors
associated with death.
``(3) Guidelines for a standard autopsy protocol.--The
Secretary, in consultation with the Attorney General of the
United States, forensic pathologists, medical examiners,
coroners, pediatric pathologists, pediatric cardiologists,
pediatric neuropathologists, geneticists, infectious disease
specialists, and other individuals and organizations determined
appropriate by the Secretary, shall--
``(A) develop guidelines for a standard autopsy
protocol for SUID; and
``(C) not less than every 5 years, review and, as
appropriate, update such guidelines.
``(4) Training.--The Secretary, in consultation with the
Attorney General of the United States, may--
``(A) conduct or support--
``(i) training activities for medical
examiners, coroners, medicolegal death scene
investigators, law enforcement personnel, and
emergency medical technicians or paramedics
concerning death scene investigations for SUID,
including the use of standard death scene
investigation protocols disseminated under
paragraph (2); and
``(ii) training activities for medical
examiners, coroners, and forensic pathologists
concerning standard autopsy protocols for SUID
developed under paragraph (3); and
``(B) make recommendations to health professional
organizations regarding the integration of protocols
disseminated or developed under this subsection, and
training conducted or supported under this paragraph,
into existing training and continuing education
programs.
``(c) Sudden Unexplained Death in Childhood Activities.--The
Secretary, acting through the Director of the Centers for Disease
Control and Prevention, shall continue to carry out activities of the
Centers relating to sudden unexpected death in childhood (SUDC),
including the following:
``(1) Surveillance.--The Secretary, in consultation with the
Director of the National Institutes of Health, shall provide
for surveillance efforts to gather sociodemographic, death
scene investigation, clinical history, and autopsy information
on SUDC cases through the review of existing records on SUDC,
including through the utilization of existing surveillance
systems (including the Sudden Death in the Young Registry).
``(2) Guidelines for a standard autopsy protocol.--The
Secretary, in consultation with the Attorney General of the
United States, forensic pathologists, medical examiners,
coroners, pediatric pathologists, pediatric cardiologists,
pediatric neuropathologists, geneticists, infectious disease
specialists, and other individuals and organizations determined
appropriate by the Secretary, may--
``(A) develop guidelines for a standard autopsy
protocol for SUDC; and
``(B) not less than every 5 years, review and, as
appropriate, update such guidelines.
``(3) Review of applicability of programs and activities.--
Not later than 18 months after the date of enactment of this
section, the Secretary, acting through the Director of the
Centers for Disease Control and Prevention, and in consultation
with the Director of the National Institutes of Health, shall
complete an evaluation of the possibility of carrying out or
intensifying, with respect to SUDC, the types of programs and
activities that are authorized to be carried out under
subsection (b) with respect to SUID.
``(d) Report to Congress.--Not later than 2 years after the date of
enactment of this Act, the Secretary, acting through the Director of
the Centers for Disease Control and Prevention, shall submit to the
Congress a report on the implementation of this section. Such report
shall include--
``(1) the results of the evaluation under subsection (c)(3);
and
``(2) a description of any activities that--
``(A) are being carried out by the Centers for
Disease Control and Prevention in consultation with the
National Institutes of Health relating to stillbirth,
SUID, or SUDC; and
``(B) are in addition to the activities being carried
out pursuant to this section.
``(e) Definitions.--In this section:
``(1) The term `stillbirth' means a spontaneous fetal death
that--
``(A) occurs at 20 or more weeks gestation; or
``(B) if the age of the fetus is not known, involves
a fetus weighing 350 grams or more.
``(2) The terms `sudden unexpected infant death' and `SUID'
mean the death of an infant less than 1 year of age--
``(A) which occurs suddenly and unexpectedly; and
``(B) whose cause--
``(i) is not immediately obvious prior to
investigation; and
``(ii) is either explained upon investigation
or remains unexplained.
``(3) The terms `sudden unexplained death in childhood' and
`SUDC' mean the sudden death of a child 1 year of age or older
which remains unexplained after a thorough case investigation
that includes--
``(A) a review of the clinical history and
circumstances of death; and
``(B) performance of a complete autopsy with
appropriate ancillary testing.
``(f) Funding.--This section shall not be construed to increase the
amount of appropriations that are authorized to be appropriated for any
fiscal year.''.
Purpose and Summary
H.R. 669, the ``Sudden Unexpected Death Data Enhancement
and Awareness Act,'' was introduced on February 13, 2013, by
Rep. Pallone (D-NJ) and King (R-NY) to improve the health of
children and better understand unexpected sudden death in early
life.
Background and Need for Legislation
Fetal death or stillbirth occurs after 20 weeks of
pregnancy in about 1 in 160 pregnancies. Causes of stillbirth
vary from birth defects to umbilical accidents. Risk factors
include maternal age, maternal obesity, and ancestry.\1\
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\1\http://www.marchofdimes.com/loss/stillbirth.aspx.
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Sudden unexpected infant death (SUID) occurs in infants
less than 1 year of age. There are about 4,000 infants that die
of SUID each year, often with no known cause. Sudden Infant
Death Syndrome (SIDS) accounts for half of the SUID cases. The
overall rate of SIDS has declined more than 50 percent since
1990, but rates for certain minority groups remain
disproportionately higher than the rest of the population.\2\
---------------------------------------------------------------------------
\2\http://www.cdc.gov/sids/aboutsuidandsids.htm.
---------------------------------------------------------------------------
Sudden Unexplained Death in Children (SUDC) occurs in
children over the age of 12 months, and it often remains
unexplained, even after a thorough investigation. SUDC is rare,
with an incidence of 1.2 deaths per 100,000 children. Since its
cause is unknown, more study is needed to identify prevention
strategies.\3\
---------------------------------------------------------------------------
\3\http://www.sudc.org/Advocacy/MediaEducation/FactSheet.aspx.
---------------------------------------------------------------------------
Prevention of stillbirth, SUID, and SUDC depends on the
collection of data related to the biological, social, and
environmental factors associated with these outcomes. The
Centers for Disease Control and Prevention (CDC) collects data
on stillbirth (fetal death), SUID, and SUDC through its
existing surveillance systems in order to identify the extent
of the problem and risk factors. Since State reporting
procedures vary, the ability of the CDC to collect national
data related to stillbirth, SUID, and SUDC has been
hampered.\4\
---------------------------------------------------------------------------
\4\http://www.cdc.gov/sids/suidabout.htm.
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H.R. 669 would authorize activities at the CDC to help
improve the understanding of stillbirth, SUID, and SUDC by
improving data collection, increasing surveillance strategies,
and setting guidelines and protocols for death scene
investigations and autopsies.
Hearings
On Wednesday, November 20, 2013, the Subcommittee on Health
held a hearing on H.R. 669. The Subcommittee received testimony
from:
Marsha Ford, President, American
Association of Poison Control Centers;
Edward McCabe, Office of Medicine and
Health Promotion, March of Dimes Foundation;
Laura Crandall, Co-Founder, Sudden
Unexplained Death Program at the CJ Foundation for
SIDS;
Robert Mt. Joy, CEO, Cornerstone Care Inc.;
Drew Nagele, Board of Directors, Brain
Injury Association of America;
Pat Smith, President, Lyme Disease
Association, Inc.; and,
Steven J. Stack, Board of Trustees,
American Medical Association.
Committee Consideration
On June 19, 2014, the Subcommittee on Health met in open
markup session and forwarded H.R. 669 to the full Committee, as
amended, by a voice vote. On July 15, 2014, the Committee on
Energy and Commerce met in open markup session and ordered H.R.
669 to be reported to the House, as amended, by a voice vote.
Committee Votes
Clause 3(b) of rule XIII of the Rules of the House of
Representatives requires the Committee to list the record votes
on the motion to report legislation and amendments thereto.
There were no record votes taken in connection with ordering
H.R. 669 reported. A motion by Mr. Upton to order H.R. 669
reported to the House, as amended, was agreed to by a voice
vote
Committee Oversight Findings
Pursuant to clause 3(c)(1) of rule XIII of the Rules of the
House of Representatives, the Committee held a hearing and made
findings that are reflected in this report.
Statement of General Performance Goals and Objectives
Pursuant to clause 3(c)(1) of rule XIII of the House of
Representatives, the goal of H.R. 669 is to help improve the
understanding of stillbirth, SUID, and SUDC by improving data
collection, increasing surveillance strategies, and setting
guidelines and protocols for death scene investigations and
autopsies.
New Budget Authority, Entitlement Authority, and Tax Expenditures
In compliance with clause 3(c)(2) of rule XIII of the Rules
of the House of Representatives, the Committee finds that H.R.
669, would result in no new or increased budget authority,
entitlement authority, or tax expenditures or revenues.
Earmark, Limited Tax Benefits, and Limited Tariff Benefits
In compliance with clause 9(e), 9(f), and 9(g) of rule XXI
of the Rules of the House of Representatives, the Committee
finds that H.R. 669 contains no earmarks, limited tax benefits,
or limited tariff benefits.
Committee Cost Estimate
The Committee adopts as its own the cost estimate prepared
by the Director of the Congressional Budget Office pursuant to
section 402 of the Congressional Budget Act of 1974.
Congressional Budget Office Estimate
Pursuant to clause 3(c)(3) of rule XIII of the Rules of the
House of Representatives, the following is the cost estimate
provided by the Congressional Budget Office pursuant to section
402 of the Congressional Budget Act of 1974:
U.S. Congress,
Congressional Budget Office,
Washington, DC, July 23, 2014.
Hon. Fred Upton,
Chairman, Committee on Energy and Commerce,
House of Representatives, Washington, DC.
Dear Mr. Chairman: The Congressional Budget Office has
prepared the enclosed cost estimate for H.R. 669, the Sudden
Unexpected Death Data Enhancement and Awareness Act.
If you wish further details on this estimate, we will be
pleased to provide them. The CBO staff contact is Santiago
Vallinas.
Sincerely,
Douglas W. Elmendorf.
Enclosure.
H.R. 669--Sudden Unexpected Death Data Enhancement and Awareness Act
H.R. 669 would require the Secretary of Health and Human
Services (HHS), acting through the Centers for Disease Control
and Prevention (CDC), to continue to carry out certain
activities relating to sudden unexpected death in the young.
The legislation would direct the Secretary of HHS to:
Support surveillance efforts relating to
stillbirths and sudden unexpected death in children,
including the development of standard protocols for
data collection;
Promote standard protocols for the
investigation of death scenes; and
Review and update guidelines for post-
mortem data collection and for certain types of autopsy
examinations.
The CDC currently supports such activities; thus, CBO
estimates that requiring those same activities under H.R. 669
would have no incremental cost to the federal government.
The bill would also require the Secretary to submit a
report to the Congress on activities relating to stillbirth and
sudden deaths in the young. CBO expects that the costs of
producing that report would be negligible.
CBO estimates that implementing H.R. 669 would not have a
significant effect on federal spending. The bill would not
affect direct spending or revenues; therefore, pay-as-you-go
procedures do not apply.
H.R. 669 contains no intergovernmental or private-sector
mandates as defined in the Unfunded Mandates Reform Act and
would impose no costs on state, local, or tribal governments.
The CBO staff contacts for this estimate are Santiago
Vallinas and Stephanie Cameron. This estimate was approved by
Holly Harvey, Deputy Assistant Director for Budget Analysis.
Federal Mandates Statement
The Committee adopts as its own the estimate of Federal
mandates prepared by the Director of the Congressional Budget
Office pursuant to section 423 of the Unfunded Mandates Reform
Act.
Duplication of Federal Programs
No provision of H.R. 669 establishes or reauthorizes a
program of the Federal Government known to be duplicative of
another Federal program, a program that was included in any
report from the Government Accountability Office to Congress
pursuant to section 21 of Public Law 111-139, or a program
related to a program identified in the most recent Catalog of
Federal Domestic Assistance.
Disclosure of Directed Rule Makings
The Committee estimates that enacting H.R. 669 would not
specifically direct a rulemaking within the meaning of 5 U.S.C.
551.
Advisory Committee Statement
No advisory committees within the meaning of section 5(b)
of the Federal Advisory Committee Act were created by this
legislation.
Applicability to Legislative Branch
The Committee finds that the legislation does not relate to
the terms and conditions of employment or access to public
services or accommodations within the meaning of section
102(b)(3) of the Congressional Accountability Act.
Section-by-Section Analysis of the Legislation
Section 1. Short title
Section 1 states the legislation may be cited as the
``Sudden Unexpected Death Data Enhancement and Awareness Act''.
Section 2. Stillbirth and sudden deaths in the young
Section 2 would authorize the continuation of data
collection activities related to stillbirth, including the
development and dissemination of a standard protocol for
surveillance and a review of existing guidelines for postmortem
stillbirth evaluation.
The section would allow the continuation of activities
related to SUID, including surveillance of various events and
records, such as a death scene investigation. A standard
protocol for surveillance and death scene investigations
related to SUID also would be developed. Guidelines for a
standard autopsy protocol would be developed in consultation
with Attorney General.
In addition, the section would allow the continuation of
activities related to SUDC including surveillance.
Finally, the section would provide for a review of SUID
programs and a report to Congress on the implementation of the
activities in this section.
Changes in Existing Law Made by the Bill, as Reported
In compliance with clause 3(e) of rule XIII of the Rules of
the House of Representatives, changes in existing law made by
the bill, as reported, are shown as follows (new matter is
printed in italic and existing law in which no change is
proposed is shown in roman):
SECTION 317L-1 OF THE PUBLIC HEALTH SERVICE ACT
* * * * * * *
SEC. 317L-1. STILLBIRTH AND SUDDEN DEATHS IN THE YOUNG.
(a) Stillbirth Activities.--The Secretary, acting through the
Director of the Centers for Disease Control and Prevention,
shall continue to carry out activities of the Centers relating
to stillbirth, including the following:
(1) Surveillance.--
(A) In general.--The Secretary shall provide
for surveillance efforts to collect thorough,
complete, and high-quality epidemiologic
information on stillbirths, including through
the utilization of existing surveillance
systems (including the National Vital
Statistics System (NVSS) and other
appropriately equipped birth defects
surveillance programs).
(B) Standard protocol for surveillance.--The
Secretary, in consultation with qualified
individuals and organizations determined
appropriate by the Secretary, to include
representatives of health and advocacy
organizations, State and local governments,
public health officials, and health
researchers, shall--
(i) provide for the continued
development and dissemination of a
standard protocol for stillbirth data
collection and surveillance; and
(ii) not less than every 5 years,
review and, as appropriate, update such
protocol.
(2) Postmortem data collection and evaluation.--The
Secretary, in consultation with qualified individuals
and organizations determined appropriate by the
Secretary, to include representatives of health
professional organizations, shall--
(A) upon the enactment of this section, and
not less than every 5 years thereafter, review
existing guidelines for increasing and
improving the quality and completeness of
postmortem stillbirth evaluation and related
data collection, including conducting and
reimbursing autopsies, placental
histopathology, and cytogenetic testing; and
(B) develop strategies for implementing such
guidelines and addressing any barriers to
implementation of such guidelines.
(b) Sudden Unexpected Infant Death Activities.--The
Secretary, acting through the Director of the Centers for
Disease Control and Prevention, shall continue to carry out
activities of the Centers relating to sudden unexpected infant
death (SUID), including the following:
(1) Surveillance.--
(A) In general.--The Secretary shall provide
for surveillance efforts to gather
sociodemographic, death scene investigation,
clinical history, and autopsy information on
SUID cases through the review of existing
records on SUID, including through the
utilization of existing surveillance systems
(including the national child death review case
reporting system and SUID case registries).
(B) Standard protocol for surveillance.--The
Secretary, in consultation with qualified
individuals and organizations determined
appropriate by the Secretary, to include
representatives of health and advocacy
organizations, State and local governments, and
public health officials, shall--
(i) provide for the continued
development and dissemination of a
standard protocol for SUID data
reporting and surveillance; and
(ii) not less than every 5 years,
review and, as appropriate, update such
protocol.
(C) Goals for enhancing surveillance.--In
carrying out activities under this subsection,
the Secretary shall seek to accomplish the
following goals:
(i) Collecting thorough, complete,
and high-quality death scene
investigation data, clinical history,
and autopsy findings.
(ii) Collecting standardized
information about the environmental and
medical circumstances of death
(including the sleep environment and
quality of the death scene
investigation).
(iii) Supporting multidisciplinary
infant death reviews, such as those
performed by child death review
committees, to collect and review the
information and classify and
characterize SUID using a standardized
classification system.
(iv) Facilitating the sharing of
information to improve the public
reporting of surveillance and vital
statistics describing the epidemiology
of SUID.
(2) Standard protocol for death scene
investigation.--
(A) In general.--The Secretary, in
consultation with forensic pathologists,
medical examiners, coroners, medicolegal death
scene investigators, law enforcement personnel,
emergency medical technicians and paramedics,
public health agencies, and other individuals
and organizations determined appropriate by the
Secretary, shall--
(i) provide for the continued
dissemination of a standard death scene
investigation protocol; and
(ii) not less than every 5 years,
review and, as appropriate, update such
protocol.
(B) Content of death scene protocol.--The
protocol disseminated under subparagraph (A)
shall include information on--
(i) the current and past medical
history of the infant;
(ii) family medical history;
(iii) the circumstances surrounding
the death, including any suspicious
circumstances;
(iv) the sleep position and sleep
environment of the infant; and
(v) any accidental or environmental
factors associated with death.
(3) Guidelines for a standard autopsy protocol.--The
Secretary, in consultation with the Attorney General of
the United States, forensic pathologists, medical
examiners, coroners, pediatric pathologists, pediatric
cardiologists, pediatric neuropathologists,
geneticists, infectious disease specialists, and other
individuals and organizations determined appropriate by
the Secretary, shall--
(A) develop guidelines for a standard autopsy
protocol for SUID; and
(C) not less than every 5 years, review and,
as appropriate, update such guidelines.
(4) Training.--The Secretary, in consultation with
the Attorney General of the United States, may--
(A) conduct or support--
(i) training activities for medical
examiners, coroners, medicolegal death
scene investigators, law enforcement
personnel, and emergency medical
technicians or paramedics concerning
death scene investigations for SUID,
including the use of standard death
scene investigation protocols
disseminated under paragraph (2); and
(ii) training activities for medical
examiners, coroners, and forensic
pathologists concerning standard
autopsy protocols for SUID developed
under paragraph (3); and
(B) make recommendations to health
professional organizations regarding the
integration of protocols disseminated or
developed under this subsection, and training
conducted or supported under this paragraph,
into existing training and continuing education
programs.
(c) Sudden Unexplained Death in Childhood Activities.--The
Secretary, acting through the Director of the Centers for
Disease Control and Prevention, shall continue to carry out
activities of the Centers relating to sudden unexpected death
in childhood (SUDC), including the following:
(1) Surveillance.--The Secretary, in consultation
with the Director of the National Institutes of Health,
shall provide for surveillance efforts to gather
sociodemographic, death scene investigation, clinical
history, and autopsy information on SUDC cases through
the review of existing records on SUDC, including
through the utilization of existing surveillance
systems (including the Sudden Death in the Young
Registry).
(2) Guidelines for a standard autopsy protocol.--The
Secretary, in consultation with the Attorney General of
the United States, forensic pathologists, medical
examiners, coroners, pediatric pathologists, pediatric
cardiologists, pediatric neuropathologists,
geneticists, infectious disease specialists, and other
individuals and organizations determined appropriate by
the Secretary, may--
(A) develop guidelines for a standard autopsy
protocol for SUDC; and
(B) not less than every 5 years, review and,
as appropriate, update such guidelines.
(3) Review of applicability of programs and
activities.--Not later than 18 months after the date of
enactment of this section, the Secretary, acting
through the Director of the Centers for Disease Control
and Prevention, and in consultation with the Director
of the National Institutes of Health, shall complete an
evaluation of the possibility of carrying out or
intensifying, with respect to SUDC, the types of
programs and activities that are authorized to be
carried out under subsection (b) with respect to SUID.
(d) Report to Congress.--Not later than 2 years after the
date of enactment of this Act, the Secretary, acting through
the Director of the Centers for Disease Control and Prevention,
shall submit to the Congress a report on the implementation of
this section. Such report shall include--
(1) the results of the evaluation under subsection
(c)(3); and
(2) a description of any activities that--
(A) are being carried out by the Centers for
Disease Control and Prevention in consultation
with the National Institutes of Health relating
to stillbirth, SUID, or SUDC; and
(B) are in addition to the activities being
carried out pursuant to this section.
(e) Definitions.--In this section:
(1) The term ``stillbirth'' means a spontaneous fetal
death that--
(A) occurs at 20 or more weeks gestation; or
(B) if the age of the fetus is not known,
involves a fetus weighing 350 grams or more.
(2) The terms ``sudden unexpected infant death'' and
``SUID'' mean the death of an infant less than 1 year
of age--
(A) which occurs suddenly and unexpectedly;
and
(B) whose cause--
(i) is not immediately obvious prior
to investigation; and
(ii) is either explained upon
investigation or remains unexplained.
(3) The terms ``sudden unexplained death in
childhood'' and ``SUDC'' mean the sudden death of a
child 1 year of age or older which remains unexplained
after a thorough case investigation that includes--
(A) a review of the clinical history and
circumstances of death; and
(B) performance of a complete autopsy with
appropriate ancillary testing.
(f) Funding.--This section shall not be construed to increase
the amount of appropriations that are authorized to be
appropriated for any fiscal year.