[Congressional Bills 113th Congress]
[From the U.S. Government Publishing Office]
[H.R. 669 Reported in House (RH)]
Union Calendar No. 417
113th CONGRESS
2d Session
H. R. 669
[Report No. 113-557]
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.
_______________________________________________________________________
IN THE HOUSE OF REPRESENTATIVES
February 13, 2013
Mr. Pallone (for himself and Mr. King of New York) introduced the
following bill; which was referred to the Committee on Energy and
Commerce
July 24, 2014
Additional sponsors: Ms. Speier, Mr. Rangel, Mr. Connolly, Mrs. Carolyn
B. Maloney of New York, Ms. Brownley of California, Ms. Kuster, Mr.
Crawford, Mrs. McCarthy of New York, Mr. Van Hollen, Mr. Moran, Mr.
Jones, Mr. Schiff, Mr. Grijalva, Mr. Hastings of Florida, Ms.
Schakowsky, Mrs. Christensen, Mr. Ellison, Ms. Matsui, and Mr.
Cicilline
July 24, 2014
Reported with an amendment, committed to the Committee of the Whole
House on the State of the Union, and ordered to be printed
[Strike out all after the enacting clause and insert the part printed
in italic]
[For text of introduced bill, see copy of bill as introduced on
February 13, 2013]
_______________________________________________________________________
A BILL
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.
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 ``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.''.
Union Calendar No. 417
113th CONGRESS
2d Session
H. R. 669
[Report No. 113-557]
_______________________________________________________________________
A BILL
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.
_______________________________________________________________________
July 24, 2014
Reported with an amendment, committed to the Committee of the Whole
House on the State of the Union, and ordered to be printed