[Congressional Bills 116th Congress]
[From the U.S. Government Publishing Office]
[S. 1130 Introduced in Senate (IS)]
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116th CONGRESS
1st Session
S. 1130
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 SENATE OF THE UNITED STATES
April 10, 2019
Mr. Casey (for himself, Mr. Isakson, Mr. Brown, and Mr. Jones)
introduced the following bill; which was read twice and referred to the
Committee on Health, Education, Labor, and Pensions
_______________________________________________________________________
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 ``Scarlett's Sunshine on Sudden
Unexpected Death Act''.
SEC. 2. AMENDMENT TO THE PUBLIC HEALTH SERVICE ACT.
Title III of the Public Health Service Act (42 U.S.C. 241 et seq.)
is amended by adding at the end the following:
``PART W--SUDDEN UNEXPECTED INFANT DEATH AND SUDDEN UNEXPECTED DEATH IN
CHILDHOOD
``SEC. 399OO. DEFINITIONS.
``In this part:
``(1) Administrator.--The term `Administrator' means the
Administrator of the Health Resources and Services
Administration.
``(2) Death scene investigator.--The term `death scene
investigator' means an individual certified or trained as a
death scene investigator by an accredited professional
certification board.
``(3) Director.--The term `Director' means the Director of
the Centers for Disease Control and Prevention.
``(4) State.--The term `State' has the meaning given to
such term in section 2, except that such term includes Indian
tribes and tribal organizations (as such terms are defined in
section 4 of the Indian Self-Determination and Education
Assistance Act).
``(5) Sudden unexpected infant death; suid.--The terms
`sudden unexpected infant death' and `SUID' mean the sudden
death of an infant under 1 year of age that when first
discovered did not have an obvious cause. Such terms include
those deaths that are later determined to be from explained as
well as unexplained causes.
``(6) Sudden unexpected death in childhood.--The term
`sudden unexpected death in childhood' means the sudden death
of a child who is 1 year of age or older that, when first
discovered, did not have an obvious cause. Such term includes
those deaths that are later determined to be from an explained
cause, and those deaths that remain unexplained after a
thorough case investigation that includes a review of the
clinical history and circumstances of death and performance of
a comprehensive, standardized autopsy with appropriate
ancillary testing (which are known as `sudden unexplained death
in childhood').
``SEC. 399OO-1. DEATH SCENE INVESTIGATION AND AUTOPSY.
``(a) Investigations.--
``(1) Reporting.--The Secretary, acting through the
Director, in consultation with experts that include board-
certified forensic pathologists, medical examiners, coroners,
pediatric pathologists, pediatric cardiologists, pediatric
neuropathologists and geneticists, and other individuals and
groups as the Director determines appropriate, shall revise the
Sudden Unexplained Infant Death Investigation Reporting Form of
the Centers for Disease Control and Prevention to include doll
re-enactments and scene investigation information on sleep-
related deaths of children younger than 5, and work to align
such form with the National Fatality Review Case Reporting
System.
``(2) Grants.--The Secretary, acting through the Director,
shall award grants to States to enable such States to improve
the completion of comprehensive death scene investigations, and
reviews of such investigations, for sudden unexpected infant
death and sudden unexpected death in childhood.
``(3) Application.--To be eligible to receive a grant under
paragraph (2), a State shall submit to the Secretary an
application at such time, in such manner, and containing such
information as the Secretary may require.
``(4) Use of funds.--
``(A) In general.--A State shall use amounts
received under a grant under paragraph (2) to improve
the completion of comprehensive death scene
investigations for sudden unexpected infant death and
sudden unexpected death in childhood, including through
the awarding of subgrants to local jurisdictions (which
may include subgrants to medical examiners, coroners,
and other local entities responsible for conducting
autopsies) to be used to implement standard death scene
investigation protocols for sudden unexpected infant
death and sudden unexpected death in childhood and
conduct comprehensive, standardized autopsies.
``(B) Protocols.--A standard death scene protocol
implemented under subparagraph (A) shall include the
obtaining of information on--
``(i) current and past medical history of
the infant or child and, as relevant, the
infant's or child's family;
``(ii) the circumstances surrounding the
death, including any suspicious circumstances,
whether there were any accidental or
environmental factors associated with the
death; and
``(iii) in the case of a sleep-related
death, the sleep position and sleep environment
of the infant or child.
``(b) Autopsies.--
``(1) In general.--The Secretary, acting through the
Director, shall award grants to States and local governmental
entities to enable such States and entities to increase the
rate at which comprehensive, standardized autopsies are
performed for sudden unexpected infant death and sudden
unexpected death in childhood.
``(2) Informed consent.--Grants awarded under this
subsection may be used for studies and demonstration projects
to increase the rate of consent among families of deceased
children for the inclusion of genetic or tissue samples
collected during autopsy in registries established for the
purposes of conducting research into sudden unexpected infant
deaths and sudden unexpected death in childhood.
``(3) Application.--To be eligible to receive a grant under
paragraph (1), an eligible entity described in such paragraph
shall submit to the Secretary an application that includes--
``(A) a description of the methods to be studied or
tested to increase the rate of consent among families
of deceased children for the inclusion of genetic or
tissue samples collected during autopsy;
``(B) information about the governmental and
nongovernmental entities with whom the eligible entity
will partner; and
``(C) any additional information as the Secretary
may require.
``(4) Comprehensive autopsy.--For purposes of this
subsection, a comprehensive, standardized autopsy includes, as
appropriate, a full external and internal examination,
including microscopic examination, of all major organs and
tissues including the brain, complete radiographs, vitreous
fluid analysis, photo documentation, metabolic testing,
toxicology screening, and, when indicated, selected genetic and
microbiology analyses of the infant or child involved.
``(c) Genetic Analysis.--The Director, in consultation with medical
examiners, coroners, forensic pathologists, geneticists, researchers,
public health officials, and other individuals and groups as the
Director determines appropriate, shall develop recommendations for a
standard protocol for use in determining when to utilize genetic
analysis, and standard protocols for the collection and storage of
specimens suitable for genetic analysis.
``(d) Authorization of Appropriations.--To carry out this section,
there is authorized to be appropriated $8,000,000 for each of fiscal
years 2019 through 2023.
``SEC. 399OO-2. TRAINING.
``(a) Grants.--The Secretary, acting through the Director, shall
award grants to eligible entities for the provision of training on
death scene investigation specific for sudden unexpected infant death
and sudden unexpected death in childhood.
``(b) Eligible Entities.--To be eligible to receive a grant under
subsection (a), an entity shall--
``(1) be--
``(A) a State or local government entity; or
``(B) a nonprofit private entity;
``(2) submit to the Secretary an application at such time,
in such manner, and containing such information as the
Secretary may require; and
``(3) make publishing training materials developed using a
grant awarded under subsection (a) available on an internet
website and at no charge to attendees of training under
subsection (c)(1).
``(c) Use of Funds.--An eligible entity shall use amounts received
under a grant under this section to--
``(1) provide training to medical examiners, coroners,
death scene investigators, law enforcement personnel, justices
of the peace, emergency medical technicians, paramedics, or
emergency department personnel concerning death scene
investigations for sudden unexpected infant death and sudden
unexpected death in childhood, including the use of standard
death scene investigation protocols that include information
on--
``(A) current and past medical history of the
infant or child and, as relevant, the infant's or
child's family;
``(B) the circumstances surrounding the death,
including any suspicious circumstances;
``(C) whether there were any accidental or
environmental factors associated with the death; and
``(D) in the case of a sleep-related death, the
sleep position and sleep environment of the infant or
child;
``(2) provide training directly to individuals who are
responsible for conducting and reviewing death scene
investigations for sudden unexpected infant death and sudden
unexpected death in childhood;
``(3) provide training to multidisciplinary teams,
including teams that have a medical examiner or coroner, death
scene investigator, law enforcement representative, and an
emergency medical technician or paramedic;
``(4) in the case of national and State-based grantees that
are comprised of medical examiners, coroners, death scene
investigators, law enforcement personnel, or emergency medical
technicians and paramedics, integrate training under the grant
on death scene investigation of sudden unexpected infant death
and sudden unexpected death in childhood into professional
accreditation and training programs; or
``(5) in the case of State and local government entity
grantees, obtain equipment, including scene investigation kits,
to aid in the completion of standard death scene investigation.
``(d) Authorization of Appropriations.--To carry out this section,
there is authorized to be appropriated $2,000,000 for each of fiscal
years 2019 through 2023.
``SEC. 399OO-3. INFANT AND CHILD DEATH REVIEW.
``(a) Prevention.--
``(1) Core capacity grants.--The Secretary, acting through
the Administrator and in consultation with the Associate
Commissioner of the Children's Bureau of the Administration for
Children and Families, shall award grants to States to build
and strengthen State capacity, and enable States to support
local governments' capacity, so as to review 100 percent of all
infant and child deaths, and to develop and implement
prevention strategies, as appropriate.
``(2) Planning grants.--The Secretary, acting through the
Administrator, shall award planning grants to States in which
the only infant and child death review programs are statewide,
for the development of local infant and child death review
programs and prevention strategies.
``(3) Application.--To be eligible to receive a grant under
paragraph (1) or (2), a State shall submit to the Secretary an
application at such time, in such manner, and containing such
information as the Secretary may require.
``(4) Technical assistance.--The Secretary, acting through
the Administrator, shall provide technical assistance to assist
States--
``(A) in developing the capacity for comprehensive
infant and child death review programs, including the
development of best practices for the implementation of
such programs; and
``(B) in maintaining the National Fatality Review
Case Reporting System.
``(b) Authorization of Appropriations.--To carry out this section,
there is authorized to be appropriated $15,000,000 for each of fiscal
years 2019 through 2023.
``SEC. 399OO-4. ENHANCING THE NATIONAL FATALITY REVIEW CASE REPORTING
SYSTEM.
``(a) In General.--The Secretary, acting through the Director and
in consultation with the National Fatality Review Case Reporting
System, national health organizations, and professional societies with
experience and expertise relating to reducing sudden unexpected infant
death and sudden unexpected death in childhood, shall maintain current
efforts of the National Fatality Review Case Reporting System so as to
provide population-based data on unexpected deaths occurring for
infants or children under age 18, in order to facilitate the
understanding of the root causes, rates, trends, and geographic
variations of sudden unexpected infant death and sudden unexpected
death in childhood.
``(b) Compilation and Availability of Data.--The Secretary shall--
``(1) compile the data submitted under this section;
``(2) make summary data available to the public in a timely
manner on an appropriate internet website in a format that is
useful to the public; and
``(3) make data submitted under this section available, in
a manner that protects the privacy of individuals involved, to
individuals or entities conducting research into the causes of,
or prevention methods for, sudden unexpected infant death and
sudden unexpected death in childhood.
``(c) Authorization of Appropriations.--To carry out this section,
there is authorized to be appropriated $1,000,000 for each of fiscal
years 2019 through 2023.
``SEC. 399OO-5. GRANTS TO SUPPORT INFANT SAFE SLEEP.
``(a) In General.--The Secretary, acting through the Administrator,
shall award grants to national organizations, community-based
organizations, municipal public safety departments, and nonprofit
organizations for the provision of evidence-based approaches for
educational programs, and outreach activities focused on decreasing the
risk factors that contribute to sleep-related SUID.
``(b) Application.--To be eligible to receive a grant under
subsection (a), an entity shall submit to the Secretary an application
at such time, in such manner, and containing such information as the
Secretary may require.
``(c) Use of Funds.--Amounts received under a grant awarded under
subsection (a) may be used to--
``(1) provide outreach and education services directly to
parents and families, which--
``(A) may include home visits, 24-hour hotlines,
internet-based educational materials, mobile health
technologies, and social marketing campaigns;
``(B) shall apply current safe sleep guidelines
published by a professional pediatric organization; and
``(C) may provide safe sleep-related products to
families at no cost or at reduced cost that have
published, peer-reviewed evidence to support safer
sleep environments for infants through age one; or
``(2) build capacity in professionals working with families
to support safe sleep.
``(d) Safe-Sleep Products.--Any product related to safe sleep for
an infant that is provided under subsection (c)(1)(C) shall--
``(1) be in compliance with current safe sleep guidelines
published by a professional pediatric organization;
``(2) be intended for use by the infant through age one;
and
``(3) be covered by, and be in compliance with, a
regulation or mandatory standard promulgated by the Consumer
Product Safety Commission.
``(e) Preference.--In awarding grants under subsection (a), the
Secretary shall give preference to applicants that have a proven
history of developing or delivering interventions for infants and
families to support safe sleep, include plans to report evidence of
program outcomes, and can demonstrate experience through collaborations
and partnerships for delivering services throughout a State or region.
``(f) Set-Aside.--Not more than 5 percent of the amount of funds
appropriated to carry out this section may be used to conduct research
into the behavioral risks that lead to unsafe sleep practices and ways
to mitigate those risks.
``(g) Authorization of Appropriations.--To carry out this section,
there is authorized to be appropriated $5,000,000 for fiscal year 2019
and $7,000,000 for each of fiscal years 2020 through 2023.''.
SEC. 3. SENSE OF CONGRESS.
It is the sense of Congress that additional research is needed to
improve the understanding of the epidemiology of sudden unexpected
infant and childhood deaths that remain unexplained following a
comprehensive, standardized autopsy and appropriate ancillary testing.
SEC. 4. REPORT TO CONGRESS.
Not later than 1 year after the date of enactment of this Act, and
biennially thereafter, the Secretary of Health and Human Services,
acting through the Director of the Centers for Disease Control and
Prevention and in consultation with the Director of the National
Institutes of Health and the Administrator of the Health Resources and
Services Administration, shall submit to the Committee on Health,
Education, Labor, and Pensions of the Senate and the Committee on
Energy and Commerce of the House of Representatives a report that
contains, with respect to the preceding reporting period--
(1) information regarding the absolute number and incidence
of sudden unexpected infant death, the absolute number and
incidence of sudden unexpected death in childhood, information
about the number of such infant and child deaths that remain
unexplained, information about such conditions by racial and
ethnic groups, information about such conditions by State,
aggregate information obtained from death scene investigations
and autopsies, and recommendations for reducing the incidence
of sudden unexpected infant death and sudden unexpected death
in childhood;
(2) an assessment of the extent to which various approaches
of preventing sudden unexpected infant death and sudden
unexpected death in childhood have been effective;
(3) a description of the activities carried out under part
W of title III of the Public Health Service Act (as added by
section 2); and
(4) any recommendations of the Secretary regarding such
part W.
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