[116th Congress Public Law 273]
[From the U.S. Government Publishing Office]
[[Page 3351]]
SCARLETT'S SUNSHINE ON SUDDEN UNEXPECTED DEATH ACT
[[Page 134 STAT. 3352]]
Public Law 116-273
116th Congress
An Act
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. <<NOTE: Dec. 31, 2020 - [S. 1130]>>
Be it enacted by the Senate and House of Representatives of the
United States of America in Congress assembled, <<NOTE: Scarlett's
Sunshine on Sudden Unexpected Death Act.>>
SECTION 1. <<NOTE: 42 USC 201 note.>> 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.
Part B of title XI of the Public Health Service Act (42 U.S.C. 241
et seq.) is amended--
(1) in the part heading, by striking ``sudden infant death
syndrome'' and inserting ``sudden unexpected infant death,
sudden infant death syndrome, and sudden unexpected death in
childhood''; and
(2) by inserting before section 1122 the following:
``SEC. 1121. <<NOTE: 42 USC 300c-11.>> ADDRESSING SUDDEN
UNEXPECTED INFANT DEATH AND SUDDEN
UNEXPECTED DEATH IN CHILDHOOD.
``(a) In General.--The Secretary may develop, support, or maintain
programs or activities to address sudden unexpected infant death and
sudden unexpected death in childhood, including by--
``(1) continuing to support the Sudden Unexpected Infant
Death and Sudden Death in the Young Case Registry of the Centers
for Disease Control and Prevention and other fatality case
reporting systems that include data pertaining to sudden
unexpected infant death and sudden unexpected death in
childhood, as appropriate, including such systems supported by
the Health Resources and Services Administration, in order to--
``(A) increase the number of States and
jurisdictions participating in such registries or
systems; and
``(B) improve the utility of such registries or
systems, which may include--
``(i) making summary data available to the
public in a timely manner on the internet website
of the Department of Health and Human Services, in
a manner that, at a minimum, protects personal
privacy to the extent required by applicable
Federal and State law; and
``(ii) making the data submitted to such
registries or systems available to researchers, in
a manner that,
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at a minimum, protects personal privacy to the
extent required by applicable Federal and State
law; and
``(2) <<NOTE: Grants.>> awarding grants or cooperative
agreements to States, Indian Tribes, and Tribal organizations
for purposes of--
``(A) supporting fetal and infant mortality and
child death review programs for sudden unexpected infant
death and sudden unexpected death in childhood,
including by establishing such programs at the local
level;
``(B) improving data collection related to sudden
unexpected infant death and sudden unexpected death in
childhood, including by--
``(i) improving the completion of death scene
investigations and comprehensive autopsies that
include a review of clinical history and
circumstances of death with appropriate ancillary
testing; and
``(ii) training medical examiners, coroners,
death scene investigators, law enforcement
personnel, emergency medical technicians,
paramedics, emergency department personnel, and
others who perform death scene investigations with
respect to the deaths of infants and children, as
appropriate;
``(C) identifying, developing, and implementing best
practices to reduce or prevent sudden unexpected infant
death and sudden unexpected death in childhood,
including practices to reduce sleep-related infant
deaths;
``(D) increasing the voluntary inclusion, in
registries established for the purpose of conducting
research on sudden unexpected infant death and sudden
unexpected death in childhood, of samples of tissues or
genetic materials from autopsies that have been
collected pursuant to Federal or State law and for which
the parent or guardian has provided informed consent for
inclusion in such registries;
``(E) disseminating information and materials to
health care professionals and the public on risk factors
that contribute to sudden unexpected infant death and
sudden unexpected death in childhood, which may include
information on risk factors that contribute to sleep-
related sudden unexpected infant death or sudden
unexpected death in childhood; or
``(F) providing information, referrals, or peer or
follow-up support services to families who have
experienced sudden unexpected infant death or sudden
unexpected death in childhood.
``(b) <<NOTE: Coordination.>> Application.--To be eligible to
receive a grant or cooperative agreement under subsection (a)(2), a
State, Indian Tribe, or Tribal organization shall submit to the
Secretary an application at such time, in such manner, and containing
such information as the Secretary may require, including information on
how such State will ensure activities conducted under this section are
coordinated with other federally-funded programs to reduce infant and
child mortality, as appropriate.
``(c) Technical Assistance.--The Secretary shall provide technical
assistance to States, Tribes, and Tribal organizations receiving a grant
or cooperative agreement under subsection (a)(2) for purposes of
carrying out the program in accordance with this section.
``(d) Reporting Forms.--
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``(1) In general.--The Secretary shall, as appropriate,
encourage the use of sudden unexpected infant death and sudden
unexpected death in childhood reporting forms developed in
collaboration with the Centers for Disease Control and
Prevention to improve the quality of data submitted to the
Sudden Unexpected Infant Death and Sudden Death in the Young
Case Registry, and other fatality case reporting systems that
include data pertaining to sudden unexpected infant death and
sudden unexpected death in childhood.
``(2) <<NOTE: Assessment.>> Update of forms.--The Secretary
shall assess whether updates are needed to the sudden unexpected
infant death investigation reporting form used by the Centers
for Disease Control and Prevention in order to improve the use
of such form with other fatality case reporting systems
supported by the Department of Health and Human Services, and
shall make such updates as appropriate.
``(e) Definitions.--In this section:
``(1) Sudden infant death syndrome.--The term `sudden infant
death syndrome' means a sudden unexpected infant death that
remains unexplained after a thorough case investigation.
``(2) Sudden unexpected infant death.--The term `sudden
unexpected infant death' means the sudden death of an infant
under 1 year of age that when first discovered did not have an
obvious cause. Such term includes such deaths that are
explained, as well as deaths that remain unexplained (which are
known as sudden infant death syndrome).
``(3) Sudden unexpected death in childhood.--The term
`sudden unexpected death in childhood' means the sudden death of
a child who is at least 1 year of age but not more than 17 years
of age that, when first discovered, did not have an obvious
cause. Such term includes such deaths that are explained, as
well as deaths that remain unexplained (which are known as
sudden unexplained death in childhood).
``(4) Sudden unexplained death in childhood.--The term
`sudden unexplained death in childhood' means a sudden
unexpected death in childhood that remains unexplained after a
thorough case investigation.
``(f) Authorization of Appropriations.--For the purpose of carrying
out this section, there is authorized to be appropriated $12,000,000 for
each of fiscal years 2022 through 2026.''.
SEC. 3. <<NOTE: 42 USC 300c-14.>> REPORT TO CONGRESS.
(a) In General.--Not later than 2 years after the date of enactment
of this Act and biennially thereafter, the Secretary of Health and Human
Services 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
reporting period--
(1) information regarding the incidence and number of sudden
unexpected infant death and sudden unexpected death in childhood
(including the number of such infant and child deaths that
remain unexplained after investigation), including, to the
extent practicable--
(A) <<NOTE: Summary.>> a summary of such
information by racial and ethnic group, and by State;
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(B) aggregate information obtained from death scene
investigations and autopsies; and
(C) <<NOTE: Recommenda- tions.>> recommendations
for reducing the incidence of sudden unexpected infant
death and sudden unexpected death in childhood;
(2) <<NOTE: Assessment.>> an assessment of the extent to
which various approaches of reducing and preventing sudden
unexpected infant death and sudden unexpected death in childhood
have been effective; and
(3) a description of the activities carried out under
section 1121 of the Public Health Service Act (as added by
section 2).
(b) Definitions.--In this section, the terms ``sudden unexpected
infant death'' and ``sudden unexpected death in childhood'' have the
meanings given such terms in section 1121 of the Public Health Service
Act (as added by section 2).
Approved December 31, 2020.
LEGISLATIVE HISTORY--S. 1130 (H.R. 2271):
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HOUSE REPORTS: No. 116-524 (Comm. on Energy and Commerce) accompanying
H.R. 2271.
CONGRESSIONAL RECORD, Vol. 166 (2020):
May 20, considered and passed Senate.
Dec. 10, considered and passed House, amended.
Dec. 16, Senate concurred in House amendment.
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