    [United States Statutes at Large, Volume 134, 116th Congress, 2nd Session]
    [From the U.S. Government Publishing Office, www.gpo.gov]

    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. <>

    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.

    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. <>  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) <>  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) <>  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.--

    [[Page 3354]]

    ``(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) <>  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. <>  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) <>  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) <>  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 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):
    ---------------------------------------------------------------------------

    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.