S. 1130 — Scarlett's Sunshine on Sudden Unexpected Death Act

[116th Congress Public Law 273]
[From the U.S. Government Publishing Office]



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           SCARLETT'S SUNSHINE ON SUDDEN UNEXPECTED DEATH ACT

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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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Scarlett's Sunshine on Sudden Unexpected Death Act

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