[Congressional Bills 116th Congress]
[From the U.S. Government Publishing Office]
[S. 1130 Enrolled Bill (ENR)]

        S.1130

                     One Hundred Sixteenth Congress

                                 of the

                        United States of America


                          AT THE SECOND SESSION

           Begun and held at the City of Washington on Friday,
            the third day of January, two thousand and twenty


                                 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, 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.--
        ``(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;
            (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).

                               Speaker of the House of Representatives.

                            Vice President of the United States and    
                                               President of the Senate.