[Congressional Bills 116th Congress]
[From the U.S. Government Publishing Office]
[S. 1130 Engrossed in Senate (ES)]

<DOC>
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
116th CONGRESS
  2d Session
                                S. 1130

_______________________________________________________________________

                                 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; or
                    ``(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.
    ``(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 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 2021 through 2025.''.

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).

            Passed the Senate May 20, 2020.

            Attest:

                                                             Secretary.
116th CONGRESS

  2d Session

                                S. 1130

_______________________________________________________________________

                                 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.