[Congressional Bills 116th Congress]
[From the U.S. Government Publishing Office]
[H.R. 2271 Reported in House (RH)]

<DOC>





                                                 Union Calendar No. 424
116th CONGRESS
  2d Session
                                H. R. 2271

                          [Report No. 116-524]

    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.


_______________________________________________________________________


                    IN THE HOUSE OF REPRESENTATIVES

                             April 10, 2019

Ms. Moore (for herself, Mr. Cole, Ms. Herrera Beutler, Mr. Gottheimer, 
   Ms. Clarke of New York, Mrs. Rodgers of Washington, Ms. Wasserman 
 Schultz, Mr. Grijalva, Mr. Khanna, Ms. Norton, Mr. King of New York, 
Ms. McCollum, Mr. Cartwright, and Ms. DelBene) introduced the following 
    bill; which was referred to the Committee on Energy and Commerce

                           September 21, 2020

Additional sponsors: Mr. Ryan, Ms. Sewell of Alabama, Mr. Fitzpatrick, 
Ms. DeLauro, Mr. Heck, Mr. Wittman, Mrs. Watson Coleman, Ms. Fudge, Mr. 
Neguse, Mr. Lawson of Florida, Mr. Payne, Mr. Thompson of Mississippi, 
   Mr. Richmond, Mr. Cleaver, Mr. Clyburn, Mr. Green of Texas, Mrs. 
Demings, Ms. Pressley, Ms. Kelly of Illinois, Ms. Johnson of Texas, Ms. 
 Bass, Ms. Wilson of Florida, Mr. Evans, Mr. Johnson of Georgia, Mrs. 
   Lawrence, Ms. Jackson Lee, Mr. Meeks, Mr. Kind, Mr. Hastings, Ms. 
 Roybal-Allard, Mr. Danny K. Davis of Illinois, Mr. Raskin, Ms. Blunt 
Rochester, Mr. Kennedy, Mr. Case, Mr. Cohen, Mr. Harder of California, 
  Mr. Lipinski, Mr. Garcia of Illinois, Mr. McGovern, Mr. Lynch, Mr. 
   Peterson, Ms. Pingree, Mr. Michael F. Doyle of Pennsylvania, Ms. 
Schrier, Ms. Sherrill, Ms. Spanberger, Mr. Cooper, Mr. Rush, Ms. Craig, 
  Mr. Upton, Mr. Guthrie, Ms. Kuster of New Hampshire, Mrs. Axne, Mr. 
Swalwell of California, Mr. Young, Mr. Cox of California, Mr. Soto, Mr. 
                       Connolly, and Mr. Burgess

                           September 21, 2020

  Reported with an amendment, committed to the Committee of the Whole 
       House on the State of the Union, and ordered to be printed
 [Strike out all after the enacting clause and insert the part printed 
                               in italic]
 [For text of introduced bill, see copy of bill as introduced on April 
                               10, 2019]

_______________________________________________________________________

                                 A BILL


 
    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. ADDRESSING SUDDEN UNEXPECTED INFANT DEATH AND SUDDEN UNEXPECTED 
              DEATH IN CHILDHOOD.

    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 systems; or
                    ``(B) improve the utility of such 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 
                        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 
                fatality case reporting systems 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; 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 activities funded through the grant or cooperative 
agreement.
    ``(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) Support Services.--
            ``(1) In general.--The Secretary, acting through the 
        Administrator, shall award grants to national organizations, 
        State and local health departments, community-based 
        organizations, and nonprofit organizations for the provision of 
        support services to families who have had a child die of sudden 
        unexpected infant death or sudden unexpected death in 
        childhood.
            ``(2) Application.--To be eligible to receive a grant under 
        subsection (1), an entity shall submit to the Secretary an 
        application at such time, in such manner, and containing such 
        information as the Secretary may require.
            ``(3) Use of funds.--Amounts received under a grant awarded 
        under paragraph (1) may be used--
                    ``(A) to provide grief counseling, education, home 
                visits, 24-hour hotlines, or information, resources, 
                and referrals;
                    ``(B) to ensure access to grief and bereavement 
                services;
                    ``(C) to build capacity in professionals working 
                with families who experience a sudden death; or
                    ``(D) to support peer-to-peer groups for families 
                who have lost a child to sudden unexpected infant death 
                or sudden unexpected death in childhood.
            ``(4) Preference.--In awarding grants under paragraph (1), 
        the Secretary shall give preference to applicants that--
                    ``(A) have a proven history of effective direct 
                support services and interventions for sudden 
                unexpected infant death and sudden unexplained death in 
                childhood; and
                    ``(B) demonstrate experience through collaborations 
                and partnerships for delivering services described in 
                paragraph (3).
    ``(f) Definitions.--In this section:
            ``(1) Sudden unexpected infant death.--The term `sudden 
        unexpected infant death'--
                    ``(A) means the sudden death of an infant under 1 
                year of age that when first discovered did not have an 
                obvious cause; and
                    ``(B) includes--
                            ``(i) such deaths that are explained; and
                            ``(ii) such deaths that remain unexplained 
                        (which are known as sudden infant death 
                        syndrome).
            ``(2) Sudden unexpected death in childhood.--The term 
        `sudden unexpected death in childhood'--
                    ``(A) 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; and
                    ``(B) includes--
                            ``(i) such deaths that are explained; and
                            ``(ii) such deaths that remain unexplained 
                        (which are known as sudden unexplained death in 
                        childhood).
            ``(3) 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.
    ``(g) Authorization of Appropriations.--For the purpose of carrying 
out this section, there is authorized to be appropriated $33,000,000 
for each of fiscal years 2021 through 2024.''.

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 Energy and Commerce of 
the House of Representatives and the Committee on Health, Education, 
Labor, and Pensions of the Senate a report that contains, with respect 
to the reporting period--
            (1) information regarding the incidence and number of 
        sudden unexpected infant deaths and sudden unexpected deaths 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).
                                                 Union Calendar No. 424

116th CONGRESS

  2d Session

                               H. R. 2271

                          [Report No. 116-524]

_______________________________________________________________________

                                 A BILL

    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.

_______________________________________________________________________

                           September 21, 2020

  Reported with an amendment, committed to the Committee of the Whole 
       House on the State of the Union, and ordered to be printed