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

<DOC>

                                                       Calendar No. 284
116th CONGRESS
  1st Session
                                S. 1130

    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 SENATE OF THE UNITED STATES

                             April 10, 2019

    Mr. Casey (for himself, Mr. Isakson, Mr. Brown, and Mr. Jones) 
introduced the following bill; which was read twice and referred to the 
          Committee on Health, Education, Labor, and Pensions

                            November 5, 2019

              Reported by Mr. Alexander, with an amendment
 [Strike out all after the enacting clause and insert the part printed 
                               in italic]

_______________________________________________________________________

                                 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,

<DELETED>SECTION 1. SHORT TITLE.</DELETED>

<DELETED>    This Act may be cited as the ``Scarlett's Sunshine on 
Sudden Unexpected Death Act''.</DELETED>

<DELETED>SEC. 2. AMENDMENT TO THE PUBLIC HEALTH SERVICE ACT.</DELETED>

<DELETED>    Title III of the Public Health Service Act (42 U.S.C. 241 
et seq.) is amended by adding at the end the following:</DELETED>

<DELETED>``PART W--SUDDEN UNEXPECTED INFANT DEATH AND SUDDEN UNEXPECTED 
                      DEATH IN CHILDHOOD</DELETED>

<DELETED>``SEC. 399OO. DEFINITIONS.</DELETED>

<DELETED>    ``In this part:</DELETED>
        <DELETED>    ``(1) Administrator.--The term `Administrator' 
        means the Administrator of the Health Resources and Services 
        Administration.</DELETED>
        <DELETED>    ``(2) Death scene investigator.--The term `death 
        scene investigator' means an individual certified or trained as 
        a death scene investigator by an accredited professional 
        certification board.</DELETED>
        <DELETED>    ``(3) Director.--The term `Director' means the 
        Director of the Centers for Disease Control and 
        Prevention.</DELETED>
        <DELETED>    ``(4) State.--The term `State' has the meaning 
        given to such term in section 2, except that such term includes 
        Indian tribes and tribal organizations (as such terms are 
        defined in section 4 of the Indian Self-Determination and 
        Education Assistance Act).</DELETED>
        <DELETED>    ``(5) Sudden unexpected infant death; suid.--The 
        terms `sudden unexpected infant death' and `SUID' mean the 
        sudden death of an infant under 1 year of age that when first 
        discovered did not have an obvious cause. Such terms include 
        those deaths that are later determined to be from explained as 
        well as unexplained causes.</DELETED>
        <DELETED>    ``(6) Sudden unexpected death in childhood.--The 
        term `sudden unexpected death in childhood' means the sudden 
        death of a child who is 1 year of age or older that, when first 
        discovered, did not have an obvious cause. Such term includes 
        those deaths that are later determined to be from an explained 
        cause, and those deaths that remain unexplained after a 
        thorough case investigation that includes a review of the 
        clinical history and circumstances of death and performance of 
        a comprehensive, standardized autopsy with appropriate 
        ancillary testing (which are known as `sudden unexplained death 
        in childhood').</DELETED>

<DELETED>``SEC. 399OO-1. DEATH SCENE INVESTIGATION AND 
              AUTOPSY.</DELETED>

<DELETED>    ``(a) Investigations.--</DELETED>
        <DELETED>    ``(1) Reporting.--The Secretary, acting through 
        the Director, in consultation with experts that include board-
        certified forensic pathologists, medical examiners, coroners, 
        pediatric pathologists, pediatric cardiologists, pediatric 
        neuropathologists and geneticists, and other individuals and 
        groups as the Director determines appropriate, shall revise the 
        Sudden Unexplained Infant Death Investigation Reporting Form of 
        the Centers for Disease Control and Prevention to include doll 
        re-enactments and scene investigation information on sleep-
        related deaths of children younger than 5, and work to align 
        such form with the National Fatality Review Case Reporting 
        System.</DELETED>
        <DELETED>    ``(2) Grants.--The Secretary, acting through the 
        Director, shall award grants to States to enable such States to 
        improve the completion of comprehensive death scene 
        investigations, and reviews of such investigations, for sudden 
        unexpected infant death and sudden unexpected death in 
        childhood.</DELETED>
        <DELETED>    ``(3) Application.--To be eligible to receive a 
        grant under paragraph (2), a State shall submit to the 
        Secretary an application at such time, in such manner, and 
        containing such information as the Secretary may 
        require.</DELETED>
        <DELETED>    ``(4) Use of funds.--</DELETED>
                <DELETED>    ``(A) In general.--A State shall use 
                amounts received under a grant under paragraph (2) to 
                improve the completion of comprehensive death scene 
                investigations for sudden unexpected infant death and 
                sudden unexpected death in childhood, including through 
                the awarding of subgrants to local jurisdictions (which 
                may include subgrants to medical examiners, coroners, 
                and other local entities responsible for conducting 
                autopsies) to be used to implement standard death scene 
                investigation protocols for sudden unexpected infant 
                death and sudden unexpected death in childhood and 
                conduct comprehensive, standardized 
                autopsies.</DELETED>
                <DELETED>    ``(B) Protocols.--A standard death scene 
                protocol implemented under subparagraph (A) shall 
                include the obtaining of information on--</DELETED>
                        <DELETED>    ``(i) current and past medical 
                        history of the infant or child and, as 
                        relevant, the infant's or child's 
                        family;</DELETED>
                        <DELETED>    ``(ii) the circumstances 
                        surrounding the death, including any suspicious 
                        circumstances, whether there were any 
                        accidental or environmental factors associated 
                        with the death; and</DELETED>
                        <DELETED>    ``(iii) in the case of a sleep-
                        related death, the sleep position and sleep 
                        environment of the infant or child.</DELETED>
<DELETED>    ``(b) Autopsies.--</DELETED>
        <DELETED>    ``(1) In general.--The Secretary, acting through 
        the Director, shall award grants to States and local 
        governmental entities to enable such States and entities to 
        increase the rate at which comprehensive, standardized 
        autopsies are performed for sudden unexpected infant death and 
        sudden unexpected death in childhood.</DELETED>
        <DELETED>    ``(2) Informed consent.--Grants awarded under this 
        subsection may be used for studies and demonstration projects 
        to increase the rate of consent among families of deceased 
        children for the inclusion of genetic or tissue samples 
        collected during autopsy in registries established for the 
        purposes of conducting research into sudden unexpected infant 
        deaths and sudden unexpected death in childhood.</DELETED>
        <DELETED>    ``(3) Application.--To be eligible to receive a 
        grant under paragraph (1), an eligible entity described in such 
        paragraph shall submit to the Secretary an application that 
        includes--</DELETED>
                <DELETED>    ``(A) a description of the methods to be 
                studied or tested to increase the rate of consent among 
                families of deceased children for the inclusion of 
                genetic or tissue samples collected during 
                autopsy;</DELETED>
                <DELETED>    ``(B) information about the governmental 
                and nongovernmental entities with whom the eligible 
                entity will partner; and</DELETED>
                <DELETED>    ``(C) any additional information as the 
                Secretary may require.</DELETED>
        <DELETED>    ``(4) Comprehensive autopsy.--For purposes of this 
        subsection, a comprehensive, standardized autopsy includes, as 
        appropriate, a full external and internal examination, 
        including microscopic examination, of all major organs and 
        tissues including the brain, complete radiographs, vitreous 
        fluid analysis, photo documentation, metabolic testing, 
        toxicology screening, and, when indicated, selected genetic and 
        microbiology analyses of the infant or child 
        involved.</DELETED>
<DELETED>    ``(c) Genetic Analysis.--The Director, in consultation 
with medical examiners, coroners, forensic pathologists, geneticists, 
researchers, public health officials, and other individuals and groups 
as the Director determines appropriate, shall develop recommendations 
for a standard protocol for use in determining when to utilize genetic 
analysis, and standard protocols for the collection and storage of 
specimens suitable for genetic analysis.</DELETED>
<DELETED>    ``(d) Authorization of Appropriations.--To carry out this 
section, there is authorized to be appropriated $8,000,000 for each of 
fiscal years 2019 through 2023.</DELETED>

<DELETED>``SEC. 399OO-2. TRAINING.</DELETED>

<DELETED>    ``(a) Grants.--The Secretary, acting through the Director, 
shall award grants to eligible entities for the provision of training 
on death scene investigation specific for sudden unexpected infant 
death and sudden unexpected death in childhood.</DELETED>
<DELETED>    ``(b) Eligible Entities.--To be eligible to receive a 
grant under subsection (a), an entity shall--</DELETED>
        <DELETED>    ``(1) be--</DELETED>
                <DELETED>    ``(A) a State or local government entity; 
                or</DELETED>
                <DELETED>    ``(B) a nonprofit private 
                entity;</DELETED>
        <DELETED>    ``(2) submit to the Secretary an application at 
        such time, in such manner, and containing such information as 
        the Secretary may require; and</DELETED>
        <DELETED>    ``(3) make publishing training materials developed 
        using a grant awarded under subsection (a) available on an 
        internet website and at no charge to attendees of training 
        under subsection (c)(1).</DELETED>
<DELETED>    ``(c) Use of Funds.--An eligible entity shall use amounts 
received under a grant under this section to--</DELETED>
        <DELETED>    ``(1) provide training to medical examiners, 
        coroners, death scene investigators, law enforcement personnel, 
        justices of the peace, emergency medical technicians, 
        paramedics, or emergency department personnel concerning death 
        scene investigations for sudden unexpected infant death and 
        sudden unexpected death in childhood, including the use of 
        standard death scene investigation protocols that include 
        information on--</DELETED>
                <DELETED>    ``(A) current and past medical history of 
                the infant or child and, as relevant, the infant's or 
                child's family;</DELETED>
                <DELETED>    ``(B) the circumstances surrounding the 
                death, including any suspicious 
                circumstances;</DELETED>
                <DELETED>    ``(C) whether there were any accidental or 
                environmental factors associated with the death; 
                and</DELETED>
                <DELETED>    ``(D) in the case of a sleep-related 
                death, the sleep position and sleep environment of the 
                infant or child;</DELETED>
        <DELETED>    ``(2) provide training directly to individuals who 
        are responsible for conducting and reviewing death scene 
        investigations for sudden unexpected infant death and sudden 
        unexpected death in childhood;</DELETED>
        <DELETED>    ``(3) provide training to multidisciplinary teams, 
        including teams that have a medical examiner or coroner, death 
        scene investigator, law enforcement representative, and an 
        emergency medical technician or paramedic;</DELETED>
        <DELETED>    ``(4) in the case of national and State-based 
        grantees that are comprised of medical examiners, coroners, 
        death scene investigators, law enforcement personnel, or 
        emergency medical technicians and paramedics, integrate 
        training under the grant on death scene investigation of sudden 
        unexpected infant death and sudden unexpected death in 
        childhood into professional accreditation and training 
        programs; or</DELETED>
        <DELETED>    ``(5) in the case of State and local government 
        entity grantees, obtain equipment, including scene 
        investigation kits, to aid in the completion of standard death 
        scene investigation.</DELETED>
<DELETED>    ``(d) Authorization of Appropriations.--To carry out this 
section, there is authorized to be appropriated $2,000,000 for each of 
fiscal years 2019 through 2023.</DELETED>

<DELETED>``SEC. 399OO-3. INFANT AND CHILD DEATH REVIEW.</DELETED>

<DELETED>    ``(a) Prevention.--</DELETED>
        <DELETED>    ``(1) Core capacity grants.--The Secretary, acting 
        through the Administrator and in consultation with the 
        Associate Commissioner of the Children's Bureau of the 
        Administration for Children and Families, shall award grants to 
        States to build and strengthen State capacity, and enable 
        States to support local governments' capacity, so as to review 
        100 percent of all infant and child deaths, and to develop and 
        implement prevention strategies, as appropriate.</DELETED>
        <DELETED>    ``(2) Planning grants.--The Secretary, acting 
        through the Administrator, shall award planning grants to 
        States in which the only infant and child death review programs 
        are statewide, for the development of local infant and child 
        death review programs and prevention strategies.</DELETED>
        <DELETED>    ``(3) Application.--To be eligible to receive a 
        grant under paragraph (1) or (2), a State shall submit to the 
        Secretary an application at such time, in such manner, and 
        containing such information as the Secretary may 
        require.</DELETED>
        <DELETED>    ``(4) Technical assistance.--The Secretary, acting 
        through the Administrator, shall provide technical assistance 
        to assist States--</DELETED>
                <DELETED>    ``(A) in developing the capacity for 
                comprehensive infant and child death review programs, 
                including the development of best practices for the 
                implementation of such programs; and</DELETED>
                <DELETED>    ``(B) in maintaining the National Fatality 
                Review Case Reporting System.</DELETED>
<DELETED>    ``(b) Authorization of Appropriations.--To carry out this 
section, there is authorized to be appropriated $15,000,000 for each of 
fiscal years 2019 through 2023.</DELETED>

<DELETED>``SEC. 399OO-4. ENHANCING THE NATIONAL FATALITY REVIEW CASE 
              REPORTING SYSTEM.</DELETED>

<DELETED>    ``(a) In General.--The Secretary, acting through the 
Director and in consultation with the National Fatality Review Case 
Reporting System, national health organizations, and professional 
societies with experience and expertise relating to reducing sudden 
unexpected infant death and sudden unexpected death in childhood, shall 
maintain current efforts of the National Fatality Review Case Reporting 
System so as to provide population-based data on unexpected deaths 
occurring for infants or children under age 18, in order to facilitate 
the understanding of the root causes, rates, trends, and geographic 
variations of sudden unexpected infant death and sudden unexpected 
death in childhood.</DELETED>
<DELETED>    ``(b) Compilation and Availability of Data.--The Secretary 
shall--</DELETED>
        <DELETED>    ``(1) compile the data submitted under this 
        section;</DELETED>
        <DELETED>    ``(2) make summary data available to the public in 
        a timely manner on an appropriate internet website in a format 
        that is useful to the public; and</DELETED>
        <DELETED>    ``(3) make data submitted under this section 
        available, in a manner that protects the privacy of individuals 
        involved, to individuals or entities conducting research into 
        the causes of, or prevention methods for, sudden unexpected 
        infant death and sudden unexpected death in 
        childhood.</DELETED>
<DELETED>    ``(c) Authorization of Appropriations.--To carry out this 
section, there is authorized to be appropriated $1,000,000 for each of 
fiscal years 2019 through 2023.</DELETED>

<DELETED>``SEC. 399OO-5. GRANTS TO SUPPORT INFANT SAFE SLEEP.</DELETED>

<DELETED>    ``(a) In General.--The Secretary, acting through the 
Administrator, shall award grants to national organizations, community-
based organizations, municipal public safety departments, and nonprofit 
organizations for the provision of evidence-based approaches for 
educational programs, and outreach activities focused on decreasing the 
risk factors that contribute to sleep-related SUID.</DELETED>
<DELETED>    ``(b) Application.--To be eligible to receive a grant 
under subsection (a), an entity shall submit to the Secretary an 
application at such time, in such manner, and containing such 
information as the Secretary may require.</DELETED>
<DELETED>    ``(c) Use of Funds.--Amounts received under a grant 
awarded under subsection (a) may be used to--</DELETED>
        <DELETED>    ``(1) provide outreach and education services 
        directly to parents and families, which--</DELETED>
                <DELETED>    ``(A) may include home visits, 24-hour 
                hotlines, internet-based educational materials, mobile 
                health technologies, and social marketing 
                campaigns;</DELETED>
                <DELETED>    ``(B) shall apply current safe sleep 
                guidelines published by a professional pediatric 
                organization; and</DELETED>
                <DELETED>    ``(C) may provide safe sleep-related 
                products to families at no cost or at reduced cost that 
                have published, peer-reviewed evidence to support safer 
                sleep environments for infants through age one; 
                or</DELETED>
        <DELETED>    ``(2) build capacity in professionals working with 
        families to support safe sleep.</DELETED>
<DELETED>    ``(d) Safe-Sleep Products.--Any product related to safe 
sleep for an infant that is provided under subsection (c)(1)(C) shall--
</DELETED>
        <DELETED>    ``(1) be in compliance with current safe sleep 
        guidelines published by a professional pediatric 
        organization;</DELETED>
        <DELETED>    ``(2) be intended for use by the infant through 
        age one; and</DELETED>
        <DELETED>    ``(3) be covered by, and be in compliance with, a 
        regulation or mandatory standard promulgated by the Consumer 
        Product Safety Commission.</DELETED>
<DELETED>    ``(e) Preference.--In awarding grants under subsection 
(a), the Secretary shall give preference to applicants that have a 
proven history of developing or delivering interventions for infants 
and families to support safe sleep, include plans to report evidence of 
program outcomes, and can demonstrate experience through collaborations 
and partnerships for delivering services throughout a State or 
region.</DELETED>
<DELETED>    ``(f) Set-Aside.--Not more than 5 percent of the amount of 
funds appropriated to carry out this section may be used to conduct 
research into the behavioral risks that lead to unsafe sleep practices 
and ways to mitigate those risks.</DELETED>
<DELETED>    ``(g) Authorization of Appropriations.--To carry out this 
section, there is authorized to be appropriated $5,000,000 for fiscal 
year 2019 and $7,000,000 for each of fiscal years 2020 through 
2023.''.</DELETED>

<DELETED>SEC. 3. SENSE OF CONGRESS.</DELETED>

<DELETED>    It is the sense of Congress that additional research is 
needed to improve the understanding of the epidemiology of sudden 
unexpected infant and childhood deaths that remain unexplained 
following a comprehensive, standardized autopsy and appropriate 
ancillary testing.</DELETED>

<DELETED>SEC. 4. REPORT TO CONGRESS.</DELETED>

<DELETED>    Not later than 1 year after the date of enactment of this 
Act, and biennially thereafter, the Secretary of Health and Human 
Services, acting through the Director of the Centers for Disease 
Control and Prevention and in consultation with the Director of the 
National Institutes of Health and the Administrator of the Health 
Resources and Services Administration, 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 preceding reporting period--</DELETED>
        <DELETED>    (1) information regarding the absolute number and 
        incidence of sudden unexpected infant death, the absolute 
        number and incidence of sudden unexpected death in childhood, 
        information about the number of such infant and child deaths 
        that remain unexplained, information about such conditions by 
        racial and ethnic groups, information about such conditions by 
        State, aggregate information obtained from death scene 
        investigations and autopsies, and recommendations for reducing 
        the incidence of sudden unexpected infant death and sudden 
        unexpected death in childhood;</DELETED>
        <DELETED>    (2) an assessment of the extent to which various 
        approaches of preventing sudden unexpected infant death and 
        sudden unexpected death in childhood have been 
        effective;</DELETED>
        <DELETED>    (3) a description of the activities carried out 
        under part W of title III of the Public Health Service Act (as 
        added by section 2); and</DELETED>
        <DELETED>    (4) any recommendations of the Secretary regarding 
        such part W.</DELETED>

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; 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 are authorized to be appropriated such sums as 
may be necessary for each of fiscal years 2020 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 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).
                                                       Calendar No. 284

116th CONGRESS

  1st Session

                                S. 1130

_______________________________________________________________________

                                 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.

_______________________________________________________________________

                            November 5, 2019

                       Reported with an amendment
```