Title: Scarlett's Sunshine on Sudden Unexpected Death Act
Policy area: Health

Summary:
Scarlett's Sunshine on Sudden Unexpected Death Act
This bill establishes several programs and requirements relating to sudden unexpected infant death (SUID) and sudden unexplained death in childhood (SUDC).
Among other things, the bill establishes grant programs to:
The Centers for Disease Control and Prevention must also study the use of genetic analysis and publish specified data regarding SUID and SUDC.

[Congressional Bills 115th Congress]
[From the U.S. Government Publishing Office]
[H.R. 6931 Introduced in House (IH)]

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115th CONGRESS
  2d Session
                                H. R. 6931

    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

                           September 27, 2018

 Ms. Moore (for herself, Mr. Cole, Ms. Herrera Beutler, Ms. Clarke of 
 New York, Ms. Norton, Mr. Payne, Mr. Ryan of Ohio, Mr. Grijalva, Ms. 
 Jackson Lee, Ms. DeLauro, Mr. Khanna, Mr. Brady of Pennsylvania, Mrs. 
  Watson Coleman, and Mr. King of New York) introduced the following 
    bill; which was referred to the Committee on Energy and Commerce

_______________________________________________________________________

                                 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. AMENDMENT TO THE PUBLIC HEALTH SERVICE ACT.

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

 ``PART W--SUDDEN UNEXPECTED INFANT DEATH AND SUDDEN UNEXPLAINED DEATH 
                              IN CHILDHOOD

``SEC. 399OO. DEFINITIONS.

    ``In this part:
            ``(1) Administrator.--The term `Administrator' means the 
        Administrator of the Health Resources and Services 
        Administration.
            ``(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.
            ``(3) Director.--The term `Director' means the Director of 
        the Centers for Disease Control and Prevention.
            ``(4) State.--The term `State' has the meaning given to 
        such term in section 2, except that such term includes tribes 
        and tribal organizations (as such terms are defined in section 
        4 of the Indian Self-Determination and Education Assistance 
        Act).
            ``(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.
            ``(6) Sudden unexplained death in childhood; sudc.--The 
        terms `sudden unexplained death in childhood' and `SUDC' mean 
        the sudden death of a child who is 1 year of age or older, 
        which remains unexplained after a thorough case investigation 
        that includes a review of the clinical history and 
        circumstances of death and performance of a complete autopsy 
        with appropriate ancillary testing.

``SEC. 399OO-1. DEATH SCENE INVESTIGATION AND AUTOPSY.

    ``(a) Investigations.--
            ``(1) Reporting.--The Secretary, acting through the 
        Director, in consultation with board-certified forensic 
        pathologists, medical examiners, coroners, pediatric 
        pathologists, pediatric cardiologists, pediatric 
        neuropathologists and geneticists, and other individuals and 
        groups as the Director determines necessary, shall revise the 
        Sudden Unexplained Infant Death Investigation Reporting Form of 
        the Centers for Disease Control and Prevention and the Child 
        Death Review Case Reporting System to include doll re-
        enactments and scene investigation information on deaths of 
        children through age 4.
            ``(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 unexplained death in childhood.
            ``(3) Application.--To be eligible to receive a grant under 
        paragraph (1), a State shall submit to the Secretary an 
        application at such time, in such manner, and containing such 
        information as the Secretary may require.
            ``(4) Use of funds.--
                    ``(A) In general.--A State shall use amounts 
                received under a grant under paragraph (1) to improve 
                the completion of comprehensive death scene 
                investigations for sudden unexpected infant death and 
                sudden unexplained death in childhood, including 
                through the awarding of subgrants to local 
                jurisdictions to be used to implement standard death 
                scene investigation protocols for sudden unexpected 
                infant death and sudden unexplained death in childhood 
                and conduct comprehensive, standardized autopsies.
                    ``(B) Protocols.--A standard death scene protocol 
                implemented under subparagraph (A) shall include the 
                obtaining of information on current and past medical 
                history of the infant or child; the circumstances 
                surrounding the death, including any suspicious 
                circumstances; whether there were any accidental or 
                environmental factors associated with the death; and in 
                the case of a sleep-related death, the sleep position 
                and sleep environment.
    ``(b) Autopsies.--
            ``(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 
        unexplained death in childhood.
            ``(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 SUID and SUDC.
            ``(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 at such time, in 
        such manner, and containing such information as the Secretary 
        may require.
            ``(4) Comprehensive autopsy.--For purposes of this 
        subsection, a comprehensive autopsy, which may include 
        minimally invasive techniques, shall include 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.
    ``(c) Study on 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 necessary, shall commission a study to 
determine the benefits and appropriateness of genetic analysis for 
infant and early childhood deaths that remain unexplained after a 
complete death scene investigation and comprehensive, standardized 
autopsy. Such study shall include recommendations on developing 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.
    ``(d) Authorization of Appropriations.--There is authorized to be 
appropriated $8,000,000 for each of fiscal years 2019 through 2023 to 
carry out this section.

``SEC. 399OO-2. TRAINING.

    ``(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 SUID and SUDC.
    ``(b) Eligible Entities.--To be eligible to receive a grant under 
subsection (a), an entity shall--
            ``(1) be--
                    ``(A) a State or local government entity; or
                    ``(B) a nonprofit private entity;
            ``(2) submit to the Secretary an application at such time, 
        in such manner, and containing such information as the 
        Secretary may require; and
            ``(3) make publishing training materials developed under 
        subsection (a) available on an Internet website and at no 
        charge to attendees of training under subsection (c)(1).
    ``(c) Use of Funds.--An eligible entity shall use amounts received 
under a grant under this section to--
            ``(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 SUID and SUDC, including the use of standard 
        death scene investigation protocols that include information on 
        the current and past medical history of the infant/child, the 
        circumstances surrounding the death including any suspicious 
        circumstances, the sleep position and sleep environment of the 
        infant/child, and whether there were any accidental or 
        environmental factors associated with the death;
            ``(2) provide training directly to individuals who are 
        responsible for conducting and reviewing death scene 
        investigations for sudden unexpected infant death and sudden 
        unexplained death in childhood;
            ``(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;
            ``(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 SUID and SUDC into professional 
        accreditation and training programs; or
            ``(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.
    ``(d) Authorization of Appropriations.--There is authorized to be 
appropriated to carry out this section $2,000,000 for each of fiscal 
years 2019 through 2023.

``SEC. 399OO-3. INFANT AND CHILD DEATH REVIEW.

    ``(a) Prevention.--
            ``(1) Core capacity grants.--The Secretary, acting through 
        the Administrator and in consultation with the Associate 
        Commissioner of the Children's Bureau, shall award grants to 
        States to build and strengthen State capacity so as to review 
        100 percent of all infant and child deaths, and to develop and 
        implement prevention strategies, as appropriate.
            ``(2) Planning grants.--The Secretary, acting through the 
        Administrator, shall award planning grants to States that have 
        no existing infant or child death review program or States in 
        which the only infant and child death review programs are 
        State-based, for the development of local infant and child 
        death review programs and prevention strategies.
            ``(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.
            ``(4) Technical assistance.--The Secretary, acting through 
        the Administrator, shall provide technical assistance to assist 
        States--
                    ``(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
                    ``(B) in maintaining the National Infant and Child 
                Death Case Reporting System.
    ``(b) Authorization of Appropriations.--There is authorized to be 
appropriated $15,000,000 for each of fiscal years 2019 through 2023 to 
carry out subsection (a).

``SEC. 399OO-4. ENHANCING THE NATIONAL INFANT AND CHILD DEATH CASE 
              REPORTING SYSTEM.

    ``(a) In General.--The Secretary, acting through the Director and 
in consultation with the National Infant and Child Death Case Reporting 
System, national health organizations, and professional societies with 
experience and expertise relating to reducing SUID and SUDC, shall 
maintain current efforts of the National Infant and Child Death Case 
Reporting System so as to provide population-based data on deaths 
occurring for children ages 0 through 4, in order to facilitate the 
understanding of the root causes, rates, trends, and geographic 
variations of SUID and SUDC with respect to such ages.
    ``(b) Compilation and Availability of Data.--The Secretary shall 
compile the data submitted under this section and make such data 
available to the public in a timely manner on an appropriate Internet 
website in a format that is useful to the public and to other entities.
    ``(c) Authorization of Appropriations.--There is authorized to be 
appropriated to carry out this section $1,000,000 for each of fiscal 
years 2019 through 2023.

``SEC. 399OO-5. GRANTS TO SUPPORT INFANT SAFE SLEEP.

    ``(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 SUID.
    ``(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.
    ``(c) Use of Funds.--Amounts received under a grant awarded under 
subsection (a) may be used to--
            ``(1) provide outreach and education services directly to 
        parents and families, which--
                    ``(A) may include home visits, 24-hour hotlines, 
                Internet-based educational materials, mobile health 
                technologies, and social marketing campaigns;
                    ``(B) shall apply current safe sleep guidelines 
                published by a professional pediatric organization; and
                    ``(C) may provide safe sleep-related products to 
                families for free-of-charge or at reduced cost that 
                have published, peer-reviewed evidence to support safer 
                sleep environments for infants through age one; or
            ``(2) build capacity in professionals working with families 
        to support safe sleep.
    ``(d) Safe-Sleep Products.--Any product related to safe sleep for 
an infant that is provided under subsection (c)(1)(C) shall--
            ``(1) be a full-sized crib, a non-full-sized crib, or a 
        play yard;
            ``(2) provide a flat surface;
            ``(3) not include a supplemental mattress or soft bedding; 
        and
            ``(4) be covered by, and be in compliance with, a 
        regulation or mandatory standard promulgated by the Consumer 
        Product Safety Commission.
    ``(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.
    ``(f) Set-Aside.--Not more than 5 percent of the amount of funds 
allocated 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.
    ``(g) Authorization of Appropriations.--There is authorized to be 
appropriated to carry out this section $5,000,000 for fiscal year 2019 
and $7,000,000 for each of fiscal years 2020 through 2023.

``SEC. 399OO-6. GRANTS FOR SUPPORT SERVICES.

    ``(a) 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 provisions of support services to families who have had a child 
die of sudden unexpected infant death and sudden unexplained death in 
childhood.
    ``(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.
    ``(c) Use of Funds.--Amounts received under a grant awarded under 
subsection (a) may be used to provide grief counseling, education, home 
visits, 24-hour hotlines, or information, resources, and referrals; 
ensure access to grief and bereavement services; build capacity in 
professionals working with families who experience a sudden death; or 
support groups for families who have lost a child to sudden unexpected 
infant death or sudden unexplained death in childhood.
    ``(d) Preference.--In awarding grants under subsection (a), the 
Secretary shall give preference to applicants that have a proven 
history of effective direct support services and interventions for 
sudden unexpected infant death and sudden unexplained death in 
childhood and can demonstrate experience through collaborations and 
partnerships for delivering services described in subsection (c).
    ``(e) Authorization of Appropriations.--There is authorized to be 
appropriated to carry out this section $1,000,000 for each of fiscal 
years 2019 through 2023.''.

SEC. 3. SENSE OF CONGRESS.

    It is the sense of Congress that additional research is needed to 
improve the understanding of the epidemiology of sudden unexplained 
death in childhood.

SEC. 4. REPORT TO CONGRESS.

    Not later than 1 year after the date of enactment of this Act, and 
annually 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 1-year reporting period--
            (1) information regarding the absolute number and incidence 
        of both sudden unexpected infant death and sudden unexplained 
        death in childhood, 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 unexplained death 
        in childhood;
            (2) an assessment of the extent to which various approaches 
        of preventing sudden unexpected infant death have been 
        effective;
            (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
            (4) any recommendations of the Secretary regarding such 
        part W.
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