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

Summary:
Scarlett’s Sunshine on Sudden Unexpected Death Act  This bill establishes grants to states, local agencies, and nonprofit organizations to address sudden unexpected infant and childhood deaths.  The Centers for Disease Control and Prevention (CDC) must award grants to eligible applicants to (1) conduct comprehensive death scene investigations, (2) increase the rate of standardized autopsies, and (3) obtain informed consent from families to collect genetic or tissue samples for research into the causes of such deaths. The bill also provides grants for training medical examiners, and other appropriate personnel, about standardized investigative practices, including the infant or child's medical history, and other circumstances surrounding the death.  Further, the Administration for Children and Families (ACF) of the Department of Health and Human Services also must provide grants to states to develop the capacity for local governments to comprehensively review 100% of all infant and child deaths and maintain the National Fatality Review Case Reporting System. Further, the CDC must use such national reporting system to compile and make publicly available summary data about sudden unexpected infant and childhood deaths. The CDC also must revise its death investigation forms to align with the form used under the national reporting system.  Additionally, the bill requires the ACF to award grants to (1) promote evidence-based best practices, (2) support prevention efforts, and (3) provide safe-sleep products.

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

<DOC>






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

_______________________________________________________________________

                                 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 UNEXPECTED 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 Indian 
        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 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').

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

    ``(a) Investigations.--
            ``(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.
            ``(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.
            ``(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.
            ``(4) Use of funds.--
                    ``(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.
                    ``(B) Protocols.--A standard death scene protocol 
                implemented under subparagraph (A) shall include the 
                obtaining of information on--
                            ``(i) current and past medical history of 
                        the infant or child and, as relevant, the 
                        infant's or child's family;
                            ``(ii) the circumstances surrounding the 
                        death, including any suspicious circumstances, 
                        whether there were any accidental or 
                        environmental factors associated with the 
                        death; and
                            ``(iii) in the case of a sleep-related 
                        death, the sleep position and sleep environment 
                        of the infant or child.
    ``(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 
        unexpected 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 sudden unexpected infant 
        deaths and sudden unexpected death in childhood.
            ``(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--
                    ``(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;
                    ``(B) information about the governmental and 
                nongovernmental entities with whom the eligible entity 
                will partner; and
                    ``(C) any additional information as the Secretary 
                may require.
            ``(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.
    ``(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.
    ``(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.

``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 sudden unexpected infant death 
and sudden unexpected death in childhood.
    ``(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 using a 
        grant awarded 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 sudden unexpected infant death and sudden 
        unexpected death in childhood, including the use of standard 
        death scene investigation protocols that include information 
        on--
                    ``(A) current and past medical history of the 
                infant or child and, as relevant, the infant's or 
                child's family;
                    ``(B) the circumstances surrounding the death, 
                including any suspicious circumstances;
                    ``(C) whether there were any accidental or 
                environmental factors associated with the death; and
                    ``(D) in the case of a sleep-related death, the 
                sleep position and sleep environment of the infant or 
                child;
            ``(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;
            ``(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 sudden unexpected infant death 
        and sudden unexpected death in childhood 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.--To carry out this section, 
there is authorized to be appropriated $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 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.
            ``(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.
            ``(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 Fatality Review 
                Case Reporting System.
    ``(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.

``SEC. 399OO-4. ENHANCING THE NATIONAL FATALITY REVIEW CASE REPORTING 
              SYSTEM.

    ``(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.
    ``(b) Compilation and Availability of Data.--The Secretary shall--
            ``(1) compile the data submitted under this section;
            ``(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
            ``(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.
    ``(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.

``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 sleep-related 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 at no cost 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 in compliance with current safe sleep guidelines 
        published by a professional pediatric organization;
            ``(2) be intended for use by the infant through age one; 
        and
            ``(3) 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 
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.
    ``(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.''.

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 unexpected 
infant and childhood deaths that remain unexplained following a 
comprehensive, standardized autopsy and appropriate ancillary testing.

SEC. 4. REPORT TO CONGRESS.

    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--
            (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;
            (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;
            (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.
                                 <all>