[Congressional Bills 114th Congress]
[From the U.S. Government Publishing Office]
[H.R. 4571 Introduced in House (IH)]

<DOC>






114th CONGRESS
  2d Session
                                H. R. 4571

    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

                           February 12, 2016

  Ms. Moore (for herself, Ms. Jackson Lee, Mr. Grijalva, Mr. Ryan of 
    Ohio, Mr. Hastings, Mr. Rangel, Mrs. Beatty, and Ms. Bordallo) 
 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 ``Reducing Unexpected Deaths in 
Infants and Children Act of 2016''.

SEC. 2. FINDINGS.

    Congress finds as follows:
            (1) Nearly 3,500 infants die suddenly and unexpectedly 
        every year.
            (2) Infants born to low-income women are more likely to die 
        before their first birthday than infants born in higher-income 
        households.
            (3) Non-Hispanic Black infants are more than twice as 
        likely to die of Sudden Unexpected Infant Death compared to 
        non-Hispanic White infants.
            (4) Disparities in sudden unexpected infant deaths account 
        for 14 percent of the infant mortality gap between non-Hispanic 
        Black infants compared to non-Hispanic White infants.
            (5) Preterm birth and low birth weight may be contributing 
        factors in deaths from Sudden Infant Death Syndrome, which is a 
        type of sudden unexpected infant death and the leading cause of 
        postneonatal deaths.
            (6) Timely prenatal care and appropriate birth spacing can 
        reduce the risks of early delivery and low birth weight.
            (7) Women can reduce the risk of infant mortality to their 
        infants by improving their own health, both preconception and 
        during pregnancy.
            (8) The American Academy of Pediatrics recommends regular 
        prenatal care as a strategy for preventing SIDS, noting that 
        there is ``substantial epidemiologic evidence linking a lower 
        risk of SIDS for infants whose mothers obtain regular prenatal 
        care''.

SEC. 3. 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 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) 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 for 
        sudden unexpected infant death and sudden unexplained death in 
        childhood.
            ``(2) 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.
            ``(3) 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/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. The Director in consultation with medical 
                examiners, coroners, death scene investigators, law 
                enforcement, emergency medical technicians and 
                paramedics, public health agencies, and other 
                individuals or groups determined necessary by the 
                Director shall develop a standard death scene protocol 
                for children from 1 to 4 years of age, using existing 
                protocols developed for SUID.
    ``(b) Autopsies.--
            ``(1) In general.--The Secretary, acting through the 
        Director, shall award grants to States to enable such States to 
        increase the rate at which comprehensive, standardized 
        autopsies are performed for sudden unexpected infant death and 
        sudden unexplained death in childhood.
            ``(2) 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.
            ``(3) Comprehensive autopsy.--For purposes of this 
        subsection, a comprehensive autopsy shall include genetic 
        testing and 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, selected microbiology when 
        indicated, metabolic testing, and toxicology screening of the 
        infant or child involved.
            ``(4) Guidelines.--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 determined necessary by the Director shall develop 
        national guidelines for a standard autopsy protocol for sudden 
        unexpected infant death and sudden unexplained death in 
        childhood. The Director shall ensure that the majority of such 
        consultation is with board certified forensic pathologists, 
        medical examiners, and coroners. The Director is encouraged to 
        seek additional input from child abuse experts, bereavement 
        specialists, parents, and public health agencies on nonmedical 
        aspects of the autopsy guidelines. In developing such protocol, 
        the Director shall consider autopsy protocols used by State and 
        local jurisdictions.
    ``(c) Authorization of Appropriations.--There is authorized to be 
appropriated $8,000,000 for each of fiscal years 2017 through 2021 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; and
            ``(2) 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.--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, and emergency medical technicians or paramedics 
        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;
            ``(5) in the case of State and local government entity 
        grantees, obtain equipment, including computer equipment, to 
        aid in the completion of standard death scene investigation; or
            ``(6) conduct training activities for medical examiners, 
        coroners, and forensic pathologists concerning standard autopsy 
        protocols for sudden unexpected infant death and sudden 
        unexplained death in childhood and integrate the training under 
        the grant on standard autopsy protocols in SUID and SUDC into 
        professional accreditation and training programs.
    ``(d) Authorization of Appropriations.--There is authorized to be 
appropriated to carry out this section $2,000,000 for each of fiscal 
years 2017 through 2021.

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

    ``(a) Prevention.--
            ``(1) Core capacity grants.--The Secretary, acting through 
        the Administrator, shall award grants to States to build and 
        strengthen State capacity and implement State and local infant 
        and child death review programs and prevention strategies.
            ``(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 $7,000,000 for each of fiscal years 2017 through 2021 to 
carry out subsection (a).

``SEC. 399OO-4. 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, ensure access to grief and bereavement 
services, build capacity in professionals working with families who 
experience a sudden death, and 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 community-based 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 throughout a State or region.
    ``(e) Authorization of Appropriations.--There is authorized to be 
appropriated to carry out this section $1,000,000 for each of fiscal 
years 2017 through 2021.

``SEC. 399OO-5. EVALUATION OF STATE AND REGIONAL NEEDS.

    ``(a) In General.--The Secretary, acting through the Director and 
in consultation with the Administrator, shall conduct a needs 
assessment on a State and regional basis of the availability of 
personnel, training, technical assistance, and resources for 
investigating and determining sudden unexpected infant death and sudden 
unexplained death in childhood and make recommendations to increase 
collaboration on a State and regional level for investigation and 
determination.
    ``(b) Authorization of Appropriations.--There is authorized to be 
appropriated to carry out this section $250,000 for each of fiscal 
years 2017 through 2021.''.

SEC. 4. ENHANCING PUBLIC HEALTH ACTIVITIES RELATED TO STILLBIRTH.

    Part P of title III of the Public Health Service Act (42 U.S.C. 
280g et seq.) is amended by adding at the end the following:

``SEC. 399V-6. ENHANCING PUBLIC HEALTH ACTIVITIES RELATED TO 
              STILLBIRTH.

    ``(a) Grants.--The Secretary, acting through the Director of the 
Centers for Disease Control and Prevention, shall award grants to 
eligible States to enhance and expand surveillance efforts to collect 
thorough and complete epidemiologic information on stillbirths, 
including through the utilization of the infrastructure of existing 
surveillance systems (including vital statistics systems).
    ``(b) Eligibility.--To be eligible to receive a grant under 
subsection (a), an entity shall--
            ``(1) be a State; and
            ``(2) submit to the Secretary an application at such time, 
        in such manner, and containing such information as the 
        Secretary may require, including--
                    ``(A) an assurance that the applicant will 
                implement the standardized surveillance protocol 
                developed under subsection (c); and
                    ``(B) a description of the infrastructure of 
                existing surveillance systems in the State.
    ``(c) Surveillance Protocol.--The Secretary, acting through the 
Director of the Centers for Disease Control and Prevention, shall--
            ``(1) provide for the continued development and 
        dissemination of a standard protocol for stillbirth data 
        collection and surveillance, in consultation with 
        representatives of health and advocacy organizations, State and 
        local governments, and other interested entities determined 
        appropriate by the Secretary;
            ``(2) monitor trends and identify potential risk factors 
        for further study using existing sources of surveillance data 
        and expanded sources of data from targeted surveillance 
        efforts, and methods for the evaluation of stillbirth 
        prevention efforts; and
            ``(3) develop and evaluate methods to link existing data to 
        provide more complete information for research into the causes 
        and conditions associated with stillbirth.
    ``(d) Postmortem Evaluation and Data Collection.--The Secretary, 
acting through the Director of the Centers for Disease Control and 
Prevention and in consultation with physicians, nurses, pathologists, 
geneticists, parents, and other groups determined necessary by the 
Director, shall develop guidelines for increasing the performance and 
data collection of postmortem stillbirth evaluation, including 
conducting and reimbursing autopsies, placental histopathology, and 
cytogenetic testing. The guidelines should take into account cultural 
competency issues related to postmortem stillbirth evaluation.
    ``(e) Public Health Programmatic Activities Related to 
Stillbirth.--The Secretary, acting through the Director of the Centers 
for Disease Control and Prevention, shall--
            ``(1) develop behavioral surveys for women experiencing 
        stillbirth, using existing State-based infrastructure for 
        pregnancy-related information gathering;
            ``(2) increase the technical assistance provided to States, 
        Indian tribes, territories, and local communities to enhance 
        capacity for improved investigation of medical and social 
        factors surrounding stillbirth events; and
            ``(3) establish best practices for home visits after the 
        death of a child, using existing standards for such best 
        practices, as available.
    ``(f) Public Education and Prevention Programs.--The Secretary, 
acting through the Director of the Centers for Disease Control and 
Prevention and in consultation with health care providers, public 
health organizations, maternal and child health programs, parents, and 
other groups deemed necessary by the Director, shall directly or 
through grants, cooperative agreements, or contracts to eligible 
entities, develop and conduct evidence-based public education and 
prevention programs aimed at reducing the occurrence of stillbirth 
overall and addressing the racial and ethnic disparities in its 
occurrence, including--
            ``(1) public education programs, services, and 
        demonstrations which are designed to increase general awareness 
        of stillbirths; and
            ``(2) the development of tools for the education of health 
        professionals and women concerning the known risk factors for 
        stillbirth, promotion of fetal movement awareness, and the 
        importance of early and regular prenatal care to monitor the 
        health and development of the fetus up to and during delivery.
    ``(g) Task Force.--The Secretary, in consultation with the Director 
of the National Institutes of Health, the Director of the Centers for 
Disease Control and Prevention, and health care providers, researchers, 
parents, and other groups deemed necessary by the Directors, shall 
establish a task force to develop a national research plan to determine 
the causes of, and how to prevent, stillbirth.
    ``(h) Grants for Support Services.--
            ``(1) In general.--The Secretary, acting through the 
        Administrator of the Health Resources and Services 
        Administration, shall award grants to national organizations, 
        State and local health departments, and community-based 
        organizations, for the provisions of support services to 
        families who have experienced stillbirth.
            ``(2) Application.--To be eligible to receive a grant under 
        paragraph (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 to provide grief counseling, 
        education, home visits, 24-hour hotlines, ensure access to 
        grief and bereavement services, build capacity in professionals 
        working with families who experience a sudden death, and 
        support groups for families who have experienced stillbirth.
            ``(4) Preference.--In awarding grants under paragraph (1), 
        the Secretary shall give preference to applicants that are 
        community-based organizations that have a proven history of 
        providing effective direct support services and interventions 
        related to stillbirths and can demonstrate experience through 
        collaborations and partnerships for delivering services 
        throughout a State or region.
    ``(i) Definitions.--In this section:
            ``(1) 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).
            ``(2) The term `stillbirth' means a spontaneous, not 
        induced, pregnancy loss 20 weeks or later after gestation, or 
        if the age of the fetus is not known, then a fetus weighing 350 
        grams or more.
    ``(j) Authorization of Appropriations.--There is authorized to be 
appropriated to carry out this section $3,000,000 for each of fiscal 
years 2017 through 2021.''.
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