[Congressional Bills 113th Congress]
[From the U.S. Government Publishing Office]
[S. 314 Introduced in Senate (IS)]

113th CONGRESS
  1st Session
                                 S. 314

    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

                           February 13, 2013

Mr. Lautenberg 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 ``Sudden Unexpected Death Data 
Enhancement and Awareness 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 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 older than 1 year of age 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 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) Study on Genetic Testing.--The Director, in consultation with 
medical examiners, coroners, forensic pathologists, geneticists, 
researchers, public health officials, and other individuals and groups 
determined necessary by the Director, shall commission a study to 
determine the benefits and appropriateness of genetic testing 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 
testing and standard protocols for the collection and storage of 
specimens suitable for genetic testing.
    ``(d) Authorization of Appropriations.--There is authorized to be 
appropriated $8,000,000 for each of fiscal years 2014 through 2018 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, 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 2014 through 2018.

``SEC. 399OO-3. 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 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 child death review program or States in which the 
        only child death review programs are State-based, for the 
        development of local 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 
                child death review programs, including the development 
                of best practices for the implementation of such 
                programs; and
                    ``(B) in maintaining the national child death case 
                reporting system.
    ``(b) Authorization of Appropriations.--There is authorized to be 
appropriated $7,000,000 for each of fiscal years 2014 through 2018 to 
carry out subsection (a).

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

    ``(a) In General.--The Secretary, acting through the Director and 
in consultation with the national child death case reporting system, 
national health organizations, and professional societies with 
experience and expertise relating to reducing SUID and SUDC, shall 
modify such national death case reporting system, in accordance with 
subsection (b), to assure that such system provides for population-
based data for ages 0 through 4 years of age and facilitates the 
understanding of the root causes, rates, and trends of SUID and SUDC 
with respect to such ages.
    ``(b) Goals of Modified National Child Death Case Reporting 
System.--The modifications under subsection (a) to the national child 
death case reporting system shall facilitate the collection, analysis, 
and dissemination of data by--
            ``(1) implementing a surveillance and monitoring system 
        based on thorough and complete death scene investigation data, 
        clinical history, and autopsy findings;
            ``(2) collecting standardized information about the 
        environmental, medical, genetic, and social circumstances of 
        death (including sleep environment and quality of the death 
        scene investigation) if determined that such may correlate with 
        infant and early childhood deaths, as well as information from 
        other law enforcement, medical examiner, coroner, emergency 
        medical services (EMS), medical records, and vital records (if 
        possible);
            ``(3) supporting multidisciplinary infant and early 
        childhood death reviews such as those performed by child death 
        review committees to collect and review the standardized 
        information and accurately and consistently classify and 
        characterize SUID and SUDC;
            ``(4) facilitating the sharing of information to improve 
        the public reporting of surveillance and vital statistics 
        describing the epidemiology of SUID and SUDC; and
            ``(5) utilizing current infrastructure of existing 
        surveillance systems.
    ``(c) Authorization of Appropriations.--There is authorized to be 
appropriated to carry out this section $3,000,000 for each of fiscal 
years 2014 through 2018.

``SEC. 399OO-5. PUBLIC AWARENESS AND EDUCATION CAMPAIGN.

    ``(a) Establishment.--The Secretary, acting through the 
Administrator and in consultation with the Director and the Director of 
the National Institutes of Health, shall establish and implement a 
culturally competent research-based public health awareness and 
education campaign to provide information that is focused on decreasing 
the risk factors that contribute to sudden unexpected infant death and 
sudden unexplained death in childhood, including educating individuals 
and organizations about safe sleep environments, sleep positions, and 
reducing exposure to smoking during pregnancy and after birth.
    ``(b) Targeted Populations.--The campaign under subsection (a) 
shall be designed to reduce health disparities through the targeting of 
populations with high rates of sudden unexpected infant death and 
sudden unexplained death in childhood.
    ``(c) Consultation.--In establishing and implementing the campaign 
under subsection (a), the Secretary shall consult with national 
organizations representing health care providers, including nurses and 
physicians, parents, child care providers, children's advocacy and 
safety organizations, maternal and child health programs and women's, 
infants', and children's nutrition professionals, and other individuals 
and groups determined necessary by the Secretary for such establishment 
and implementation.
    ``(d) Grants.--
            ``(1) In general.--In carrying out the campaign under 
        subsection (a), the Secretary shall award grants to national 
        organizations, State and local health departments, and 
        community-based organizations for the conduct of education and 
        outreach programs for health care providers, parents, child 
        care providers, public health agencies, and community 
        organizations.
            ``(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.
    ``(e) Authorization of Appropriations.--There is authorized to be 
appropriated to carry out this section $7,000,000 for fiscal year 2014 
and $5,000,000 for each of fiscal years 2015 through 2018.

``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, and community-based 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, 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 $500,000 for each of fiscal 
years 2014 through 2018.

``SEC. 399OO-7. 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 2014 through 2018.''.

SEC. 3. 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 and metropolitan areas 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 or a major metropolitan area (as defined 
        by the Secretary); 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 or major 
                metropolitan area, as applicable.
    ``(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; and
            ``(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.
    ``(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 
        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.
            ``(3) 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, and support groups 
        for families who have experienced stillbirth.
            ``(4) Preference.--In awarding grants under subsection (a), 
        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 2014 through 2018.''.

SEC. 4. REPORT TO CONGRESS.

    Not later than 2 years after the date of enactment of this Act, 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 
Congress a report describing the progress made in implementing this Act 
(and the amendments made by this Act).
                                 <all>