[Congressional Bills 111th Congress]
[From the U.S. Government Publishing Office]
[S. 1445 Introduced in Senate (IS)]

111th CONGRESS
  1st Session
                                S. 1445

    To amend the Public Health Service Act to improve the health of 
 children and reduce the occurrence of sudden unexpected infant death 
     and to enhance public health activities related to stillbirth.


_______________________________________________________________________


                   IN THE SENATE OF THE UNITED STATES

                             July 14, 2009

    Mr. Lautenberg (for himself, Mrs. Gillibrand, and Mr. Nelson of 
   Nebraska) 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 reduce the occurrence of sudden unexpected infant death 
     and to enhance public health activities related to stillbirth.

    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 ``Stillbirth and SUID Prevention, 
Education, and Awareness Act of 2009''.

SEC. 2. FINDINGS.

    Congress makes the following findings:
            (1) Every year, there are more than 25,000 stillbirths in 
        the United States.
            (2) Common diagnosable causes for stillbirth include 
        genetic abnormalities, umbilical cord accidents, infections, 
        and placental problems.
            (3) A number of risk factors for stillbirth have been 
        described in pregnant women such as maternal age, obesity, 
        smoking, diabetes, and hypertension.
            (4) Because of advances in medical care over the last 30 
        years, much more is known about the causes of stillbirth. But 
        for as many as 50 percent of stillbirths, the cause is never 
        identified.
            (5) Sudden Unexpected Infant Death (SUID) is the sudden 
        death of an infant under 1 year of age that when first 
        discovered did not have an obvious cause. These include those 
        deaths that are later determined to be from explained as well 
        as unexplained causes.
            (6) In 2004, approximately 4,600 infants died suddenly and 
        unexpectedly of no immediate obvious cause. Each year 
        approximately 200 deaths of children between the ages of 1 and 
        4 remain unexplained after a thorough case investigation is 
        conducted.
            (7) The Sudden Infant Death Syndrome (SIDS) rate has been 
        declining significantly since the early 1990s. However, 
        research has found that the decline in SIDS since 1999 can be 
        explained by increasing Sudden Unexpected Infant Death rates.
            (8) Many Sudden Unexpected Infant Deaths are not 
        investigated and, even when they are, cause-of-death data are 
        not collected and reported consistently.
            (9) Inaccurate or inconsistent classification of cause and 
        manner of death impedes prevention efforts and complicates the 
        ability to understand risk factors related to these deaths.
            (10) The National Child Death Review Case Reporting System 
        collects comprehensive information on the risk factors 
        associated with SUID deaths. As of March 2009, 29 of the 49 
        States conducting child death reviews are voluntarily 
        submitting data to this reporting system.

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 S--SUDDEN UNEXPECTED INFANT DEATH AND SUDDEN UNEXPLAINED DEATH 
                              IN CHILDHOOD

``SEC. 399HH. DEFINITION.

    ``In this part:
            ``(1) Administrator.--The term `Administrator' means the 
        Administrator of the Health Resources and Services 
        Administration.
            ``(2) Director.--The term `Director' means the Director of 
        the Centers for Disease Control and Prevention.
            ``(3) State.--The term `State' includes the 50 States and 
        the District of Columbia.
            ``(4) 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.
            ``(5) 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, 
        including a review of the clinical history and circumstances of 
        death, and performance of a complete autopsy with appropriate 
        ancillary testing.

``SEC. 399II. 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 and to conduct 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 and 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 of all major organs and 
        tissues including the brain, complete radiographs, metabolic 
        testing, and toxicology screening of the infant/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 non-medical 
        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 and 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, such sums as may be necessary for each of fiscal years 
2010 through 2014, to carry out this section.

``SEC. 399JJ. TRAINING.

    ``(a) Grants.--The Secretary, acting through the Director, shall 
award grants to eligible entities for the provision of training on 
death scene investigation.
    ``(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 non-profit 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, 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 
        is 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 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.
    ``(d) Authorization of Appropriations.--There is authorized to be 
appropriated to carry out this section, such sums as may be necessary 
for each of fiscal years 2010 through 2014.

``SEC. 399KK. CHILD DEATH REVIEW.

    ``(a) Prevention.--
            ``(1) Core capacity grants.--The Secretary, acting through 
        the Administrator, shall award grants to States to build 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, such sums as may be necessary for each of fiscal years 
2010 through 2014, to carry out subsection (a).

``SEC. 300LL. NATIONAL REGISTRY FOR SUDDEN UNEXPECTED INFANT DEATHS AND 
              SUDDEN UNEXPLAINED DEATH IN CHILDHOOD.

    ``(a) Establishment.--The Secretary, acting through the Director 
and in consultation with the national child death case reporting 
system, the Administrator of the Health Resources and Services 
Administration, national health organizations, and professional 
societies with experience and expertise relating to reducing SUID and 
SUDC, shall establish a population-based SUID and SUDC case registry 
that can facilitate the understanding of the root causes, rates, and 
trends of SUID and SUDC.
    ``(b) National Registry.--The national registry established under 
subsection (a) 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; and
            ``(4) facilitating the sharing of information to improve 
        the public reporting of surveillance and vital statistics 
        describing the epidemiology of SUID and SUDC.
    ``(c) Authorization of Appropriations.--There are authorized to be 
appropriated to carry out this section, such sums as necessary for each 
of fiscal years 2010 through 2014.

``SEC. 399MM. 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 public health awareness and education campaign to 
provide information that is focused on decreasing the risk factors for 
sudden unexpected infant death and sudden unexplained death in 
childhood, including educating individuals 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 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 nurses, 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, such sums as may be necessary 
for each of fiscal years 2010 through 2014.

``SEC. 399NN. 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, such sums as may be necessary 
for each of fiscal years 2010 through 2014.

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

    ``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 death 
and make recommendations to increase collaboration on a State and 
regional level for investigation and determination.''.

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--
            (1) by redesignating the second section 399R (relating to 
        the amyotrophic lateral sclerosis registry (42 U.S.C. 280g-7)) 
        and the third section 399R (relating to support for patients 
        receiving a positive diagnosis of down syndrome or other 
        prenatally or postnatally diagnosed conditions (42 U.S.C. 280g-
        8)) as sections 399S and 399T, respectively; and
            (2) by adding at the end the following:

``SEC. 399U. 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.
    ``(b) Eligibility.--To be eligible to receive a grant under 
subsection (a), an entity shall be--
            ``(1) 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 an assurance that the 
        applicant will implement the standardized surveillance protocol 
        developed under subsection (c).
    ``(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 histopathlogy and 
cytogentic 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 risks factors for 
        stillbirth, promotion of fetal movement awareness, taking 
        proactive steps to monitor a baby's movement beginning at 
        approximately 28 weeks into the pregnancy, 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) Definition.--In this section, the term `stillbirth' means a 
spontaneous, not induced, pregnancy loss 20 weeks or after, or if the 
age of the fetus is not known, then a fetus weighing 350 grams or more.
    ``(j) Authorization of Appropriations.--There are authorized to be 
appropriated to carry out this section, such sums as may be necessary 
for each of fiscal years 2010 through 2014.''.

SEC. 5. 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>