A bill to amend the Public Health Service Act to enhance public health activities related to stillbirth and sudden unexpected infant death.

Summary: Preventing Stillbirth and SUID Act of 2008 - Amends the Public Health Service Act to require the Secretary of Health and Human Services to develop: (1) a standard definition of stillbirth; and (2) a standard protocol for stillbirth data collection and surveillance, including enhancing the National Vital Statistics System for the reporting of stillbirths.

Requires the Secretary, acting through the Administrator of the Health Resources and Services Administration (HRSA), the Director of the Centers for Disease Control and Prevention (CDC), and the Director of the National Institutes of Health (NIH), to establish: (1) a national registry that can facilitate the understanding of root causes, rates, and trends of stillbirth; (2) public education and prevention programs aimed at reducing the occurrence of stillbirth; and (3) a population-based sudden, unexpected infant deaths (SUID) case registry that can facilitate the understanding of the root causes, rates, and trends of SUID.

SECTION 1. SHORT TITLE.

    This Act may be cited as the ``Preventing Stillbirth and SUID Act 
of 2008''.

SEC. 2. FINDINGS.

    Congress makes the following findings:
            (1) Every year, more than 25,000 women in the United States 
        experience stillbirth.
            (2) Common diagnosable causes for stillbirth include 
        genetic abnormalities, umbilical cord accidents, infections, 
        and placental problems, however, more than half of all 
        stillbirths remain unexplained.
            (3) A number of risk factors for stillbirth have been 
        described in pregnant women such as maternal age, obesity, 
        smoking, diabetes, hypertension, and previous stillbirth.
            (4) Good prenatal care, not smoking, and not drinking 
        alcohol are helpful strategies for pregnant women to reduce the 
        risk of stillbirth, however, researchers continue to perform 
        studies into other effective modes of reducing the risk, 
        including monitoring fetal activity or ``in utero'' movement 
        starting at approximately 28 weeks.
            (5) Half of the more than 4,500 sudden, unexpected infant 
        deaths (SUID) that occur each year in the United States are due 
        to sudden infant death syndrome (SIDS), which is the leading 
        cause of SUID and of all deaths among infants aged 1 to 12 
        months.
            (6) Sudden infant death syndrome is a diagnosis of 
        exclusion and is only determined after all known causes are 
        excluded by a thorough examination of the death scene, a review 
        of the clinical history, and performance of an autopsy. 
        However, some SUID are not investigated and, even when they 
        are, cause-of-death data are not collected and reported 
        consistently.
            (7) Inaccurate classification of cause and manner of death 
        impedes prevention efforts and complicates our ability to 
        understand risk factors related to these deaths.
            (8) Death certificate data cannot fully characterize the 
        sudden, unexpected infant deaths nor identify potential risk 
        factors amenable to prevention.

SEC. 3. ENHANCING PUBLIC HEALTH ACTIVITIES RELATED TO STILLBIRTH.

    (a) In General.--Part B of title XI of the Public Health Service 
Act (42 U.S.C. 300c-12 et seq.) is amended by adding at the end the 
following:

``SEC. 1123. NATIONAL REGISTRY AND PUBLIC HEALTH PROGRAMS FOR 
              STILLBIRTH.

    ``(a) Determination of Standard Stillbirth Definition and 
Protocol.--
            ``(1) In general.--For purposes of this section, the 
        Secretary shall provide for the development of--
                    ``(A) a standard definition of stillbirth; and
                    ``(B) a standard protocol for stillbirth data 
                collection and surveillance, including--
                            ``(i) enhancing the National Vital 
                        Statistics System for the reporting of 
                        stillbirths; and
                            ``(ii) expanding active population-based 
                        surveillance efforts currently underway at the 
                        Centers for Disease Control and Prevention, 
                        including utilizing the infrastructure of 
                        existing birth defects surveillance registries 
                        to collect thorough and complete epidemiologic 
                        information on stillbirths.
            ``(2) Consultation.--The Secretary shall ensure that the 
        standard definition and protocol described in paragraph (1) are 
        developed in a manner that ensures the consultation of 
        representatives of health and advocacy organizations, State and 
        local governments, and other interested entities specified by 
        the Secretary.
    ``(b) Establishment.--The Secretary, acting through the 
Administrator of the Health Resources and Services Administration, the 
Director of the Centers for Disease Control and Prevention, and the 
Director of the National Institutes of Health, and in consultation with 
national health organizations and professional societies with expertise 
relating to reducing stillbirths and infant mortality, shall 
establish--
            ``(1) a national registry that can facilitate the 
        understanding of root causes, rates, and trends of stillbirth; 
        and
            ``(2) public education and prevention programs aimed at 
        reducing the occurrence of stillbirth.
    ``(c) National Registry.--The national registry established under 
subsection (b)(1) shall facilitate the collection, analysis, and 
dissemination of data by--
            ``(1) implementing a surveillance and monitoring system 
        based on the protocols developed in subsection (a)(1)(B);
            ``(2) developing standardized protocols for thorough and 
        complete investigation of stillbirth, including protocols for 
        autopsy and pathological examinations of the fetus and 
        placenta, and other postmortem tests for surveillance of 
        stillbirth;
            ``(3) identifying trends, potential risk factors for 
        further study, and methods for the evaluation of prevention 
        efforts; and
            ``(4) supporting efforts in collection of vital records, 
        active case finding, linkage studies, and other epidemiologic 
        efforts to identify potential risk factors and prevention 
        opportunities.
    ``(d) Public Education and Prevention Programs.--The Secretary, 
acting through the Director of the Centers for Disease Control and 
Prevention and the Director of the National Institutes of Health, shall 
directly or through grants, cooperative agreements, or contracts to 
eligible entities, develop and conduct public education and prevention 
programs established under subsection (b)(2), 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 pregnant women about the early-warning signs 
        of stillbirth, which may include monitoring of fetal movement 
        or baby in-utero.
    ``(e) Authorization of Appropriations.--There are authorized to be 
appropriated to carry out this section, $5,000,000 for fiscal year 2009 
and such sums as may be necessary for each of fiscal years 2010 through 
2013.''.
    (b) Conforming Amendment.--The heading of part B of title XI of the 
Public Health Service Act (42 U.S.C. 300c-12 et seq.) is amended by 
adding at the end the following: ``and stillbirth''.

SEC. 4. ENHANCING PUBLIC HEALTH ACTIVITIES RELATED TO SUDDEN UNEXPECTED 
              INFANT DEATH.

    (a) In General.--Part B of title XI of the Public Health Service 
Act (42 U.S.C. 300c-12 et seq.), as amended by section 3, is further 
amended by adding at the end the following:

``SEC. 1124. NATIONAL REGISTRY FOR SUDDEN UNEXPECTED INFANT DEATHS.

    ``(a) Definition.--In this section, the term `sudden, unexpected 
infant deaths' (referred to in this section as `SUID') means infant 
deaths that have no obvious cause of death, are not the result of a 
chronic disease or known illness, are unexpected, and not explainable 
without a more careful examination. These deaths may include deaths due 
to suffocation, poisoning, injuries, falls, sudden infant death 
syndrome, or previously unrecognized illness or disorder.
    ``(b) Establishment.--The Secretary, acting through the 
Administrator of the Health Resources and Services Administration, the 
Director of the Centers for Disease Control and Prevention, and the 
Director of the National Institutes of Health, and in consultation with 
national health organizations and professional societies with 
experience and expertise relating to reducing SUID, shall establish a 
population-based SUID case registry that can facilitate the 
understanding of the root causes, rates, and trends of SUID.
    ``(c) National Registry.--The national registry established under 
subsection (b) 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, social, and genetic circumstances that 
        may correlate with infant deaths (including sleep environment 
        and the quality of the death scene investigation) from the SUID 
        Initiative Reporting Form or equivalent, as well as other law 
        enforcement, medical examiner, coroner, emergency medical 
        services (EMS), and medical records;
            ``(3) promoting the use of Centers for Disease Control and 
        Prevention standardized SUID death investigation and reporting 
        tools as well as standardized autopsy protocols;
            ``(4) establishing a standardized classification system for 
        defining subcategories of SIDS and SUID for surveillance and 
        prevention research activities;
            ``(5) supporting multidisciplinary infant death reviews 
        such as those performed by child death review committees and 
        fetal infant mortality committees to collect and review the 
        standardized information and accurately and consistently 
        classify and characterize SUID; and
            ``(6) improving public reporting of surveillance and 
        descriptive epidemiology of SUID by supplementing vital 
        statistics data.
    ``(d) Authorization of Appropriations.--There are authorized to be 
appropriated to carry out this section, $5,000,000 for fiscal year 2009 
and such sums as necessary for each of fiscal years 2010 through 
2013.''.
    (b) Conforming Amendment.--The heading of part B of title XI of the 
Public Health Service Act (42 U.S.C. 300c-12 et seq.), as amended by 
section 3, is further amended by adding at the end the following: ``, 
and sudden unexpected infant death''.