H.R. 669 — what changed

changed Title III of the The Public Health Service Act (42 U.S.C. 241 et seq.) is amended by adding at the end inserting after section 317L of such Act (42 U.S.C. 247b–13) the following:

changed “W Sudden unexpected infant death “317L–1. Stillbirth and sudden unexplained death deaths in childhoodthe young

changed “399OO. Definitions“(a) Stillbirth activities—The Secretary, acting through the Director of the Centers for Disease Control and Prevention, shall continue to carry out activities of the Centers relating to stillbirth, including the following:

changed “In this part:“(1) Surveillance

changed “(1) Administrator—The term Administrator means “(A) In general—The Secretary shall provide for surveillance efforts to collect thorough, complete, and high-quality epidemiologic information on stillbirths, including through the Administrator utilization of existing surveillance systems (including the Health Resources National Vital Statistics System (NVSS) and Services Administration.other appropriately equipped birth defects surveillance programs).

changed “(2) Death scene investigator—The term “death scene investigator” means an individual certified as a death scene investigator “(B) Standard protocol for surveillance—The Secretary, in consultation with qualified individuals and organizations determined appropriate by an accredited professional certification board.the Secretary, to include representatives of health and advocacy organizations, State and local governments, public health officials, and health researchers, shall—

changed “(3) Director—The term Director means “(i) provide for the Director continued development and dissemination of the Centers a standard protocol for Disease Control stillbirth data collection and Prevention.surveillance; and

changed “(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 “(ii) not less than every 5 years, review and, as appropriate, update such terms are defined in section 4 of the Indian Self-Determination and Education Assistance Act).protocol.

changed “(5) Sudden unexpected infant death; SUID—The terms sudden unexpected infant death “(2) Postmortem data collection 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 evaluation—The Secretary, in consultation with qualified individuals and organizations determined appropriate by the Secretary, to be from explained as well as unexplained causes.include representatives of health professional organizations, shall—

changed “(6) Sudden unexplained death in childhood; SUDC—The terms sudden unexplained death in childhood and SUDC mean “(A) upon the sudden death enactment of a child older this section, and not less than 1 year of age which remains unexplained after a thorough case investigation that includes a every 5 years thereafter, review of existing guidelines for increasing and improving the clinical history quality and circumstances completeness of death postmortem stillbirth evaluation and performance of a complete autopsy with appropriate ancillary testing.related data collection, including conducting and reimbursing autopsies, placental histopathology, and cytogenetic testing; and

changed “399OO–1. Death scene investigation “(B) develop strategies for implementing such guidelines and autopsyaddressing any barriers to implementation of such guidelines.

changed “(a) Investigations“(b) Sudden unexpected infant death activities—The Secretary, acting through the Director of the Centers for Disease Control and Prevention, shall continue to carry out activities of the Centers relating to sudden unexpected infant death (SUID), including the following:

changed “(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.Surveillance

changed “(2) Application—To be eligible to receive a grant under paragraph (1), a State “(A) In general—The Secretary shall submit provide for surveillance efforts to the Secretary an application at such time, in such manner, gather sociodemographic, death scene investigation, clinical history, and containing such autopsy information as on SUID cases through the Secretary may require.review of existing records on SUID, including through the utilization of existing surveillance systems (including the national child death review case reporting system and SUID case registries).

changed “(3) Use “(B) Standard protocol for surveillance—The Secretary, in consultation with qualified individuals and organizations determined appropriate by the Secretary, to include representatives of fundshealth and advocacy organizations, State and local governments, and public health officials, shall—

changed “(A) In general—A State shall use amounts received under a grant under paragraph (1) to improve the completion of comprehensive death scene investigations “(i) provide for sudden unexpected infant death and sudden unexplained death in childhood, including through the awarding continued development and dissemination of subgrants to local jurisdictions to be used to implement a standard death scene investigation protocols protocol for sudden unexpected infant death and sudden unexplained death in childhood SUID data reporting and conduct comprehensive, standardized autopsies.surveillance; and

changed “(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.“(ii) not less than every 5 years, review and, as appropriate, update such protocol.

changed “(b) Autopsies“(C) Goals for enhancing surveillance—In carrying out activities under this subsection, the Secretary shall seek to accomplish the following goals:

changed “(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 “(i) Collecting thorough, complete, and sudden unexplained high-quality death in childhood.scene investigation data, clinical history, and autopsy findings.

changed “(2) Application—To be eligible to receive a grant under paragraph (1), a State shall submit to “(ii) Collecting standardized information about the Secretary an application at such time, in such manner, environmental and containing such information as medical circumstances of death (including the Secretary may require.sleep environment and quality of the death scene investigation).

changed “(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 “(iii) Supporting multidisciplinary infant death reviews, such as those performed by child death review committees, to collect and tissues including review the brain, complete radiographs, vitreous fluid analysis, photo documentation, selected microbiology when indicated, metabolic testing, information and toxicology screening of the infant or child involved.classify and characterize SUID using a standardized classification system.

changed “(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 “(iv) Facilitating the majority sharing of such consultation is with board certified forensic pathologists, medical examiners, and coroners. The Director is encouraged information to seek additional input from child abuse experts, bereavement specialists, parents, and improve the public health agencies on nonmedical aspects reporting of the autopsy guidelines. In developing such protocol, the Director shall consider autopsy protocols used by State surveillance and local jurisdictions.vital statistics describing the epidemiology of SUID.

changed “(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 “(2) Standard protocol 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.investigation

changed “(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.“(A) In General—The Secretary, in consultation with forensic pathologists, medical examiners, coroners, medicolegal death scene investigators, law enforcement personnel, emergency medical technicians and paramedics, public health agencies, and other individuals and organizations determined appropriate by the Secretary, shall—

changed “399OO–2. Training“(i) provide for the continued dissemination of a standard death scene investigation protocol; and

changed “(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.“(ii) not less than every 5 years, review and, as appropriate, update such protocol.

changed “(b) Eligible entities—To be eligible to receive a grant “(B) Content of Death Scene Protocol—The protocol disseminated under subsection (a), an entity shall—subparagraph (A) shall include information on—

changed “(1) be—“(i) the current and past medical history of the infant;

changed “(A) a State or local government entity; or“(ii) family medical history;

changed “(B) a nonprofit private entity; and“(iii) the circumstances surrounding the death, including any suspicious circumstances;

changed “(2) submit to “(iv) the Secretary an application at such time, in such manner, sleep position and containing such information as sleep environment of the Secretary may require.infant; and

changed “(c) Use of funds—An eligible entity shall use amounts received under a grant under this section to—“(v) any accidental or environmental factors associated with death.

changed “(1) provide training to medical examiners, coroners, death scene investigators, law enforcement personnel, and emergency medical technicians or paramedics concerning death scene investigations “(3) Guidelines for SUID and SUDC, including the use of a standard death scene investigation protocols that include information on autopsy protocol—The Secretary, in consultation with the current and past medical history Attorney General of the infant/child, the circumstances surrounding the death including any suspicious circumstances, the sleep position United States, forensic pathologists, medical examiners, coroners, pediatric pathologists, pediatric cardiologists, pediatric neuropathologists, geneticists, infectious disease specialists, and sleep environment of the infant/child, other individuals and whether there were any accidental or environmental factors associated with organizations determined appropriate by the death;Secretary, shall—

changed “(2) provide training directly to individuals who are responsible “(A) develop guidelines for conducting and reviewing death scene investigations a standard autopsy protocol for sudden unexpected infant death and sudden unexplained death in childhood;SUID; and

changed “(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;“(C) not less than every 5 years, review and, as appropriate, update such guidelines.

changed “(4) Training—The Secretary, in consultation with the case of national and State-based grantees that are comprised Attorney General 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;United States, may—

changed “(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“(A) conduct or support—

changed “(6) conduct “(i) training activities for medical examiners, coroners, and forensic pathologists concerning standard autopsy protocols for sudden unexpected infant medicolegal death scene investigators, law enforcement personnel, and sudden unexplained emergency medical technicians or paramedics concerning death in childhood and integrate the training under scene investigations for SUID, including the grant on use of standard autopsy death scene investigation protocols in SUID and SUDC into professional accreditation and training programs.disseminated under paragraph (2); and

changed “(d) Authorization of appropriations—There is authorized to be appropriated to carry out this section $2,000,000 “(ii) training activities for each of fiscal years 2014 through 2018.medical examiners, coroners, and forensic pathologists concerning standard autopsy protocols for SUID developed under paragraph (3); and

changed “399OO–3. Child death review“(B) make recommendations to health professional organizations regarding the integration of protocols disseminated or developed under this subsection, and training conducted or supported under this paragraph, into existing training and continuing education programs.

changed “(a) Prevention“(c) Sudden unexplained death in childhood activities—The Secretary, acting through the Director of the Centers for Disease Control and Prevention, shall continue to carry out activities of the Centers relating to sudden unexpected death in childhood (SUDC), including the following:

changed “(1) Core capacity grants—The Surveillance—The Secretary, acting through in consultation with the Administrator, Director of the National Institutes of Health, shall award grants to States provide for surveillance efforts to build and strengthen State capacity and implement State and local child gather sociodemographic, death review programs scene investigation, clinical history, and prevention strategies.autopsy information on SUDC cases through the review of existing records on SUDC, including through the utilization of existing surveillance systems (including the Sudden Death in the Young Registry).

changed “(2) Planning grants—The Guidelines for a standard autopsy protocol—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 consultation with the development Attorney General of local child death review programs the United States, forensic pathologists, medical examiners, coroners, pediatric pathologists, pediatric cardiologists, pediatric neuropathologists, geneticists, infectious disease specialists, and prevention strategies.other individuals and organizations determined appropriate by the Secretary, may—

changed “(3) Application—To be eligible to receive a grant under paragraph (1) or (2), “(A) develop guidelines for a State shall submit to the Secretary an application at such time, in such manner, and containing such information as the Secretary may require.standard autopsy protocol for SUDC; and

changed “(4) Technical assistance—The Secretary, acting through the Administrator, shall provide technical assistance to assist States—“(B) not less than every 5 years, review and, as appropriate, update such guidelines.

changed “(A) in developing “(3) Review of applicability of programs and activities—Not later than 18 months after the capacity for comprehensive child death review programs, including date of enactment of this section, the development Secretary, acting through the Director of best practices the Centers for Disease Control and Prevention, and in consultation with the implementation Director of such programs; andthe National Institutes of Health, shall complete an evaluation of the possibility of carrying out or intensifying, with respect to SUDC, the types of programs and activities that are authorized to be carried out under subsection (b) with respect to SUID.

changed “(B) in maintaining “(d) Report to Congress—Not later than 2 years after the national child death case reporting system.date of enactment of this Act, the Secretary, acting through the Director of the Centers for Disease Control and Prevention, shall submit to the Congress a report on the implementation of this section. Such report shall include—

changed “(b) Authorization of appropriations—There is authorized to be appropriated $7,000,000 for each “(1) the results of fiscal years 2014 through 2018 to carry out the evaluation under subsection (a).(c)(3); and

changed “399OO–4. Enhancing the national child death case reporting system“(2) a description of any activities that—

changed “(a) In general—The Secretary, acting through “(A) are being carried out by the Director Centers for Disease Control and Prevention 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 National Institutes of SUID and SUDC with respect Health relating to such ages.stillbirth, SUID, or SUDC; and

changed “(b) Goals of modified national child death case reporting system—The modifications under subsection (a) “(B) are in addition to the national child death case reporting system shall facilitate the collection, analysis, and dissemination of data by—activities being carried out pursuant to this section.

changed “(1) implementing a surveillance and monitoring system based on thorough and complete death scene investigation data, clinical history, and autopsy findings;“(e) Definitions—In this section:

changed “(2) collecting standardized information about the environmental, medical, genetic, and social circumstances of death (including sleep environment and quality of the “(1) The term “stillbirth” means a spontaneous fetal 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);that—

changed “(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;“(A) occurs at 20 or more weeks gestation; or

changed “(4) facilitating the sharing of information to improve “(B) if the public reporting age of surveillance and vital statistics describing the epidemiology of SUID and SUDC; andfetus is not known, involves a fetus weighing 350 grams or more.

changed “(5) utilizing current infrastructure “(2) The terms “sudden unexpected infant death” and “SUID” mean the death of existing surveillance systems.an infant less than 1 year of age—

changed “(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.“(A) which occurs suddenly and unexpectedly; and

changed “399OO–5. Public awareness and education campaign“(B) whose cause—

changed “(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 “(i) 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 not immediately obvious prior to smoking during pregnancy and after birth.investigation; and

changed “(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.“(ii) is either explained upon investigation or remains unexplained.

changed “(c) Consultation—In establishing “(3) The terms “sudden unexplained death in childhood” and implementing the campaign under subsection (a), “SUDC” mean 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 sudden death of a 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.1 year of age or older which remains unexplained after a thorough case investigation that includes—

changed “(d) Grants“(A) a review of the clinical history and circumstances of death; and

changed “(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 “(B) performance of education and outreach programs for health care providers, parents, child care providers, public health agencies, and community organizations.a complete autopsy with appropriate ancillary testing.

changed “(2) Application—To be eligible to receive a grant under paragraph (1), an entity “(f) Funding—This section shall submit not be construed to the Secretary an application at such time, in such manner, and containing such information as increase the Secretary may require.amount of appropriations that are authorized to be appropriated for any fiscal year.”

removed “(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.

removed “399OO–6. Grants for support services

removed “(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.

removed “(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.

removed “(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.

removed “(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.

removed “(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.

removed “399OO–7. Evaluation of State and regional needs

removed “(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.

removed “(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.”