IIB 113th CONGRESS 2d Session H. R. 669 IN THE SENATE OF THE UNITED STATES September 10, 2014 Received; read twice and referred to the Committee on Health, Education, Labor, and Pensions AN ACT 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.

1. Short title This Act may be cited as the Sudden Unexpected Death Data Enhancement and Awareness Act . 2. Stillbirth and sudden deaths in the young The Public Health Service Act is amended by inserting after section 317L of such Act (42 U.S.C. 247b–13) the following: 317L–1. Stillbirth and sudden deaths in the young (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: (1) Surveillance (A) In general The Secretary shall provide for surveillance efforts to collect thorough, complete, and high-quality epidemiologic information on stillbirths, including through the utilization of existing surveillance systems (including the National Vital Statistics System (NVSS) and other appropriately equipped birth defects surveillance programs). (B) Standard protocol for surveillance The Secretary, in consultation with qualified individuals and organizations determined appropriate by the Secretary, to include representatives of health and advocacy organizations, State and local governments, public health officials, and health researchers, shall— (i) provide for the continued development and dissemination of a standard protocol for stillbirth data collection and surveillance; and (ii) not less than every 5 years, review and, as appropriate, update such protocol. (2) Postmortem data collection and evaluation The Secretary, in consultation with qualified individuals and organizations determined appropriate by the Secretary, to include representatives of health professional organizations, shall— (A) upon the enactment of this section, and not less than every 5 years thereafter, review existing guidelines for increasing and improving the quality and completeness of postmortem stillbirth evaluation and related data collection, including conducting and reimbursing autopsies, placental histopathology, and cytogenetic testing; and (B) develop strategies for implementing such guidelines and addressing any barriers to implementation of such guidelines. (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: (1) Surveillance (A) In general The Secretary shall provide for surveillance efforts to gather sociodemographic, death scene investigation, clinical history, and autopsy information on SUID cases through the 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). (B) Standard protocol for surveillance The Secretary, in consultation with qualified individuals and organizations determined appropriate by the Secretary, to include representatives of health and advocacy organizations, State and local governments, and public health officials, shall— (i) provide for the continued development and dissemination of a standard protocol for SUID data reporting and surveillance; and (ii) not less than every 5 years, review and, as appropriate, update such protocol. (C) Goals for enhancing surveillance In carrying out activities under this subsection, the Secretary shall seek to accomplish the following goals: (i) Collecting thorough, complete, and high-quality death scene investigation data, clinical history, and autopsy findings. (ii) Collecting standardized information about the environmental and medical circumstances of death (including the sleep environment and quality of the death scene investigation). (iii) Supporting multidisciplinary infant death reviews, such as those performed by child death review committees, to collect and review the information and classify and characterize SUID using a standardized classification system. (iv) Facilitating the sharing of information to improve the public reporting of surveillance and vital statistics describing the epidemiology of SUID. (2) Standard protocol for death scene investigation (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— (i) provide for the continued dissemination of a standard death scene investigation protocol; and (ii) not less than every 5 years, review and, as appropriate, update such protocol. (B) Content of Death Scene Protocol The protocol disseminated under subparagraph (A) shall include information on— (i) the current and past medical history of the infant; (ii) family medical history; (iii) the circumstances surrounding the death, including any suspicious circumstances; (iv) the sleep position and sleep environment of the infant; and (v) any accidental or environmental factors associated with death. (3) Guidelines for a standard autopsy protocol The Secretary, in consultation with the Attorney General of the United States, forensic pathologists, medical examiners, coroners, pediatric pathologists, pediatric cardiologists, pediatric neuropathologists, geneticists, infectious disease specialists, and other individuals and organizations determined appropriate by the Secretary, shall— (A) develop guidelines for a standard autopsy protocol for SUID; and (B) not less than every 5 years, review and, as appropriate, update such guidelines. (4) Training The Secretary, in consultation with the Attorney General of the United States, may— (A) conduct or support— (i) training activities for medical examiners, coroners, medicolegal death scene investigators, law enforcement personnel, and emergency medical technicians or paramedics concerning death scene investigations for SUID, including the use of standard death scene investigation protocols disseminated under paragraph (2); and (ii) training activities for medical examiners, coroners, and forensic pathologists concerning standard autopsy protocols for SUID developed under paragraph (3); and (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. (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: (1) Surveillance The Secretary, in consultation with the Director of the National Institutes of Health, shall provide for surveillance efforts to gather sociodemographic, death scene investigation, clinical history, and 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). (2) Guidelines for a standard autopsy protocol The Secretary, in consultation with the Attorney General of the United States, forensic pathologists, medical examiners, coroners, pediatric pathologists, pediatric cardiologists, pediatric neuropathologists, geneticists, infectious disease specialists, and other individuals and organizations determined appropriate by the Secretary, may— (A) develop guidelines for a standard autopsy protocol for SUDC; and (B) not less than every 5 years, review and, as appropriate, update such guidelines. (3) Review of applicability of programs and activities Not later than 18 months after the date of enactment of this section, the Secretary, acting through the Director of the Centers for Disease Control and Prevention, and in consultation with the Director of the 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. (d) Report to Congress Not later than 2 years after the 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— (1) the results of the evaluation under subsection (c)(3); and (2) a description of any activities that— (A) are being carried out by the Centers for Disease Control and Prevention in consultation with the National Institutes of Health relating to stillbirth, SUID, or SUDC; and (B) are in addition to the activities being carried out pursuant to this section. (e) Definitions In this section: (1) The term stillbirth means a spontaneous fetal death that— (A) occurs at 20 or more weeks gestation; or (B) if the age of the fetus is not known, involves a fetus weighing 350 grams or more. (2) The terms sudden unexpected infant death and SUID mean the death of an infant less than 1 year of age— (A) which occurs suddenly and unexpectedly; and (B) whose cause— (i) is not immediately obvious prior to investigation; and (ii) is either explained upon investigation or remains unexplained. (3) The terms sudden unexplained death in childhood and SUDC mean the sudden death of a child 1 year of age or older which remains unexplained after a thorough case investigation that includes— (A) a review of the clinical history and circumstances of death; and (B) performance of a complete autopsy with appropriate ancillary testing. (f) Funding No additional funds are authorized to be appropriated for the purpose of carrying out this section, and this section shall be carried out using amounts otherwise available for such purpose. .

Passed the House of Representatives September 9, 2014. Karen L. Haas, Clerk