,i #aacth ,,congress #ast ,session ,h4 ,r4 #ffi ,,in ,,the ,,house ,,of ,,representatives ,february #ac1 #bjac ,mr4 ,pallone 7for himself and ,mr4 ,king of ,new ,york7 introduced the following bill2 which was referred to the ,committee on ,energy and ,commerce ,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 life4 #a4 ,short title ,this ,act may be cited as the ,sudden ,unexpected ,death ,data ,enhancement and ,awareness ,act4 #b4 ,amendment to the ,public ,health ,service ,act ,title ,,iii of the ,public ,health ,service ,act 7#db ,u4,s4,c4 #bda et seq47 is amended by adding at the end the following3 ,w ,sudden unexpected infant death and sudden unexplained death in childhood #cii,,oo4 ,definitions ,in this part3 7#a7 ,administrator ,the term ,administrator means the ,administrator of the ,health ,resources and ,services ,administration4 7#b7 ,death scene investigator ,the term death scene investigator means an individual certified as a death scene investigator by an accredited professional certification board4 7#c7 ,director ,the term ,director means the ,director of the ,centers for ,disease ,control and ,prevention4 7#d7 ,state ,the term ,state has the meaning given to such term in section #b1 except that such term includes tribes and tribal organizations 7as such terms are defined in section #d of the ,indian ,self-,determination and ,education ,assistance ,act74 7#e7 ,sudden unexpected infant death2 ,,suid ,the terms sudden unexpected infant death and ,,suid mean the sudden death of an infant under #a year of age that when first discovered did not have an obvious cause4 ,such terms include those deaths that are later determined to be from explained as well as unexplained causes4 7#f7 ,sudden unexplained death in childhood2 ,,sudc ,the terms sudden unexplained death in childhood and ,,sudc mean the sudden death of a child older than #a 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 testing4 #cii,,oo-#a4 ,death scene investigation and autopsy 7a7 ,investigations 7#a7 ,grants ,the ,secretary1 acting through the ,director1 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 childhood4 7#b7 ,application ,to be eligible to receive a grant under paragraph 7#a71 a ,state shall submit to the ,secretary an application at such time1 in such manner1 and containing such information as the ,secretary may require4 7#c7 ,use of funds 7,a7 ,in general ,a ,state shall use amounts received under a grant under paragraph 7#a7 to improve the completion of comprehensive death scene investigations for sudden unexpected infant death and sudden unexplained death in childhood1 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 comprehensive1 standardized autopsies4 7,b7 ,protocols ,a standard death scene protocol implemented under subparagraph 7,a7 shall include the obtaining of information on current and past medical history of the infant_/child1 the circumstances surrounding the death including any suspicious circumstances1 the sleep position and sleep environment of the infant_/child1 and whether there were any accidental or environmental factors associated with the death4 ,the ,director in consultation with medical examiners1 coroners1 death scene investigators1 law enforcement1 emergency medical technicians and paramedics1 public health agencies1 and other individuals or groups determined necessary by the ,director shall develop a standard death scene protocol for children from #a to #d years of age1 using existing protocols developed for ,,suid4 7b7 ,autopsies 7#a7 ,in general ,the ,secretary1 acting through the ,director1 shall award grants to ,states to enable such ,states to increase the rate at which comprehensive1 standardized autopsies are performed for sudden unexpected infant death and sudden unexplained death in childhood4 7#b7 ,application ,to be eligible to receive a grant under paragraph 7#a71 a ,state shall submit to the ,secretary an application at such time1 in such manner1 and containing such information as the ,secretary may require4 7#c7 ,comprehensive autopsy ,for purposes of this subsection1 a comprehensive autopsy shall include a full external and internal examination1 including microscopic examination1 of all major organs and tissues including the brain1 complete radiographs1 vitreous fluid analysis1 photo documentation1 selected microbiology when indicated1 metabolic testing1 and toxicology screening of the infant or child involved4 7#d7 ,guidelines ,the ,director1 in consultation with board certified forensic pathologists1 medical examiners1 coroners1 pediatric pathologists1 pediatric cardiologists1 pediatric neuropathologists and geneticists1 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 childhood4 ,the ,director shall ensure that the majority of such consultation is with board certified forensic pathologists1 medical examiners1 and coroners4 ,the ,director is encouraged to seek additional input from child abuse experts1 bereavement specialists1 parents1 and public health agencies on nonmedical aspects of the autopsy guidelines4 ,in developing such protocol1 the ,director shall consider autopsy protocols used by ,state and local jurisdictions4 7c7 ,study on genetic testing ,the ,director1 in consultation with medical examiners1 coroners1 forensic pathologists1 geneticists1 researchers1 public health officials1 and other individuals and groups determined necessary by the ,director1 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 comprehensive1 standardized autopsy4 ,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 testing4 7d7 ,authorization of appropriations ,there is authorized to be appropriated #h1jjj1jjj for each of fiscal years #bjad through #bjah to carry out this section4 #cii,,oo-#b4 ,training 7a7 ,grants ,the ,secretary1 acting through the ,director1 shall award grants to eligible entities for the provision of training on death scene investigation specific for ,,suid and ,,sudc4 7b7 ,eligible entities ,to be eligible to receive a grant under subsection 7a71 an entity shall-- 7#a7 be-- 7,a7 a ,state or local government entity2 or 7,b7 a nonprofit private entity2 and 7#b7 submit to the ,secretary an application at such time1 in such manner1 and containing such information as the ,secretary may require4 7c7 ,use of funds ,an eligible entity shall use amounts received under a grant under this section to-- 7#a7 provide training to medical examiners1 coroners1 death scene investigators1 law enforcement personnel1 and emergency medical technicians or paramedics concerning death scene investigations for ,,suid and ,,sudc1 including the use of standard death scene investigation protocols that include information on the current and past medical history of the infant_/child1 the circumstances surrounding the death including any suspicious circumstances1 the sleep position and sleep environment of the infant_/child1 and whether there were any accidental or environmental factors associated with the death2 7#b7 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 childhood2 7#c7 provide training to multidisciplinary teams1 including teams that have a medical examiner or coroner1 death scene investigator1 law enforcement representative1 and an emergency medical technician or paramedic2 7#d7 in the case of national and ,state-based grantees that are comprised of medical examiners1 coroners1 death scene investigators1 law enforcement personnel1 or emergency medical technicians and paramedics1 integrate training under the grant on death scene investigation of ,,suid and ,,sudc into professional accreditation and training programs2 7#e7 in the case of ,state and local government entity grantees1 obtain equipment1 including computer equipment1 to aid in the completion of standard death scene investigation2 or 7#f7 conduct training activities for medical examiners1 coroners1 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 programs4 7d7 ,authorization of appropriations ,there is authorized to be appropriated to carry out this section #b1jjj1jjj for each of fiscal years #bjad through #bjah4 #cii,,oo-#c4 ,child death review 7a7 ,prevention 7#a7 ,core capacity grants ,the ,secretary1 acting through the ,administrator1 shall award grants to ,states to build and strengthen ,state capacity and implement ,state and local child death review programs and prevention strategies4 7#b7 ,planning grants ,the ,secretary1 acting through the ,administrator1 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-based1 for the development of local child death review programs and prevention strategies4 7#c7 ,application ,to be eligible to receive a grant under paragraph 7#a7 or 7#b71 a ,state shall submit to the ,secretary an application at such time1 in such manner1 and containing such information as the ,secretary may require4 7#d7 ,technical assistance ,the ,secretary1 acting through the ,administrator1 shall provide technical assistance to assist ,states-- 7,a7 in developing the capacity for comprehensive child death review programs1 including the development of best practices for the implementation of such programs2 and 7,b7 in maintaining the national child death case reporting system4 7b7 ,authorization of appropriations ,there is authorized to be appropriated #g1jjj1jjj for each of fiscal years #bjad through #bjah to carry out subsection 7a74 #cii,,oo-#d4 ,enhancing the national child death case reporting system 7a7 ,in general ,the ,secretary1 acting through the ,director and in consultation with the national child death case reporting system1 national health organizations1 and professional societies with experience and expertise relating to reducing ,,suid and ,,sudc1 shall modify such national death case reporting system1 in accordance with subsection 7b71 to assure that such system provides for population-based data for ages #j through #d years of age and facilitates the understanding of the root causes1 rates1 and trends of ,,suid and ,,sudc with respect to such ages4 7b7 ,goals of modified national child death case reporting system ,the modifications under subsection 7a7 to the national child death case reporting system shall facilitate the collection1 analysis1 and dissemination of data by-- 7#a7 implementing a surveillance and monitoring system based on thorough and complete death scene investigation data1 clinical history1 and autopsy findings2 7#b7 collecting standardized information about the environmental1 medical1 genetic1 and social circumstances of death 7including sleep environment and quality of the death scene investigation7 if determined that such may correlate with infant and early childhood deaths1 as well as information from other law enforcement1 medical examiner1 coroner1 emergency medical services 7,,ems71 medical records1 and vital records 7if possible72 7#c7 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 ,,sudc2 7#d7 facilitating the sharing of information to improve the public reporting of surveillance and vital statistics describing the epidemiology of ,,suid and ,,sudc2 and 7#e7 utilizing current infrastructure of existing surveillance systems4 7c7 ,authorization of appropriations ,there is authorized to be appropriated to carry out this section #c1jjj1jjj for each of fiscal years #bjad through #bjah4 #cii,,oo-#e4 ,public awareness and education campaign 7a7 ,establishment ,the ,secretary1 acting through the ,administrator and in consultation with the ,director and the ,director of the ,national ,institutes of ,health1 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 childhood1 including educating individuals and organizations about safe sleep environments1 sleep positions1 and reducing exposure to smoking during pregnancy and after birth4 7b7 ,targeted populations ,the campaign under subsection 7a7 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 childhood4 7c7 ,consultation ,in establishing and implementing the campaign under subsection 7a71 the ,secretary shall consult with national organizations representing health care providers1 including nurses and physicians1 parents1 child care providers1 children's advocacy and safety organizations1 maternal and child health programs and women's1 infants'1 and children's nutrition professionals1 and other individuals and groups determined necessary by the ,secretary for such establishment and implementation4 7d7 ,grants 7#a7 ,in general ,in carrying out the campaign under subsection 7a71 the ,secretary shall award grants to national organizations1 ,state and local health departments1 and community-based organizations for the conduct of education and outreach programs for health care providers1 parents1 child care providers1 public health agencies1 and community organizations4 7#b7 ,application ,to be eligible to receive a grant under paragraph 7#a71 an entity shall submit to the ,secretary an application at such time1 in such manner1 and containing such information as the ,secretary may require4 7e7 ,authorization of appropriations ,there is authorized to be appropriated to carry out this section #g1jjj1jjj for fiscal year #bjad and #e1jjj1jjj for each of fiscal years #bjae through #bjah4 #cii,,oo-#f4 ,grants for support services 7a7 ,in general ,the ,secretary1 acting through the ,administrator1 shall award grants to national organizations1 ,state and local health departments1 and community-based organizations1 for the provisions of support services to families who have had a child die of sudden unexpected infant death and sudden unexplained death in childhood4 7b7 ,application ,to be eligible to receive a grant under subsection 7a71 an entity shall submit to the ,secretary an application at such time1 in such manner1 and containing such information as the ,secretary may require4 7c7 ,use of funds ,amounts received under a grant awarded under subsection 7a7 may be used to provide grief counseling1 education1 home visits1 #bd-;hour hotlines1 and support groups for families who have lost a child to sudden unexpected infant death or sudden unexplained death in childhood4 7d7 ,preference ,in awarding grants under subsection 7a71 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 region4 7e7 ,authorization of appropriations ,there is authorized to be appropriated to carry out this section #ejj1jjj for each of fiscal years #bjad through #bjah4 #cii,,oo-#g4 ,evaluation of ,state and regional needs 7a7 ,in general ,the ,secretary1 acting through the ,director and in consultation with the ,administrator1 shall conduct a needs assessment on a ,state and regional basis of the availability of personnel1 training1 technical assistance1 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 determination4 7b7 ,authorization of appropriations ,there is authorized to be appropriated to carry out this section1 #bej1jjj for each of fiscal years #bjad through #bjah4 4 #c4 ,enhancing public health activities related to stillbirth ,part ,p of title ,,iii of the ,public ,health ,service ,act 7#db ,u4,s4,c4 #bhj;g et seq47 is amended by adding at the end the following3 #cii,v-#f4 ,enhancing public health activities related to stillbirth 7a7 ,grants ,the ,secretary1 acting through the ,director of the ,centers for ,disease ,control and ,prevention1 shall award grants to eligible ,states and metropolitan areas to enhance and expand surveillance efforts to collect thorough and complete epidemiologic information on stillbirths1 including through the utilization of the infrastructure of existing surveillance systems 7including vital statistics systems74 7b7 ,eligibility ,to be eligible to receive a grant under subsection 7a71 an entity shall-- 7#a7 be a ,state or a major metropolitan area 7as defined by the ,secretary72 and 7#b7 submit to the ,secretary an application at such time1 in such manner1 and containing such information as the ,secretary may require1 including-- 7,a7 an assurance that the applicant will implement the standardized surveillance protocol developed under subsection 7c72 and 7,b7 a description of the infrastructure of existing surveillance systems in the ,state or major metropolitan area1 as applicable4 7c7 ,surveillance protocol ,the ,secretary1 acting through the ,director of the ,centers for ,disease ,control and ,prevention1 shall-- 7#a7 provide for the continued development and dissemination of a standard protocol for stillbirth data collection and surveillance1 in consultation with representatives of health and advocacy organizations1 ,state and local governments1 and other interested entities determined appropriate by the ,secretary2 7#b7 monitor trends and identify potential risk factors for further study using existing sources of surveillance data and expanded sources of data from targeted surveillance efforts1 and methods for the evaluation of stillbirth prevention efforts2 and 7#c7 develop and evaluate methods to link existing data to provide more complete information for research into the causes and conditions associated with stillbirth4 7d7 ,postmortem evaluation and ,data ,collection ,the ,secretary1 acting through the ,director of the ,centers for ,disease ,control and ,prevention and in consultation with physicians1 nurses1 pathologists1 geneticists1 parents1 and other groups determined necessary by the ,director1 shall develop guidelines for increasing the performance and data collection of postmortem stillbirth evaluation1 including conducting and reimbursing autopsies1 placental histopathology1 and cytogenetic testing4 ,the guidelines should take into account cultural competency issues related to postmortem stillbirth evaluation4 7e7 ,public health programmatic activities related to stillbirth ,the ,secretary1 acting through the ,director of the ,centers for ,disease ,control and ,prevention1 shall-- 7#a7 develop behavioral surveys for women experiencing stillbirth1 using existing ,state-based infrastructure for pregnancy-related information gathering2 and 7#b7 increase the technical assistance provided to ,states1 ,indian tribes1 territories1 and local communities to enhance capacity for improved investigation of medical and social factors surrounding stillbirth events4 7f7 ,public education and prevention programs ,the ,secretary1 acting through the ,director of the ,centers for ,disease ,control and ,prevention and in consultation with health care providers1 public health organizations1 maternal and child health programs1 parents1 and other groups deemed necessary by the ,director1 shall directly or through grants1 cooperative agreements1 or contracts to eligible entities1 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 occurrence1 including-- 7#a7 public education programs1 services1 and demonstrations which are designed to increase general awareness of stillbirths2 and 7#b7 the development of tools for the education of health professionals and women concerning the known risk factors for stillbirth1 promotion of fetal movement awareness1 and the importance of early and regular prenatal care to monitor the health and development of the fetus up to and during delivery4 7g7 ,task force ,the ,secretary1 in consultation with the ,director of the ,national ,institutes of ,health1 the ,director of the ,centers for ,disease ,control and ,prevention1 and health care providers1 researchers1 parents1 and other groups deemed necessary by the ,directors1 shall establish a task force to develop a national research plan to determine the causes of1 and how to prevent1 stillbirth4 7h7 ,grants for support services 7#a7 ,in general ,the ,secretary1 acting through the ,administrator of the ,health ,resources and ,services ,administration1 shall award grants to national organizations1 ,state and local health departments1 and community-based organizations1 for the provisions of support services to families who have experienced stillbirth4 7#b7 ,application ,to be eligible to receive a grant under subsection 7a71 an entity shall submit to the ,secretary an application at such time1 in such manner1 and containing such information as the ,secretary may require4 7#c7 ,use of funds ,amounts received under a grant awarded under subsection 7a7 may be used to provide grief counseling1 education1 home visits1 #bd-;hour hotlines1 and support groups for families who have experienced stillbirth4 7#d7 ,preference ,in awarding grants under subsection 7a71 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 region4 7i7 ,definitions ,in this section3 7#a7 ,the term ,state has the meaning given to such term in section #b1 except that such term includes tribes and tribal organizations 7as such terms are defined in section #d of the ,indian ,self-,determination and ,education ,assistance ,act74 7#b7 ,the term stillbirth means a spontaneous1 not induced1 pregnancy loss #bj weeks or later after gestation1 or if the age of the fetus is not known1 then a fetus weighing #cej grams or more4 7j7 ,authorization of appropriations ,there is authorized to be appropriated to carry out this section1 #c1jjj1jjj for each of fiscal years #bjad through #bjah4 4 #d4 ,report to ,congress ,not later than #b years after the date of enactment of this ,act1 the ,secretary of ,health and ,human ,services1 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 ,administration1 shall submit to ,congress a report describing the progress made in implementing this ,act 7and the amendments made by this ,act74