,,ii ,calendar ,no4 #bhd #aafth ,,congress #ast ,session ,s4 #aacj ,,in ,,the ,,senate ,,of ,,the ,,united ,,states ,april #aj1 #bjai,mr4 ,casey 7for himself1 ,mr4 ,isakson1 ,mr4 ,brown1 and ,mr4 ,jones7 introduced the following bill2 which was read twice and referred to the ,committee on ,health1 ,education1 ,labor1 and ,pensions ,november #e1 #bjai,reported by ,mr4 ,alexander1 with an amendment,strike out all after the enacting clause and insert the part printed in italic ,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 ,scarlett's ,sunshine on ,sudden ,unexpected ,death ,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 ,unexpected ,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 or trained 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 ,indian 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 unexpected death in childhood ,the term sudden unexpected death in childhood means the sudden death of a child who is #a year of age or older that1 when first discovered1 did not have an obvious cause4 ,such term includes those deaths that are later determined to be from an explained cause1 and those deaths that remain unexplained after a thorough case investigation that includes a review of the clinical history and circumstances of death and performance of a comprehensive1 standardized autopsy with appropriate ancillary testing 7which are known as sudden unexplained death in childhood74 #cii,,oo-#a4 ,death scene investigation and autopsy 7a7 ,investigations 7#a7 ,reporting ,the ,secretary1 acting through the ,director1 in consultation with experts that include board-certified forensic pathologists1 medical examiners1 coroners1 pediatric pathologists1 pediatric cardiologists1 pediatric neuropathologists and geneticists1 and other individuals and groups as the ,director determines appropriate1 shall revise the ,sudden ,unexplained ,infant ,death ,investigation ,reporting ,form of the ,centers for ,disease ,control and ,prevention to include doll re-enactments and scene investigation information on sleep-related deaths of children younger than #e1 and work to align such form with the ,national ,fatality ,review ,case ,reporting ,system4 7#b7 ,grants ,the ,secretary1 acting through the ,director1 shall award grants to ,states to enable such ,states to improve the completion of comprehensive death scene investigations1 and reviews of such investigations1 for sudden unexpected infant death and sudden unexpected death in childhood4 7#c7 ,application ,to be eligible to receive a grant under paragraph 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 ,use of funds 7,a7 ,in general ,a ,state shall use amounts received under a grant under paragraph 7#b7 to improve the completion of comprehensive death scene investigations for sudden unexpected infant death and sudden unexpected death in childhood1 including through the awarding of subgrants to local jurisdictions 7which may include subgrants to medical examiners1 coroners1 and other local entities responsible for conducting autopsies7 to be used to implement standard death scene investigation protocols for sudden unexpected infant death and sudden unexpected 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-- 7i7 current and past medical history of the infant or child and1 as relevant1 the infant's or child's family2 7ii7 the circumstances surrounding the death1 including any suspicious circumstances1 whether there were any accidental or environmental factors associated with the death2 and 7iii7 in the case of a sleep-related death1 the sleep position and sleep environment of the infant or child4 7b7 ,autopsies 7#a7 ,in general ,the ,secretary1 acting through the ,director1 shall award grants to ,states and local governmental entities to enable such ,states and entities to increase the rate at which comprehensive1 standardized autopsies are performed for sudden unexpected infant death and sudden unexpected death in childhood4 7#b7 ,informed consent ,grants awarded under this subsection may be used for studies and demonstration projects to increase the rate of consent among families of deceased children for the inclusion of genetic or tissue samples collected during autopsy in registries established for the purposes of conducting research into sudden unexpected infant deaths and sudden unexpected death in childhood4 7#c7 ,application ,to be eligible to receive a grant under paragraph 7#a71 an eligible entity described in such paragraph shall submit to the ,secretary an application that includes-- 7,a7 a description of the methods to be studied or tested to increase the rate of consent among families of deceased children for the inclusion of genetic or tissue samples collected during autopsy2 7,b7 information about the governmental and nongovernmental entities with whom the eligible entity will partner2 and 7,c7 any additional information as the ,secretary may require4 7#d7 ,comprehensive autopsy ,for purposes of this subsection1 a comprehensive1 standardized autopsy includes1 as appropriate1 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 metabolic testing1 toxicology screening1 and1 when indicated1 selected genetic and microbiology analyses of the infant or child involved4 7c7 ,genetic analysis ,the ,director1 in consultation with medical examiners1 coroners1 forensic pathologists1 geneticists1 researchers1 public health officials1 and other individuals and groups as the ,director determines appropriate1 shall develop recommendations for a standard protocol for use in determining when to utilize genetic analysis1 and standard protocols for the collection and storage of specimens suitable for genetic analysis4 7d7 ,authorization of appropriations ,to carry out this section1 there is authorized to be appropriated #h1jjj1jjj for each of fiscal years #bjai through #bjbc4 #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 sudden unexpected infant death and sudden unexpected death in childhood4 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 7#b7 submit to the ,secretary an application at such time1 in such manner1 and containing such information as the ,secretary may require2 and 7#c7 make publishing training materials developed using a grant awarded under subsection 7a7 available on an internet website and at no charge to attendees of training under subsection 7c77#a74 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 justices of the peace1 emergency medical technicians1 paramedics1 or emergency department personnel concerning death scene investigations for sudden unexpected infant death and sudden unexpected death in childhood1 including the use of standard death scene investigation protocols that include information on-- 7,a7 current and past medical history of the infant or child and1 as relevant1 the infant's or child's family2 7,b7 the circumstances surrounding the death1 including any suspicious circumstances2 7,c7 whether there were any accidental or environmental factors associated with the death2 and 7,d7 in the case of a sleep-related death1 the sleep position and sleep environment of the infant or child2 7#b7 provide training directly to individuals who are responsible for conducting and reviewing death scene investigations for sudden unexpected infant death and sudden unexpected 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 sudden unexpected infant death and sudden unexpected death in childhood into professional accreditation and training programs2 or 7#e7 in the case of ,state and local government entity grantees1 obtain equipment1 including scene investigation kits1 to aid in the completion of standard death scene investigation4 7d7 ,authorization of appropriations ,to carry out this section1 there is authorized to be appropriated #b1jjj1jjj for each of fiscal years #bjai through #bjbc4 #cii,,oo-#c4 ,infant and child death review 7a7 ,prevention 7#a7 ,core capacity grants ,the ,secretary1 acting through the ,administrator and in consultation with the ,associate ,commissioner of the ,children's ,bureau of the ,administration for ,children and ,families1 shall award grants to ,states to build and strengthen ,state capacity1 and enable ,states to support local governments' capacity1 so as to review #ajj percent of all infant and child deaths1 and to develop and implement prevention strategies1 as appropriate4 7#b7 ,planning grants ,the ,secretary1 acting through the ,administrator1 shall award planning grants to ,states in which the only infant and child death review programs are statewide1 for the development of local infant and 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 infant and child death review programs1 including the development of best practices for the implementation of such programs2 and 7,b7 in maintaining the ,national ,fatality ,review ,case ,reporting ,system4 7b7 ,authorization of appropriations ,to carry out this section1 there is authorized to be appropriated #ae1jjj1jjj for each of fiscal years #bjai through #bjbc4 #cii,,oo-#d4 ,enhancing the ,national ,fatality ,review ,case ,reporting ,system 7a7 ,in general ,the ,secretary1 acting through the ,director and in consultation with the ,national ,fatality ,review ,case ,reporting ,system1 national health organizations1 and professional societies with experience and expertise relating to reducing sudden unexpected infant death and sudden unexpected death in childhood1 shall maintain current efforts of the ,national ,fatality ,review ,case ,reporting ,system so as to provide population-based data on unexpected deaths occurring for infants or children under age #ah1 in order to facilitate the understanding of the root causes1 rates1 trends1 and geographic variations of sudden unexpected infant death and sudden unexpected death in childhood4 7b7 ,compilation and availability of data ,the ,secretary shall-- 7#a7 compile the data submitted under this section2 7#b7 make summary data available to the public in a timely manner on an appropriate internet website in a format that is useful to the public2 and 7#c7 make data submitted under this section available1 in a manner that protects the privacy of individuals involved1 to individuals or entities conducting research into the causes of1 or prevention methods for1 sudden unexpected infant death and sudden unexpected death in childhood4 7c7 ,authorization of appropriations ,to carry out this section1 there is authorized to be appropriated #a1jjj1jjj for each of fiscal years #bjai through #bjbc4 #cii,,oo-#e4 ,grants to support infant safe sleep 7a7 ,in general ,the ,secretary1 acting through the ,administrator1 shall award grants to national organizations1 community-based organizations1 municipal public safety departments1 and nonprofit organizations for the provision of evidence-based approaches for educational programs1 and outreach activities focused on decreasing the risk factors that contribute to sleep-related ,,suid4 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-- 7#a7 provide outreach and education services directly to parents and families1 which-- 7,a7 may include home visits1 #bd-;hour hotlines1 internet-based educational materials1 mobile health technologies1 and social marketing campaigns2 7,b7 shall apply current safe sleep guidelines published by a professional pediatric organization2 and 7,c7 may provide safe sleep-related products to families at no cost or at reduced cost that have published1 peer-reviewed evidence to support safer sleep environments for infants through age one2 or 7#b7 build capacity in professionals working with families to support safe sleep4 7d7 ,safe-,sleep products ,any product related to safe sleep for an infant that is provided under subsection 7c77#a77;,c7 shall-- 7#a7 be in compliance with current safe sleep guidelines published by a professional pediatric organization2 7#b7 be intended for use by the infant through age one2 and 7#c7 be covered by1 and be in compliance with1 a regulation or mandatory standard promulgated by the ,consumer ,product ,safety ,commission4 7e7 ,preference ,in awarding grants under subsection 7a71 the ,secretary shall give preference to applicants that have a proven history of developing or delivering interventions for infants and families to support safe sleep1 include plans to report evidence of program outcomes1 and can demonstrate experience through collaborations and partnerships for delivering services throughout a ,state or region4 7f7 ,set-,aside ,not more than #e percent of the amount of funds appropriated to carry out this section may be used to conduct research into the behavioral risks that lead to unsafe sleep practices and ways to mitigate those risks4 7g7 ,authorization of appropriations ,to carry out this section1 there is authorized to be appropriated #e1jjj1jjj for fiscal year #bjai and #g1jjj1jjj for each of fiscal years #bjbj through #bjbc4 4 #c4 ,sense of ,congress ,it is the sense of ,congress that additional research is needed to improve the understanding of the epidemiology of sudden unexpected infant and childhood deaths that remain unexplained following a comprehensive1 standardized autopsy and appropriate ancillary testing4 #d4 ,report to ,congress ,not later than #a year after the date of enactment of this ,act1 and biennially thereafter1 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 the ,committee on ,health1 ,education1 ,labor1 and ,pensions of the ,senate and the ,committee on ,energy and ,commerce of the ,house of ,representatives a report that contains1 with respect to the preceding reporting period-- 7#a7 information regarding the absolute number and incidence of sudden unexpected infant death1 the absolute number and incidence of sudden unexpected death in childhood1 information about the number of such infant and child deaths that remain unexplained1 information about such conditions by racial and ethnic groups1 information about such conditions by ,state1 aggregate information obtained from death scene investigations and autopsies1 and recommendations for reducing the incidence of sudden unexpected infant death and sudden unexpected death in childhood2 7#b7 an assessment of the extent to which various approaches of preventing sudden unexpected infant death and sudden unexpected death in childhood have been effective2 7#c7 a description of the activities carried out under part ,w of title ,,iii of the ,public ,health ,service ,act 7as added by section #b72 and 7#d7 any recommendations of the ,secretary regarding such part ,w4 #a4 ,short title ,this ,act may be cited as the ,scarlett's ,sunshine on ,sudden ,unexpected ,death ,act4 #b4 ,amendment to the ,public ,health ,service ,act ,part ,b of title ,,xi of the ,public ,health ,service ,act 7#db ,u4,s4,c4 #bda et seq47 is amended-- 7#a7 in the part heading1 by striking ,sudden infant death syndrome and inserting ,sudden unexpected infant death1 sudden infant death syndrome1 and sudden unexpected death in childhood2 and 7#b7 by inserting before section #aabb the following3 #aaba4 ,addressing sudden unexpected infant death and sudden unexpected death in childhood 7a7 ,in general ,the ,secretary may develop1 support1 or maintain programs or activities to address sudden unexpected infant death and sudden unexpected death in childhood1 including by-- 7#a7 continuing to support the ,sudden ,unexpected ,infant ,death and ,sudden ,death in the ,young ,case ,registry of the ,centers for ,disease ,control and ,prevention and other fatality case reporting systems that include data pertaining to sudden unexpected infant death and sudden unexpected death in childhood1 as appropriate1 including such systems supported by the ,health ,resources and ,services ,administration1 in order to-- 7,a7 increase the number of ,states and jurisdictions participating in such registries or systems2 and 7,b7 improve the utility of such registries or systems1 which may include-- 7i7 making summary data available to the public in a timely manner on the internet website of the ,department of ,health and ,human ,services1 in a manner that1 at a minimum1 protects personal privacy to the extent required by applicable ,federal and ,state law2 and 7ii7 making the data submitted to such registries or systems available to researchers1 in a manner that1 at a minimum1 protects personal privacy to the extent required by applicable ,federal and ,state law2 and 7#b7 awarding grants or cooperative agreements to ,states1 ,indian ,tribes1 and ,tribal organizations for purposes of-- 7,a7 supporting fetal and infant mortality and child death review programs for sudden unexpected infant death and sudden unexpected death in childhood1 including by establishing such programs at the local level2 7,b7 improving data collection related to sudden unexpected infant death and sudden unexpected death in childhood1 including by-- 7i7 improving the completion of death scene investigations and comprehensive autopsies that include a review of clinical history and circumstances of death with appropriate ancillary testing2 and 7ii7 training medical examiners1 coroners1 death scene investigators1 law enforcement personnel1 emergency medical technicians1 paramedics1 emergency department personnel1 and others who perform death scene investigations with respect to the deaths of infants and children1 as appropriate2 7,c7 identifying1 developing1 and implementing best practices to reduce or prevent sudden unexpected infant death and sudden unexpected death in childhood1 including practices to reduce sleep-related infant deaths2 7,d7 increasing the voluntary inclusion1 in registries established for the purpose of conducting research on sudden unexpected infant death and sudden unexpected death in childhood1 of samples of tissues or genetic materials from autopsies that have been collected pursuant to ,federal or ,state law2 or 7,e7 disseminating information and materials to health care professionals and the public on risk factors that contribute to sudden unexpected infant death and sudden unexpected death in childhood1 which may include information on risk factors that contribute to sleep-related sudden unexpected infant death or sudden unexpected death in childhood4 7b7 ,application ,to be eligible to receive a grant or cooperative agreement under subsection 7a77#b71 a ,state1 ,indian ,tribe1 or ,tribal organization shall submit to the ,secretary an application at such time1 in such manner1 and containing such information as the ,secretary may require1 including information on how such ,state will ensure activities conducted under this section are coordinated with other federally-funded programs to reduce infant mortality1 as appropriate4 7c7 ,technical assistance ,the ,secretary shall provide technical assistance to ,states1 ,tribes1 and ,tribal organizations receiving a grant or cooperative agreement under subsection 7a77#b7 for purposes of carrying out the program in accordance with this section4 7d7 ,reporting forms 7#a7 ,in general ,the ,secretary shall1 as appropriate1 encourage the use of sudden unexpected infant death and sudden unexpected death in childhood reporting forms developed in collaboration with the ,centers for ,disease ,control and ,prevention to improve the quality of data submitted to the ,sudden ,unexpected ,infant ,death and ,sudden ,death in the ,young ,case ,registry1 and other fatality case reporting systems that include data pertaining to sudden unexpected infant death and sudden unexpected death in childhood4 7#b7 ,update of forms ,the ,secretary shall assess whether updates are needed to the sudden unexpected infant death investigation reporting form used by the ,centers for ,disease ,control and ,prevention in order to improve the use of such form with other fatality case reporting systems supported by the ,department of ,health and ,human ,services1 and shall make such updates as appropriate4 7e7 ,definitions ,in this section3 7#a7 ,sudden infant death syndrome ,the term sudden infant death syndrome means a sudden unexpected infant death that remains unexplained after a thorough case investigation4 7#b7 ,sudden unexpected infant death ,the term sudden unexpected infant death means the sudden death of an infant under #a year of age that when first discovered did not have an obvious cause4 ,such term includes such deaths that are explained1 as well as deaths that remain unexplained 7which are known as sudden infant death syndrome74 7#c7 ,sudden unexpected death in childhood ,the term sudden unexpected death in childhood means the sudden death of a child who is at least #a year of age but not more than #ag years of age that1 when first discovered1 did not have an obvious cause4 ,such term includes such deaths that are explained1 as well as deaths that remain unexplained 7which are known as sudden unexplained death in childhood74 7#d7 ,sudden unexplained death in childhood ,the term sudden unexplained death in childhood means a sudden unexpected death in childhood that remains unexplained after a thorough case investigation4 7f7 ,authorization of appropriations ,for the purpose of carrying out this section1 there are authorized to be appropriated such sums as may be necessary for each of fiscal years #bjbj through #bjbd4 4 #c4 ,report to ,congress 7a7 ,in general ,not later than #b years after the date of enactment of this ,act and biennially thereafter1 the ,secretary of ,health and ,human ,services shall submit to the ,committee on ,health1 ,education1 ,labor1 and ,pensions of the ,senate and the ,committee on ,energy and ,commerce of the ,house of ,representatives a report that contains1 with respect to the reporting period-- 7#a7 information regarding the incidence and number of sudden unexpected infant death and sudden unexpected death in childhood 7including the number of such infant and child deaths that remain unexplained after investigation71 including1 to the extent practicable-- 7,a7 a summary of such information by racial and ethnic group1 and by ,state2 7,b7 aggregate information obtained from death scene investigations and autopsies2 and 7,c7 recommendations for reducing the incidence of sudden unexpected infant death and sudden unexpected death in childhood2 7#b7 an assessment of the extent to which various approaches of reducing and preventing sudden unexpected infant death and sudden unexpected death in childhood have been effective2 and 7#c7 a description of the activities carried out under section #aaba of the ,public ,health ,service ,act 7as added by section #b74 7b7 ,definitions ,in this section1 the terms sudden unexpected infant death and sudden unexpected death in childhood have the meanings given such terms in section #aaba of the ,public ,health ,service ,act 7as added by section #b74 ,november #e1 #bjai,reported with an amendment