,,ii #aaeth ,,congress #b;d ,session ,s4 #ceba ,,in ,,the ,,senate ,,of ,,the ,,united ,,states ,september #bg1 #bjah,mr4 ,casey 7for himself1 ,mr4 ,isakson1 and ,mr4 ,brown7 introduced the following bill2 which was read twice and referred to the ,committee on ,health1 ,education1 ,labor1 and ,pensions ,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 ,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 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 unexplained death in childhood2 ,,sudc ,the terms sudden unexplained death in childhood and ,,sudc mean the sudden death of a child who is #a year of age or older1 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 ,reporting ,the ,secretary1 acting through 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 as the ,director determines necessary1 shall revise the ,sudden ,unexplained ,infant ,death ,investigation ,reporting ,form of the ,centers for ,disease ,control and ,prevention and the ,child ,death ,review ,case ,reporting ,system to include doll re-enactments and scene investigation information on deaths of children younger than #e4 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 unexplained death in childhood4 7#c7 ,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#d7 ,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 or child1 the circumstances surrounding the death1 including any suspicious circumstances1 whether there were any accidental or environmental factors associated with the death1 and in the case of a sleep-related death1 the sleep position and sleep environment4 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 unexplained 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 ,,suid and ,,sudc4 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 at such time1 in such manner1 and containing such information as the ,secretary may require4 7#d7 ,comprehensive autopsy ,for purposes of this subsection1 a comprehensive autopsy1 which may include minimally invasive techniques1 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 metabolic testing1 toxicology screening1 and1 when indicated1 selected genetic and microbiology analyses of the infant or child involved4 7c7 ,study on 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 necessary1 shall commission a study to determine the benefits and appropriateness of genetic analysis 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 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 #bjah through #bjbb4 #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 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 ,,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 or child1 the circumstances surrounding the death including any suspicious circumstances1 the sleep position and sleep environment of the infant or 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 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 #bjah through #bjbb4 #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 capacity 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 that have no existing infant or child death review program or ,states in which the only infant and child death review programs are ,state-based1 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 ,infant and ,child ,death ,case ,reporting ,system4 7b7 ,authorization of appropriations ,to carry out this section1 there is authorized to be appropriated #ae1jjj1jjj for each of fiscal years #bjah through #bjbb4 #cii,,oo-#d4 ,enhancing the ,national ,infant and ,child ,death ,case ,reporting ,system 7a7 ,in general ,the ,secretary1 acting through the ,director and in consultation with the ,national ,infant and ,child ,death ,case ,reporting ,system1 national health organizations1 and professional societies with experience and expertise relating to reducing ,,suid and ,,sudc1 shall maintain current efforts of the ,national ,infant and ,child ,death ,case ,reporting ,system so as to provide population-based data on deaths occurring for children under age #e1 in order to facilitate the understanding of the root causes1 rates1 trends1 and geographic variations of ,,suid and ,,sudc with respect to such age group4 7b7 ,compilation and availability of data ,the ,secretary shall compile the data submitted under this section and make such data available to the public in a timely manner on an appropriate internet website in a format that is useful to the public and to other entities4 7c7 ,authorization of appropriations ,to carry out this section1 there is authorized to be appropriated #a1jjj1jjj for each of fiscal years #bjah through #bjbb4 #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 ,,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 a full-sized crib1 a non-full-sized crib1 or a play yard2 7#b7 provide a flat surface2 7#c7 not include a supplemental mattress or soft bedding2 and 7#d7 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 #bjah and #g1jjj1jjj for each of fiscal years #bjai through #bjbb4 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 unexplained death in childhood4 #d4 ,report to ,congress ,not later than #a year after the date of enactment of this ,act1 and annually 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 #a-year reporting period-- 7#a7 information regarding the absolute number and incidence of both sudden unexpected infant death and sudden unexplained death in childhood1 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 unexplained death in childhood2 7#b7 an assessment of the extent to which various approaches of preventing sudden unexpected infant death 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