II 

116TH CONGRESS 

1ST SESSION S. 1130 

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. 

IN THE SENATE OF THE UNITED STATES 

APRIL 10, 2019 

Mr. CASEY (for himself, Mr. ISAKSON, Mr. BROWN, and Mr. JONES) introduced the following bill; which was read twice and referred to the Committee on Health, Education, Labor, 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 

life. 

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled, 

3 SECTION 1. SHORT TITLE. 

4 This Act may be cited as the ‘‘Scarlett’s Sunshine 

5 on Sudden Unexpected Death Act’’. 


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1 SEC. 2. AMENDMENT TO THE PUBLIC HEALTH SERVICE 

2 ACT. 

3 Title III of the Public Health Service Act (42 U.S.C. 

4 241 et seq.) is amended by adding at the end the fol5 lowing: 

6 ‘‘PART W—SUDDEN UNEXPECTED INFANT DEATH 

7 AND SUDDEN UNEXPECTED DEATH IN 

8 CHILDHOOD 

9 ‘‘SEC. 399OO. DEFINITIONS. 

10 ‘‘In this part: 

11 ‘‘(1) ADMINISTRATOR.—The term ‘Adminis12 trator’ means the Administrator of the Health Re13 sources and Services Administration. 

14 ‘‘(2) DEATH SCENE INVESTIGATOR.—The term 

15 ‘death scene investigator’ means an individual cer16 tified or trained as a death scene investigator by an 

17 accredited professional certification board. 

18 ‘‘(3) DIRECTOR.—The term ‘Director’ means 

19 the Director of the Centers for Disease Control and 

20 Prevention. 

21 ‘‘(4) STATE.—The term ‘State’ has the mean22 ing given to such term in section 2, except that such 

23 term includes Indian tribes and tribal organizations 

24 (as such terms are defined in section 4 of the Indian 

25 Self-Determination and Education Assistance Act). 


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1 ‘‘(5) SUDDEN UNEXPECTED INFANT DEATH; 

2 SUID.—The terms ‘sudden unexpected infant death’ 

3 and ‘SUID’ mean the sudden death of an infant 

4 under 1 year of age that when first discovered did 

5 not have an obvious cause. Such terms include those 

6 deaths that are later determined to be from ex7 plained as well as unexplained causes. 

8 ‘‘(6) SUDDEN UNEXPECTED DEATH IN CHILD9 HOOD.—The term ‘sudden unexpected death in 

10 childhood’ means the sudden death of a child who is 

11 1 year of age or older that, when first discovered, 

12 did not have an obvious cause. Such term includes 

13 those deaths that are later determined to be from an 

14 explained cause, and those deaths that remain unex15 plained after a thorough case investigation that in16 cludes a review of the clinical history and cir17 cumstances of death and performance of a com18 prehensive, standardized autopsy with appropriate 

19 ancillary testing (which are known as ‘sudden unex20 plained death in childhood’). 

21 ‘‘SEC. 399OO–1. DEATH SCENE INVESTIGATION AND AU22 TOPSY. 

23 ‘‘(a) INVESTIGATIONS.— 

24 ‘‘(1) REPORTING.—The Secretary, acting 

25 through the Director, in consultation with experts 


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1 that include board-certified forensic pathologists, 

2 medical examiners, coroners, pediatric pathologists, 

3 pediatric cardiologists, pediatric neuropathologists 

4 and geneticists, and other individuals and groups as 

5 the Director determines appropriate, shall revise the 

6 Sudden Unexplained Infant Death Investigation Re7 porting Form of the Centers for Disease Control and 

8 Prevention to include doll re-enactments and scene 

9 investigation information on sleep-related deaths of 

10 children younger than 5, and work to align such 

11 form with the National Fatality Review Case Re12 porting System. 

13 ‘‘(2) GRANTS.—The Secretary, acting through 

14 the Director, shall award grants to States to enable 

15 such States to improve the completion of comprehen16 sive death scene investigations, and reviews of such 

17 investigations, for sudden unexpected infant death 

18 and sudden unexpected death in childhood. 

19 ‘‘(3) APPLICATION.—To be eligible to receive a 

20 grant under paragraph (2), a State shall submit to 

21 the Secretary an application at such time, in such 

22 manner, and containing such information as the Sec23 retary may require. 

24 ‘‘(4) USE OF FUNDS.— 


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1 ‘‘(A) IN GENERAL.—A State shall use 

2 amounts received under a grant under para3 graph (2) to improve the completion of com4 prehensive death scene investigations for sud5 den unexpected infant death and sudden unex6 pected death in childhood, including through 

7 the awarding of subgrants to local jurisdictions 

8 (which may include subgrants to medical exam9 iners, coroners, and other local entities respon10 sible for conducting autopsies) to be used to im11 plement standard death scene investigation pro12 tocols for sudden unexpected infant death and 

13 sudden unexpected death in childhood and con14 duct comprehensive, standardized autopsies. 

15 ‘‘(B) PROTOCOLS.—A standard death 

16 scene protocol implemented under subparagraph 

17 (A) shall include the obtaining of information 

18 on— 

19 ‘‘(i) current and past medical history 

20 of the infant or child and, as relevant, the 

21 infant’s or child’s family; 

22 ‘‘(ii) the circumstances surrounding 

23 the death, including any suspicious cir24 cumstances, whether there were any acciVerDate Sep 11 2014 00:32 Apr 19, 2019 Jkt 089200 PO 00000 Frm 00005 Fmt 6652 Sfmt 6201 E:\BILLS\S1130.IS S1130

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1 dental or environmental factors associated 

2 with the death; and 

3 ‘‘(iii) in the case of a sleep-related 

4 death, the sleep position and sleep environ5 ment of the infant or child. 

6 ‘‘(b) AUTOPSIES.— 

7 ‘‘(1) IN GENERAL.—The Secretary, acting 

8 through the Director, shall award grants to States 

9 and local governmental entities to enable such States 

10 and entities to increase the rate at which com11 prehensive, standardized autopsies are performed for 

12 sudden unexpected infant death and sudden unex13 pected death in childhood. 

14 ‘‘(2) INFORMED CONSENT.—Grants awarded 

15 under this subsection may be used for studies and 

16 demonstration projects to increase the rate of con17 sent among families of deceased children for the in18 clusion of genetic or tissue samples collected during 

19 autopsy in registries established for the purposes of 

20 conducting research into sudden unexpected infant 

21 deaths and sudden unexpected death in childhood. 

22 ‘‘(3) APPLICATION.—To be eligible to receive a 

23 grant under paragraph (1), an eligible entity de24 scribed in such paragraph shall submit to the Sec25 retary an application that includes— 


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1 ‘‘(A) a description of the methods to be 

2 studied or tested to increase the rate of consent 

3 among families of deceased children for the in4 clusion of genetic or tissue samples collected 

5 during autopsy; 

6 ‘‘(B) information about the governmental 

7 and nongovernmental entities with whom the el8 igible entity will partner; and 

9 ‘‘(C) any additional information as the 

10 Secretary may require. 

11 ‘‘(4) COMPREHENSIVE AUTOPSY.—For purposes 

12 of this subsection, a comprehensive, standardized au13 topsy includes, as appropriate, a full external and in14 ternal examination, including microscopic examina15 tion, of all major organs and tissues including the 

16 brain, complete radiographs, vitreous fluid analysis, 

17 photo documentation, metabolic testing, toxicology 

18 screening, and, when indicated, selected genetic and 

19 microbiology analyses of the infant or child involved. 

20 ‘‘(c) GENETIC ANALYSIS.—The Director, in consulta21 tion with medical examiners, coroners, forensic patholo22 gists, geneticists, researchers, public health officials, and 

23 other individuals and groups as the Director determines 

24 appropriate, shall develop recommendations for a standard 

25 protocol for use in determining when to utilize genetic 


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1 analysis, and standard protocols for the collection and 

2 storage of specimens suitable for genetic analysis. 

3 ‘‘(d) AUTHORIZATION OF APPROPRIATIONS.—To 

4 carry out this section, there is authorized to be appro5 priated $8,000,000 for each of fiscal years 2019 through 

6 2023. 

7 ‘‘SEC. 399OO–2. TRAINING. 

8 ‘‘(a) GRANTS.—The Secretary, acting through the 

9 Director, shall award grants to eligible entities for the pro10 vision of training on death scene investigation specific for 

11 sudden unexpected infant death and sudden unexpected 

12 death in childhood. 

13 ‘‘(b) ELIGIBLE ENTITIES.—To be eligible to receive 

14 a grant under subsection (a), an entity shall— 

15 ‘‘(1) be— 

16 ‘‘(A) a State or local government entity; or 

17 ‘‘(B) a nonprofit private entity; 

18 ‘‘(2) submit to the Secretary an application at 

19 such time, in such manner, and containing such in20 formation as the Secretary may require; and 

21 ‘‘(3) make publishing training materials devel22 oped using a grant awarded under subsection (a) 

23 available on an internet website and at no charge to 

24 attendees of training under subsection (c)(1). 


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1 ‘‘(c) USE OF FUNDS.—An eligible entity shall use 

2 amounts received under a grant under this section to— 

3 ‘‘(1) provide training to medical examiners, 

4 coroners, death scene investigators, law enforcement 

5 personnel, justices of the peace, emergency medical 

6 technicians, paramedics, or emergency department 

7 personnel concerning death scene investigations for 

8 sudden unexpected infant death and sudden unex9 pected death in childhood, including the use of 

10 standard death scene investigation protocols that in11 clude information on— 

12 ‘‘(A) current and past medical history of 

13 the infant or child and, as relevant, the infant’s 

14 or child’s family; 

15 ‘‘(B) the circumstances surrounding the 

16 death, including any suspicious circumstances; 

17 ‘‘(C) whether there were any accidental or 

18 environmental factors associated with the death; 

19 and 

20 ‘‘(D) in the case of a sleep-related death, 

21 the sleep position and sleep environment of the 

22 infant or child; 

23 ‘‘(2) provide training directly to individuals who 

24 are responsible for conducting and reviewing death 


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1 scene investigations for sudden unexpected infant 

2 death and sudden unexpected death in childhood; 

3 ‘‘(3) provide training to multidisciplinary teams, 

4 including teams that have a medical examiner or 

5 coroner, death scene investigator, law enforcement 

6 representative, and an emergency medical technician 

7 or paramedic; 

8 ‘‘(4) in the case of national and State-based 

9 grantees that are comprised of medical examiners, 

10 coroners, death scene investigators, law enforcement 

11 personnel, or emergency medical technicians and 

12 paramedics, integrate training under the grant on 

13 death scene investigation of sudden unexpected in14 fant death and sudden unexpected death in child15 hood into professional accreditation and training 

16 programs; or 

17 ‘‘(5) in the case of State and local government 

18 entity grantees, obtain equipment, including scene 

19 investigation kits, to aid in the completion of stand20 ard death scene investigation. 

21 ‘‘(d) AUTHORIZATION OF APPROPRIATIONS.—To 

22 carry out this section, there is authorized to be appro23 priated $2,000,000 for each of fiscal years 2019 through 

24 2023. 


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1 ‘‘SEC. 399OO–3. INFANT AND CHILD DEATH REVIEW. 

2 ‘‘(a) PREVENTION.— 

3 ‘‘(1) CORE CAPACITY GRANTS.—The Secretary, 

4 acting through the Administrator and in consulta5 tion with the Associate Commissioner of the Chil6 dren’s Bureau of the Administration for Children 

7 and Families, shall award grants to States to build 

8 and strengthen State capacity, and enable States to 

9 support local governments’ capacity, so as to review 

10 100 percent of all infant and child deaths, and to 

11 develop and implement prevention strategies, as ap12 propriate. 

13 ‘‘(2) PLANNING GRANTS.—The Secretary, act14 ing through the Administrator, shall award planning 

15 grants to States in which the only infant and child 

16 death review programs are statewide, for the devel17 opment of local infant and child death review pro18 grams and prevention strategies. 

19 ‘‘(3) APPLICATION.—To be eligible to receive a 

20 grant under paragraph (1) or (2), a State shall sub21 mit to the Secretary an application at such time, in 

22 such manner, and containing such information as 

23 the Secretary may require. 

24 ‘‘(4) TECHNICAL ASSISTANCE.—The Secretary, 

25 acting through the Administrator, shall provide tech26 nical assistance to assist States— 


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1 ‘‘(A) in developing the capacity for com2 prehensive infant and child death review pro3 grams, including the development of best prac4 tices for the implementation of such programs; 

5 and 

6 ‘‘(B) in maintaining the National Fatality 

7 Review Case Reporting System. 

8 ‘‘(b) AUTHORIZATION OF APPROPRIATIONS.—To 

9 carry out this section, there is authorized to be appro10 priated $15,000,000 for each of fiscal years 2019 through 

11 2023. 

12 ‘‘SEC. 399OO–4. ENHANCING THE NATIONAL FATALITY RE13 VIEW CASE REPORTING SYSTEM. 

14 ‘‘(a) IN GENERAL.—The Secretary, acting through 

15 the Director and in consultation with the National Fatal16 ity Review Case Reporting System, national health organi17 zations, and professional societies with experience and ex18 pertise relating to reducing sudden unexpected infant 

19 death and sudden unexpected death in childhood, shall 

20 maintain current efforts of the National Fatality Review 

21 Case Reporting System so as to provide population-based 

22 data on unexpected deaths occurring for infants or chil23 dren under age 18, in order to facilitate the understanding 

24 of the root causes, rates, trends, and geographic variations 


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1 of sudden unexpected infant death and sudden unexpected 

2 death in childhood. 

3 ‘‘(b) COMPILATION AND AVAILABILITY OF DATA.— 

4 The Secretary shall— 

5 ‘‘(1) compile the data submitted under this sec6 tion; 

7 ‘‘(2) make summary data available to the public 

8 in a timely manner on an appropriate internet 

9 website in a format that is useful to the public; and 

10 ‘‘(3) make data submitted under this section 

11 available, in a manner that protects the privacy of 

12 individuals involved, to individuals or entities con13 ducting research into the causes of, or prevention 

14 methods for, sudden unexpected infant death and 

15 sudden unexpected death in childhood. 

16 ‘‘(c) AUTHORIZATION OF APPROPRIATIONS.—To 

17 carry out this section, there is authorized to be appro18 priated $1,000,000 for each of fiscal years 2019 through 

19 2023. 

20 ‘‘SEC. 399OO–5. GRANTS TO SUPPORT INFANT SAFE SLEEP. 

21 ‘‘(a) IN GENERAL.—The Secretary, acting through 

22 the Administrator, shall award grants to national organi23 zations, community-based organizations, municipal public 

24 safety departments, and nonprofit organizations for the 

25 provision of evidence-based approaches for educational 


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1 programs, and outreach activities focused on decreasing 

2 the risk factors that contribute to sleep-related SUID. 

3 ‘‘(b) APPLICATION.—To be eligible to receive a grant 

4 under subsection (a), an entity shall submit to the Sec5 retary an application at such time, in such manner, and 

6 containing such information as the Secretary may require. 

7 ‘‘(c) USE OF FUNDS.—Amounts received under a 

8 grant awarded under subsection (a) may be used to— 

9 ‘‘(1) provide outreach and education services di10 rectly to parents and families, which— 

11 ‘‘(A) may include home visits, 24-hour hot12 lines, internet-based educational materials, mo13 bile health technologies, and social marketing 

14 campaigns; 

15 ‘‘(B) shall apply current safe sleep guide16 lines published by a professional pediatric orga17 nization; and 

18 ‘‘(C) may provide safe sleep-related prod19 ucts to families at no cost or at reduced cost 

20 that have published, peer-reviewed evidence to 

21 support safer sleep environments for infants 

22 through age one; or 

23 ‘‘(2) build capacity in professionals working 

24 with families to support safe sleep. 


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1 ‘‘(d) SAFE-SLEEP PRODUCTS.—Any product related 

2 to safe sleep for an infant that is provided under sub3 section (c)(1)(C) shall— 

4 ‘‘(1) be in compliance with current safe sleep 

5 guidelines published by a professional pediatric orga6 nization; 

7 ‘‘(2) be intended for use by the infant through 

8 age one; and 

9 ‘‘(3) be covered by, and be in compliance with, 

10 a regulation or mandatory standard promulgated by 

11 the Consumer Product Safety Commission. 

12 ‘‘(e) PREFERENCE.—In awarding grants under sub13 section (a), the Secretary shall give preference to appli14 cants that have a proven history of developing or deliv15 ering interventions for infants and families to support safe 

16 sleep, include plans to report evidence of program out17 comes, and can demonstrate experience through collabora18 tions and partnerships for delivering services throughout 

19 a State or region. 

20 ‘‘(f) SET-ASIDE.—Not more than 5 percent of the 

21 amount of funds appropriated to carry out this section 

22 may be used to conduct research into the behavioral risks 

23 that lead to unsafe sleep practices and ways to mitigate 

24 those risks. 


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1 ‘‘(g) AUTHORIZATION OF APPROPRIATIONS.—To 

2 carry out this section, there is authorized to be appro3 priated $5,000,000 for fiscal year 2019 and $7,000,000 

4 for each of fiscal years 2020 through 2023.’’. 

5 SEC. 3. SENSE OF CONGRESS. 

6 It is the sense of Congress that additional research 

7 is needed to improve the understanding of the epidemi8 ology of sudden unexpected infant and childhood deaths 

9 that remain unexplained following a comprehensive, stand10 ardized autopsy and appropriate ancillary testing. 

11 SEC. 4. REPORT TO CONGRESS. 

12 Not later than 1 year after the date of enactment 

13 of this Act, and biennially thereafter, the Secretary of 

14 Health and Human Services, acting through the Director 

15 of the Centers for Disease Control and Prevention and in 

16 consultation with the Director of the National Institutes 

17 of Health and the Administrator of the Health Resources 

18 and Services Administration, shall submit to the Com19 mittee on Health, Education, Labor, and Pensions of the 

20 Senate and the Committee on Energy and Commerce of 

21 the House of Representatives a report that contains, with 

22 respect to the preceding reporting period— 

23 (1) information regarding the absolute number 

24 and incidence of sudden unexpected infant death, 

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1 pected death in childhood, information about the 

2 number of such infant and child deaths that remain 

3 unexplained, information about such conditions by 

4 racial and ethnic groups, information about such 

5 conditions by State, aggregate information obtained 

6 from death scene investigations and autopsies, and 

7 recommendations for reducing the incidence of sud8 den unexpected infant death and sudden unexpected 

9 death in childhood; 

10 (2) an assessment of the extent to which var11 ious approaches of preventing sudden unexpected in12 fant death and sudden unexpected death in child13 hood have been effective; 

14 (3) a description of the activities carried out 

15 under part W of title III of the Public Health Serv16 ice Act (as added by section 2); and 

17 (4) any recommendations of the Secretary re18 garding such part W. 

Æ 


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