II 

Calendar No. 284 

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 

NOVEMBER 5, 2019 

Reported by Mr. ALEXANDER, 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 

life. 

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


kjohnson on DSK79L0C42 with BILLS
2 

•S 1130 RS

1 SECTION 1. SHORT TITLE. 

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

3 on Sudden Unexpected Death Act’’. 

4 SEC. 2. AMENDMENT TO THE PUBLIC HEALTH SERVICE 

5 ACT. 

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

7 241 et seq.) is amended by adding at the end the fol8 lowing: 

9 ‘‘PART W—SUDDEN UNEXPECTED INFANT DEATH 

10 AND SUDDEN UNEXPECTED DEATH IN 

11 CHILDHOOD 

12 ‘‘SEC. 399OO. DEFINITIONS. 

13 ‘‘In this part: 

14 ‘‘(1) ADMINISTRATOR.—The term ‘Adminis15 trator’ means the Administrator of the Health Re16 sources and Services Administration. 

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

18 ‘death scene investigator’ means an individual cer19 tified or trained as a death scene investigator by an 

20 accredited professional certification board. 

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

22 the Director of the Centers for Disease Control and 

23 Prevention. 

24 ‘‘(4) STATE.—The term ‘State’ has the mean25 ing given to such term in section 2, except that such 

26 term includes Indian tribes and tribal organizations 


kjohnson on DSK79L0C42 with BILLS
3 

•S 1130 RS

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

2 Self-Determination and Education Assistance Act). 

3 ‘‘(5) SUDDEN UNEXPECTED INFANT DEATH; 

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

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

6 under 1 year of age that when first discovered did 

7 not have an obvious cause. Such terms include those 

8 deaths that are later determined to be from ex9 plained as well as unexplained causes. 

10 ‘‘(6) SUDDEN UNEXPECTED DEATH IN CHILD11 HOOD.—The term ‘sudden unexpected death in 

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

13 1 year of age or older that, when first discovered, 

14 did not have an obvious cause. Such term includes 

15 those deaths that are later determined to be from an 

16 explained cause, and those deaths that remain unex17 plained after a thorough case investigation that in18 cludes a review of the clinical history and cir19 cumstances of death and performance of a com20 prehensive, standardized autopsy with appropriate 

21 ancillary testing (which are known as ‘sudden unex22 plained death in childhood’). 

23 ‘‘SEC. 399OO–1. DEATH SCENE INVESTIGATION AND AU24 TOPSY. 

25 ‘‘(a) INVESTIGATIONS.— 


kjohnson on DSK79L0C42 with BILLS
4 

•S 1130 RS

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

2 through the Director, in consultation with experts 

3 that include board-certified forensic pathologists, 

4 medical examiners, coroners, pediatric pathologists, 

5 pediatric cardiologists, pediatric neuropathologists 

6 and geneticists, and other individuals and groups as 

7 the Director determines appropriate, shall revise the 

8 Sudden Unexplained Infant Death Investigation Re9 porting Form of the Centers for Disease Control and 

10 Prevention to include doll re-enactments and scene 

11 investigation information on sleep-related deaths of 

12 children younger than 5, and work to align such 

13 form with the National Fatality Review Case Re14 porting System. 

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

16 the Director, shall award grants to States to enable 

17 such States to improve the completion of comprehen18 sive death scene investigations, and reviews of such 

19 investigations, for sudden unexpected infant death 

20 and sudden unexpected death in childhood. 

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

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

23 the Secretary an application at such time, in such 

24 manner, and containing such information as the Sec25 retary may require. 


kjohnson on DSK79L0C42 with BILLS
5 

•S 1130 RS

1 ‘‘(4) USE OF FUNDS.— 

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

3 amounts received under a grant under para4 graph (2) to improve the completion of com5 prehensive death scene investigations for sud6 den unexpected infant death and sudden unex7 pected death in childhood, including through 

8 the awarding of subgrants to local jurisdictions 

9 (which may include subgrants to medical exam10 iners, coroners, and other local entities respon11 sible for conducting autopsies) to be used to im12 plement standard death scene investigation pro13 tocols for sudden unexpected infant death and 

14 sudden unexpected death in childhood and con15 duct comprehensive, standardized autopsies. 

16 ‘‘(B) PROTOCOLS.—A standard death 

17 scene protocol implemented under subparagraph 

18 (A) shall include the obtaining of information 

19 on— 

20 ‘‘(i) current and past medical history 

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

22 infant’s or child’s family; 

23 ‘‘(ii) the circumstances surrounding 

24 the death, including any suspicious cir25 cumstances, whether there were any acciVerDate Sep 11 2014 21:49 Nov 05, 2019 Jkt 099200 PO 00000 Frm 00005 Fmt 6652 Sfmt 6401 E:\BILLS\S1130.RS S1130

kjohnson on DSK79L0C42 with BILLS
6 

•S 1130 RS

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— 


kjohnson on DSK79L0C42 with BILLS
7 

•S 1130 RS

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 


kjohnson on DSK79L0C42 with BILLS
8 

•S 1130 RS

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). 


kjohnson on DSK79L0C42 with BILLS
9 

•S 1130 RS

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 


kjohnson on DSK79L0C42 with BILLS
10 

•S 1130 RS

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. 


kjohnson on DSK79L0C42 with BILLS
11 

•S 1130 RS

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— 


kjohnson on DSK79L0C42 with BILLS
12 

•S 1130 RS

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 


kjohnson on DSK79L0C42 with BILLS
13 

•S 1130 RS

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 


kjohnson on DSK79L0C42 with BILLS
14 

•S 1130 RS

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. 


kjohnson on DSK79L0C42 with BILLS
15 

•S 1130 RS

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. 


kjohnson on DSK79L0C42 with BILLS
16 

•S 1130 RS

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, 

25 the absolute number and incidence of sudden unexVerDate Sep 11 2014 21:49 Nov 05, 2019 Jkt 099200 PO 00000 Frm 00016 Fmt 6652 Sfmt 6401 E:\BILLS\S1130.RS S1130

kjohnson on DSK79L0C42 with BILLS
17 

•S 1130 RS

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. 

19 SECTION 1. SHORT TITLE. 

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

21 Sudden Unexpected Death Act’’. 

22 SEC. 2. AMENDMENT TO THE PUBLIC HEALTH SERVICE ACT. 

23 Part B of title XI of the Public Health Service Act 

24 (42 U.S.C. 241 et seq.) is amended— 


kjohnson on DSK79L0C42 with BILLS
18 

•S 1130 RS

1 (1) in the part heading, by striking ‘‘SUDDEN

2 INFANT DEATH SYNDROME’’ and inserting ‘‘SUD3 DEN UNEXPECTED INFANT DEATH, SUDDEN IN4 FANT DEATH SYNDROME, AND SUDDEN UNEX5 PECTED DEATH IN CHILDHOOD’’; and 

6 (2) by inserting before section 1122 the following: 

7 ‘‘SEC. 1121. ADDRESSING SUDDEN UNEXPECTED INFANT 

8 DEATH AND SUDDEN UNEXPECTED DEATH IN 

9 CHILDHOOD. 

10 ‘‘(a) IN GENERAL.—The Secretary may develop, sup11 port, or maintain programs or activities to address sudden 

12 unexpected infant death and sudden unexpected death in 

13 childhood, including by— 

14 ‘‘(1) continuing to support the Sudden Unex15 pected Infant Death and Sudden Death in the Young 

16 Case Registry of the Centers for Disease Control and 

17 Prevention and other fatality case reporting systems 

18 that include data pertaining to sudden unexpected in19 fant death and sudden unexpected death in childhood, 

20 as appropriate, including such systems supported by 

21 the Health Resources and Services Administration, in 

22 order to— 

23 ‘‘(A) increase the number of States and ju24 risdictions participating in such registries or 

25 systems; and 


kjohnson on DSK79L0C42 with BILLS
19 

•S 1130 RS

1 ‘‘(B) improve the utility of such registries 

2 or systems, which may include— 

3 ‘‘(i) making summary data available 

4 to the public in a timely manner on the 

5 internet website of the Department of 

6 Health and Human Services, in a manner 

7 that, at a minimum, protects personal pri8 vacy to the extent required by applicable 

9 Federal and State law; and 

10 ‘‘(ii) making the data submitted to 

11 such registries or systems available to re12 searchers, in a manner that, at a min13 imum, protects personal privacy to the ex14 tent required by applicable Federal and 

15 State law; and 

16 ‘‘(2) awarding grants or cooperative agreements 

17 to States, Indian Tribes, and Tribal organizations for 

18 purposes of— 

19 ‘‘(A) supporting fetal and infant mortality 

20 and child death review programs for sudden un21 expected infant death and sudden unexpected 

22 death in childhood, including by establishing 

23 such programs at the local level; 


kjohnson on DSK79L0C42 with BILLS
20 

•S 1130 RS

1 ‘‘(B) improving data collection related to 

2 sudden unexpected infant death and sudden un3 expected death in childhood, including by— 

4 ‘‘(i) improving the completion of death 

5 scene investigations and comprehensive au6 topsies that include a review of clinical his7 tory and circumstances of death with ap8 propriate ancillary testing; and 

9 ‘‘(ii) training medical examiners, coro10 ners, death scene investigators, law enforce11 ment personnel, emergency medical techni12 cians, paramedics, emergency department 

13 personnel, and others who perform death 

14 scene investigations with respect to the 

15 deaths of infants and children, as appro16 priate; 

17 ‘‘(C) identifying, developing, and imple18 menting best practices to reduce or prevent sud19 den unexpected infant death and sudden unex20 pected death in childhood, including practices to 

21 reduce sleep-related infant deaths; 

22 ‘‘(D) increasing the voluntary inclusion, in 

23 registries established for the purpose of con24 ducting research on sudden unexpected infant 

25 death and sudden unexpected death in childhood, 


kjohnson on DSK79L0C42 with BILLS
21 

•S 1130 RS

1 of samples of tissues or genetic materials from 

2 autopsies that have been collected pursuant to 

3 Federal or State law; or 

4 ‘‘(E) disseminating information and mate5 rials to health care professionals and the public 

6 on risk factors that contribute to sudden unex7 pected infant death and sudden unexpected death 

8 in childhood, which may include information on 

9 risk factors that contribute to sleep-related sud10 den unexpected infant death or sudden unex11 pected death in childhood. 

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

13 or cooperative agreement under subsection (a)(2), a State, 

14 Indian Tribe, or Tribal organization shall submit to the 

15 Secretary an application at such time, in such manner, and 

16 containing such information as the Secretary may require, 

17 including information on how such State will ensure activi18 ties conducted under this section are coordinated with other 

19 federally-funded programs to reduce infant mortality, as 

20 appropriate. 

21 ‘‘(c) TECHNICAL ASSISTANCE.—The Secretary shall 

22 provide technical assistance to States, Tribes, and Tribal 

23 organizations receiving a grant or cooperative agreement 

24 under subsection (a)(2) for purposes of carrying out the pro25 gram in accordance with this section. 


kjohnson on DSK79L0C42 with BILLS
22 

•S 1130 RS

1 ‘‘(d) REPORTING FORMS.— 

2 ‘‘(1) IN GENERAL.—The Secretary shall, as ap3 propriate, encourage the use of sudden unexpected in4 fant death and sudden unexpected death in childhood 

5 reporting forms developed in collaboration with the 

6 Centers for Disease Control and Prevention to im7 prove the quality of data submitted to the Sudden 

8 Unexpected Infant Death and Sudden Death in the 

9 Young Case Registry, and other fatality case report10 ing systems that include data pertaining to sudden 

11 unexpected infant death and sudden unexpected death 

12 in childhood. 

13 ‘‘(2) UPDATE OF FORMS.—The Secretary shall 

14 assess whether updates are needed to the sudden unex15 pected infant death investigation reporting form used 

16 by the Centers for Disease Control and Prevention in 

17 order to improve the use of such form with other fa18 tality case reporting systems supported by the De19 partment of Health and Human Services, and shall 

20 make such updates as appropriate. 

21 ‘‘(e) DEFINITIONS.—In this section: 

22 ‘‘(1) SUDDEN INFANT DEATH SYNDROME.—The 

23 term ‘sudden infant death syndrome’ means a sudden 

24 unexpected infant death that remains unexplained 

25 after a thorough case investigation. 


kjohnson on DSK79L0C42 with BILLS
23 

•S 1130 RS

1 ‘‘(2) SUDDEN UNEXPECTED INFANT DEATH.— 

2 The term ‘sudden unexpected infant death’ means the 

3 sudden death of an infant under 1 year of age that 

4 when first discovered did not have an obvious cause. 

5 Such term includes such deaths that are explained, as 

6 well as deaths that remain unexplained (which are 

7 known as sudden infant death syndrome). 

8 ‘‘(3) SUDDEN UNEXPECTED DEATH IN CHILD9 HOOD.—The term ‘sudden unexpected death in child10 hood’ means the sudden death of a child who is at 

11 least 1 year of age but not more than 17 years of age 

12 that, when first discovered, did not have an obvious 

13 cause. Such term includes such deaths that are ex14 plained, as well as deaths that remain unexplained 

15 (which are known as sudden unexplained death in 

16 childhood). 

17 ‘‘(4) SUDDEN UNEXPLAINED DEATH IN CHILD18 HOOD.—The term ‘sudden unexplained death in 

19 childhood’ means a sudden unexpected death in child20 hood that remains unexplained after a thorough case 

21 investigation. 

22 ‘‘(f) AUTHORIZATION OF APPROPRIATIONS.—For the 

23 purpose of carrying out this section, there are authorized 

24 to be appropriated such sums as may be necessary for each 

25 of fiscal years 2020 through 2024.’’. 


kjohnson on DSK79L0C42 with BILLS
24 

•S 1130 RS

1 SEC. 3. REPORT TO CONGRESS. 

2 (a) IN GENERAL.—Not later than 2 years after the 

3 date of enactment of this Act and biennially thereafter, the 

4 Secretary of Health and Human Services shall submit to 

5 the Committee on Health, Education, Labor, and Pensions 

6 of the Senate and the Committee on Energy and Commerce 

7 of the House of Representatives a report that contains, with 

8 respect to the reporting period— 

9 (1) information regarding the incidence and 

10 number of sudden unexpected infant death and sud11 den unexpected death in childhood (including the 

12 number of such infant and child deaths that remain 

13 unexplained after investigation), including, to the ex14 tent practicable— 

15 (A) a summary of such information by ra16 cial and ethnic group, and by State; 

17 (B) aggregate information obtained from 

18 death scene investigations and autopsies; and 

19 (C) recommendations for reducing the inci20 dence of sudden unexpected infant death and 

21 sudden unexpected death in childhood; 

22 (2) an assessment of the extent to which various 

23 approaches of reducing and preventing sudden unex24 pected infant death and sudden unexpected death in 

25 childhood have been effective; and 


kjohnson on DSK79L0C42 with BILLS
25 

•S 1130 RS

1 (3) a description of the activities carried out 

2 under section 1121 of the Public Health Service Act 

3 (as added by section 2). 

4 (b) DEFINITIONS.—In this section, the terms ‘‘sudden 

5 unexpected infant death’’ and ‘‘sudden unexpected death in 

6 childhood’’ have the meanings given such terms in section 

7 1121 of the Public Health Service Act (as added by section 

8 2). 


kjohnson on DSK79L0C42 with BILLS
Calendar No. 284 

116TH CONGRESS 

1ST SESSION S. 1130 

A BILL 

To amend the Public Health Service Act to improve 

death in early life. and enhance awareness about unexpected sudden the health of children and help better understand 

NOVEMBER 5, 2019 

Reported with an amendment 


kjohnson on DSK79L0C42 with BILLS