116TH CONGRESS 

2D SESSION S. 1130 

AN ACT 

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, 
2 

†S 1130 ES

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 Part B of title XI of the Public Health Service Act 

7 (42 U.S.C. 241 et seq.) is amended— 

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

9 INFANT DEATH SYNDROME’’ and inserting ‘‘SUD10 DEN UNEXPECTED INFANT DEATH, SUDDEN IN11 FANT DEATH SYNDROME, AND SUDDEN UNEX12 PECTED DEATH IN CHILDHOOD’’; and 

13 (2) by inserting before section 1122 the fol14 lowing: 

15 ‘‘SEC. 1121. ADDRESSING SUDDEN UNEXPECTED INFANT 

16 DEATH AND SUDDEN UNEXPECTED DEATH IN 

17 CHILDHOOD. 

18 ‘‘(a) IN GENERAL.—The Secretary may develop, sup19 port, or maintain programs or activities to address sudden 

20 unexpected infant death and sudden unexpected death in 

21 childhood, including by— 

22 ‘‘(1) continuing to support the Sudden Unex23 pected Infant Death and Sudden Death in the 

24 Young Case Registry of the Centers for Disease 

25 Control and Prevention and other fatality case re26 porting systems that include data pertaining to sud-
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1 den unexpected infant death and sudden unexpected 

2 death in childhood, as appropriate, including such 

3 systems supported by the Health Resources and 

4 Services Administration, in order to— 

5 ‘‘(A) increase the number of States and ju6 risdictions participating in such registries or 

7 systems; and 

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

9 or systems, which may include— 

10 ‘‘(i) making summary data available 

11 to the public in a timely manner on the 

12 internet website of the Department of 

13 Health and Human Services, in a manner 

14 that, at a minimum, protects personal pri15 vacy to the extent required by applicable 

16 Federal and State law; and 

17 ‘‘(ii) making the data submitted to 

18 such registries or systems available to re19 searchers, in a manner that, at a min20 imum, protects personal privacy to the ex21 tent required by applicable Federal and 

22 State law; and 

23 ‘‘(2) awarding grants or cooperative agreements 

24 to States, Indian Tribes, and Tribal organizations 

25 for purposes of— 
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1 ‘‘(A) supporting fetal and infant mortality 

2 and child death review programs for sudden un3 expected infant death and sudden unexpected 

4 death in childhood, including by establishing 

5 such programs at the local level; 

6 ‘‘(B) improving data collection related to 

7 sudden unexpected infant death and sudden un8 expected death in childhood, including by— 

9 ‘‘(i) improving the completion of death 

10 scene investigations and comprehensive au11 topsies that include a review of clinical his12 tory and circumstances of death with ap13 propriate ancillary testing; and 

14 ‘‘(ii) training medical examiners, coro15 ners, death scene investigators, law en16 forcement personnel, emergency medical 

17 technicians, paramedics, emergency depart18 ment personnel, and others who perform 

19 death scene investigations with respect to 

20 the deaths of infants and children, as ap21 propriate; 

22 ‘‘(C) identifying, developing, and imple23 menting best practices to reduce or prevent 

24 sudden unexpected infant death and sudden un-
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1 expected death in childhood, including practices 

2 to reduce sleep-related infant deaths; 

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

4 registries established for the purpose of con5 ducting research on sudden unexpected infant 

6 death and sudden unexpected death in child7 hood, of samples of tissues or genetic materials 

8 from autopsies that have been collected pursu9 ant to Federal or State law and for which the 

10 parent or guardian has provided informed con11 sent for inclusion in such registries; or 

12 ‘‘(E) disseminating information and mate13 rials to health care professionals and the public 

14 on risk factors that contribute to sudden unex15 pected infant death and sudden unexpected 

16 death in childhood, which may include informa17 tion on risk factors that contribute to sleep-re18 lated sudden unexpected infant death or sudden 

19 unexpected death in childhood. 

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

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

22 Indian Tribe, or Tribal organization shall submit to the 

23 Secretary an application at such time, in such manner, 

24 and containing such information as the Secretary may re25 quire, including information on how such State will ensure 
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1 activities conducted under this section are coordinated 

2 with other federally-funded programs to reduce infant 

3 mortality, as appropriate. 

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

5 provide technical assistance to States, Tribes, and Tribal 

6 organizations receiving a grant or cooperative agreement 

7 under subsection (a)(2) for purposes of carrying out the 

8 program in accordance with this section. 

9 ‘‘(d) REPORTING FORMS.— 

10 ‘‘(1) IN GENERAL.—The Secretary shall, as ap11 propriate, encourage the use of sudden unexpected 

12 infant death and sudden unexpected death in child13 hood reporting forms developed in collaboration with 

14 the Centers for Disease Control and Prevention to 

15 improve the quality of data submitted to the Sudden 

16 Unexpected Infant Death and Sudden Death in the 

17 Young Case Registry, and other fatality case report18 ing systems that include data pertaining to sudden 

19 unexpected infant death and sudden unexpected 

20 death in childhood. 

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

22 assess whether updates are needed to the sudden un23 expected infant death investigation reporting form 

24 used by the Centers for Disease Control and Preven25 tion in order to improve the use of such form with 
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1 other fatality case reporting systems supported by 

2 the Department of Health and Human Services, and 

3 shall make such updates as appropriate. 

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

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

6 term ‘sudden infant death syndrome’ means a sud7 den unexpected infant death that remains unex8 plained after a thorough case investigation. 

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

10 The term ‘sudden unexpected infant death’ means 

11 the sudden death of an infant under 1 year 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 infant death syndrome). 

16 ‘‘(3) SUDDEN UNEXPECTED DEATH IN CHILD17 HOOD.—The term ‘sudden unexpected death in 

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

19 at least 1 year of age but not more than 17 years 

20 of age that, when first discovered, did not have an 

21 obvious cause. Such term includes such deaths that 

22 are explained, as well as deaths that remain unex23 plained (which are known as sudden unexplained 

24 death in childhood). 
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1 ‘‘(4) SUDDEN UNEXPLAINED DEATH IN CHILD2 HOOD.—The term ‘sudden unexplained death in 

3 childhood’ means a sudden unexpected death in 

4 childhood that remains unexplained after a thorough 

5 case investigation. 

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

7 purpose of carrying out this section, there is authorized 

8 to be appropriated $12,000,000 for each of fiscal years 

9 2021 through 2025.’’. 

10 SEC. 3. REPORT TO CONGRESS. 

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

12 date of enactment of this Act and biennially thereafter, 

13 the Secretary of Health and Human Services shall submit 

14 to the Committee on Health, Education, Labor, and Pen15 sions of the Senate and the Committee on Energy and 

16 Commerce of the House of Representatives a report that 

17 contains, with respect to the reporting period— 

18 (1) information regarding the incidence and 

19 number of sudden unexpected infant death and sud20 den unexpected death in childhood (including the 

21 number of such infant and child deaths that remain 

22 unexplained after investigation), including, to the ex23 tent practicable— 

24 (A) a summary of such information by ra25 cial and ethnic group, and by State; 
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1 (B) aggregate information obtained from 

2 death scene investigations and autopsies; and 

3 (C) recommendations for reducing the inci4 dence of sudden unexpected infant death and 

5 sudden unexpected death in childhood; 

6 (2) an assessment of the extent to which var7 ious approaches of reducing and preventing sudden 

8 unexpected infant death and sudden unexpected 

9 death in childhood have been effective; and 

10 (3) a description of the activities carried out 

11 under section 1121 of the Public Health Service Act 

12 (as added by section 2). 

13 (b) DEFINITIONS.—In this section, the terms ‘‘sud14 den unexpected infant death’’ and ‘‘sudden unexpected 

15 death in childhood’’ have the meanings given such terms 

16 in section 1121 of the Public Health Service Act (as added 

17 by section 2). 

Passed the Senate May 20, 2020. 

Attest: 

Secretary. 
116TH CONGRESS 

2D SESSION S. 1130 

AN ACT 

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