In the House of Representatives, U. S., 

December 10, 2020. 

Resolved, That the bill from the Senate (S. 1130) entitled ‘‘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.’’, do pass with the following 

AMENDMENT: 

Strike all after section 1 and insert the following: 

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

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

3 (42 U.S.C. 241 et seq.) is amended— 

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

5 INFANT DEATH SYNDROME’’ and inserting ‘‘SUD6 DEN UNEXPECTED INFANT DEATH, SUDDEN IN7 FANT DEATH SYNDROME, AND SUDDEN UNEX8 PECTED DEATH IN CHILDHOOD’’; and 

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

10 ‘‘SEC. 1121. ADDRESSING SUDDEN UNEXPECTED INFANT 

11 DEATH AND SUDDEN UNEXPECTED DEATH IN 

12 CHILDHOOD. 

13 ‘‘(a) IN GENERAL.—The Secretary may develop, sup14 port, or maintain programs or activities to address sudden 
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1 unexpected infant death and sudden unexpected death in 

2 childhood, including by— 

3 ‘‘(1) continuing to support the Sudden Unex4 pected Infant Death and Sudden Death in the Young 

5 Case Registry of the Centers for Disease Control and 

6 Prevention and other fatality case reporting systems 

7 that include data pertaining to sudden unexpected in8 fant death and sudden unexpected death in childhood, 

9 as appropriate, including such systems supported by 

10 the Health Resources and Services Administration, in 

11 order to— 

12 ‘‘(A) increase the number of States and ju13 risdictions participating in such registries or 

14 systems; and 

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

16 or systems, which may include— 

17 ‘‘(i) making summary data available 

18 to the public in a timely manner on the 

19 internet website of the Department of 

20 Health and Human Services, in a manner 

21 that, at a minimum, protects personal pri22 vacy to the extent required by applicable 

23 Federal and State law; and 

24 ‘‘(ii) making the data submitted to 

25 such registries or systems available to re-
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1 searchers, in a manner that, at a min2 imum, protects personal privacy to the ex3 tent required by applicable Federal and 

4 State law; and 

5 ‘‘(2) awarding grants or cooperative agreements 

6 to States, Indian Tribes, and Tribal organizations for 

7 purposes of— 

8 ‘‘(A) supporting fetal and infant mortality 

9 and child death review programs for sudden un10 expected infant death and sudden unexpected 

11 death in childhood, including by establishing 

12 such programs at the local level; 

13 ‘‘(B) improving data collection related to 

14 sudden unexpected infant death and sudden un15 expected death in childhood, including by— 

16 ‘‘(i) improving the completion of death 

17 scene investigations and comprehensive au18 topsies that include a review of clinical his19 tory and circumstances of death with ap20 propriate ancillary testing; and 

21 ‘‘(ii) training medical examiners, coro22 ners, death scene investigators, law enforce23 ment personnel, emergency medical techni24 cians, paramedics, emergency department 

25 personnel, and others who perform death 
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1 scene investigations with respect to the 

2 deaths of infants and children, as appro3 priate; 

4 ‘‘(C) identifying, developing, and imple5 menting best practices to reduce or prevent sud6 den unexpected infant death and sudden unex7 pected death in childhood, including practices to 

8 reduce sleep-related infant deaths; 

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

10 registries established for the purpose of con11 ducting research on sudden unexpected infant 

12 death and sudden unexpected death in childhood, 

13 of samples of tissues or genetic materials from 

14 autopsies that have been collected pursuant to 

15 Federal or State law and for which the parent 

16 or guardian has provided informed consent for 

17 inclusion in such registries; 

18 ‘‘(E) disseminating information and mate19 rials to health care professionals and the public 

20 on risk factors that contribute to sudden unex21 pected infant death and sudden unexpected death 

22 in childhood, which may include information on 

23 risk factors that contribute to sleep-related sud24 den unexpected infant death or sudden unex25 pected death in childhood; or 
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1 ‘‘(F) providing information, referrals, or 

2 peer or follow-up support services to families 

3 who have experienced sudden unexpected infant 

4 death or sudden unexpected death in childhood. 

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

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

7 Indian Tribe, or Tribal organization shall submit to the 

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

9 containing such information as the Secretary may require, 

10 including information on how such State will ensure activi11 ties conducted under this section are coordinated with other 

12 federally-funded programs to reduce infant and child mor13 tality, as appropriate. 

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

15 provide technical assistance to States, Tribes, and Tribal 

16 organizations receiving a grant or cooperative agreement 

17 under subsection (a)(2) for purposes of carrying out the pro18 gram in accordance with this section. 

19 ‘‘(d) REPORTING FORMS.— 

20 ‘‘(1) IN GENERAL.—The Secretary shall, as ap21 propriate, encourage the use of sudden unexpected in22 fant death and sudden unexpected death in childhood 

23 reporting forms developed in collaboration with the 

24 Centers for Disease Control and Prevention to im25 prove the quality of data submitted to the Sudden 
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1 Unexpected Infant Death and Sudden Death in the 

2 Young Case Registry, and other fatality case report3 ing systems that include data pertaining to sudden 

4 unexpected infant death and sudden unexpected death 

5 in childhood. 

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

7 assess whether updates are needed to the sudden unex8 pected infant death investigation reporting form used 

9 by the Centers for Disease Control and Prevention in 

10 order to improve the use of such form with other fa11 tality case reporting systems supported by the De12 partment of Health and Human Services, and shall 

13 make such updates as appropriate. 

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

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

16 term ‘sudden infant death syndrome’ means a sudden 

17 unexpected infant death that remains unexplained 

18 after a thorough case investigation. 

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

20 The term ‘sudden unexpected infant death’ means the 

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

22 when first discovered did not have an obvious cause. 

23 Such term includes such deaths that are explained, as 

24 well as deaths that remain unexplained (which are 

25 known as sudden infant death syndrome). 
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1 ‘‘(3) SUDDEN UNEXPECTED DEATH IN CHILD2 HOOD.—The term ‘sudden unexpected death in child3 hood’ means the sudden death of a child who is at 

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

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

6 cause. Such term includes such deaths that are ex7 plained, as well as deaths that remain unexplained 

8 (which are known as sudden unexplained death in 

9 childhood). 

10 ‘‘(4) SUDDEN UNEXPLAINED DEATH IN CHILD11 HOOD.—The term ‘sudden unexplained death in 

12 childhood’ means a sudden unexpected death in child13 hood that remains unexplained after a thorough case 

14 investigation. 

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

16 purpose of carrying out this section, there is authorized to 

17 be appropriated $12,000,000 for each of fiscal years 2022 

18 through 2026.’’. 

19 SEC. 3. REPORT TO CONGRESS. 

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

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

22 Secretary of Health and Human Services shall submit to 

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

24 of the Senate and the Committee on Energy and Commerce 
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1 of the House of Representatives a report that contains, with 

2 respect to the reporting period— 

3 (1) information regarding the incidence and 

4 number of sudden unexpected infant death and sud5 den unexpected death in childhood (including the 

6 number of such infant and child deaths that remain 

7 unexplained after investigation), including, to the ex8 tent practicable— 

9 (A) a summary of such information by ra10 cial and ethnic group, and by State; 

11 (B) aggregate information obtained from 

12 death scene investigations and autopsies; and 

13 (C) recommendations for reducing the inci14 dence of sudden unexpected infant death and 

15 sudden unexpected death in childhood; 

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

17 approaches of reducing and preventing sudden unex18 pected infant death and sudden unexpected death in 

19 childhood have been effective; and 

20 (3) a description of the activities carried out 

21 under section 1121 of the Public Health Service Act 

22 (as added by section 2). 

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

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

25 childhood’’ have the meanings given such terms in section 
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1 1121 of the Public Health Service Act (as added by section 

2 2). 

Attest: 

Clerk. 
116TH CONGRESS 

2D SESSION S. 1130 

AMENDMENT