I 

116TH CONGRESS 

1ST SESSION H. R. 2271 

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 HOUSE OF REPRESENTATIVES 

APRIL 10, 2019 

Ms. MOORE (for herself, Mr. COLE, Ms. HERRERA BEUTLER, Mr. 

GOTTHEIMER, Ms. CLARKE of New York, Mrs. RODGERS of Washington, 

Ms. WASSERMAN SCHULTZ, Mr. GRIJALVA, Mr. KHANNA, Ms. NORTON, 

Mr. KING of New York, Ms. MCCOLLUM, Mr. CARTWRIGHT, and Ms. 

DELBENE) introduced the following bill; which was referred to the Committee on Energy and Commerce 

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; SUDC.—The terms ‘sudden unexpected death 

10 in childhood’ and ‘SUDC’ mean the sudden death of 

11 a child who is 1 year of age or older that, when first 

12 discovered, did not have an obvious cause. Such 

13 terms include those deaths that are later determined 

14 to be from an explained cause, and those deaths that 

15 remain unexplained after a thorough case investiga16 tion that includes a review of the clinical history and 

17 circumstances 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 21:38 Apr 22, 2019 Jkt 089200 PO 00000 Frm 00005 Fmt 6652 Sfmt 6201 E:\BILLS\H2271.IH H2271

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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 SUID and SUDC. 

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

22 grant under paragraph (1), an eligible entity de23 scribed in such paragraph shall submit to the Sec24 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 SUID and SUDC. 

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

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

14 ‘‘(1) be— 

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

16 ‘‘(B) a nonprofit private entity; 

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

18 such time, in such manner, and containing such in19 formation as the Secretary may require; and 

20 ‘‘(3) make publishing training materials devel21 oped using a grant awarded under subsection (a) 

22 available on an internet website and at no charge to 

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

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

25 amounts received under a grant under this section to— 


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

2 coroners, death scene investigators, law enforcement 

3 personnel, justices of the peace, emergency medical 

4 technicians, paramedics, or emergency department 

5 personnel concerning death scene investigations for 

6 SUID and SUDC, including the use of standard 

7 death scene investigation protocols that include in8 formation on— 

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

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

11 or child’s family; 

12 ‘‘(B) the circumstances surrounding the 

13 death, including any suspicious circumstances; 

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

15 environmental factors associated with the death; 

16 and 

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

18 the sleep position and sleep environment of the 

19 infant or child; 

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

21 are responsible for conducting and reviewing death 

22 scene investigations for sudden unexpected infant 

23 death and sudden unexpected death in childhood; 

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

25 including teams that have a medical examiner or 


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1 coroner, death scene investigator, law enforcement 

2 representative, and an emergency medical technician 

3 or paramedic; 

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

5 grantees that are comprised of medical examiners, 

6 coroners, death scene investigators, law enforcement 

7 personnel, or emergency medical technicians and 

8 paramedics, integrate training under the grant on 

9 death scene investigation of SUID and SUDC into 

10 professional accreditation and training programs; or 

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

12 entity grantees, obtain equipment, including scene 

13 investigation kits, to aid in the completion of stand14 ard death scene investigation. 

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

16 carry out this section, there is authorized to be appro17 priated $2,000,000 for each of fiscal years 2019 through 

18 2023. 

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

20 ‘‘(a) PREVENTION.— 

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

22 acting through the Administrator and in consulta23 tion with the Associate Commissioner of the Chil24 dren’s Bureau of the Administration for Children 

25 and Families, shall award grants to States to build 


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1 and strengthen State capacity, and enable States to 

2 support local governments’ capacity, so as to review 

3 100 percent of all infant and child deaths, and to 

4 develop and implement prevention strategies, as ap5 propriate. 

6 ‘‘(2) PLANNING GRANTS.—The Secretary, act7 ing through the Administrator, shall award planning 

8 grants to States in which the only infant and child 

9 death review programs are statewide, for the devel10 opment of local infant and child death review pro11 grams and prevention strategies. 

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

13 grant under paragraph (1) or (2), a State shall sub14 mit to the Secretary an application at such time, in 

15 such manner, and containing such information as 

16 the Secretary may require. 

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

18 acting through the Administrator, shall provide tech19 nical assistance to assist States— 

20 ‘‘(A) in developing the capacity for com21 prehensive infant and child death review pro22 grams, including the development of best prac23 tices for the implementation of such programs; 

24 and 


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1 ‘‘(B) in maintaining the National Fatality 

2 Review Case Reporting System. 

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

4 carry out this section, there is authorized to be appro5 priated $15,000,000 for each of fiscal years 2019 through 

6 2023. 

7 ‘‘SEC. 399OO–4. ENHANCING THE NATIONAL FATALITY RE8 VIEW CASE REPORTING SYSTEM. 

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

10 the Director and in consultation with the National Fatal11 ity Review Case Reporting System, national health organi12 zations, and professional societies with experience and ex13 pertise relating to reducing SUID and SUDC, shall main14 tain current efforts of the National Fatality Review Case 

15 Reporting System so as to provide population-based data 

16 on unexpected deaths occurring for infants or children 

17 under age 18, in order to facilitate the understanding of 

18 the root causes, rates, trends, and geographic variations 

19 of SUID and SUDC. 

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

21 The Secretary shall— 

22 ‘‘(1) compile the data submitted under this sec23 tion; 


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

2 in a timely manner on an appropriate internet 

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

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

5 available, in a manner that protects the privacy of 

6 individuals involved, to individuals or entities con7 ducting research into the causes of, or prevention 

8 methods for, SUID and SUDC. 

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

10 carry out this section, there is authorized to be appro11 priated $1,000,000 for each of fiscal years 2019 through 

12 2023. 

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

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

15 the Administrator, shall award grants to national organi16 zations, community-based organizations, municipal public 

17 safety departments, and nonprofit organizations for the 

18 provision of evidence-based approaches for educational 

19 programs, and outreach activities focused on decreasing 

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

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

22 under subsection (a), an entity shall submit to the Sec23 retary an application at such time, in such manner, and 

24 containing such information as the Secretary may require. 


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

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

3 ‘‘(1) provide outreach and education services di4 rectly to parents and families, which— 

5 ‘‘(A) may include home visits, 24-hour hot6 lines, internet-based educational materials, mo7 bile health technologies, and social marketing 

8 campaigns; 

9 ‘‘(B) shall apply current safe sleep guide10 lines published by a professional pediatric orga11 nization; and 

12 ‘‘(C) may provide safe sleep-related prod13 ucts to families at no cost or at reduced cost 

14 that have published, peer-reviewed evidence to 

15 support safer sleep environments for infants 

16 through age one; or 

17 ‘‘(2) build capacity in professionals working 

18 with families to support safe sleep. 

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

20 to safe sleep for an infant that is provided under sub21 section (c)(1)(C) shall— 

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

23 guidelines published by a professional pediatric orga24 nization; 


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

2 age one; and 

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

4 a regulation or mandatory standard promulgated by 

5 the Consumer Product Safety Commission. 

6 ‘‘(e) PREFERENCE.—In awarding grants under sub7 section (a), the Secretary shall give preference to appli8 cants that have a proven history of developing or deliv9 ering interventions for infants and families to support safe 

10 sleep, include plans to report evidence of program out11 comes, and can demonstrate experience through collabora12 tions and partnerships for delivering services throughout 

13 a State or region. 

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

15 amount of funds appropriated to carry out this section 

16 may be used to conduct research into the behavioral risks 

17 that lead to unsafe sleep practices and ways to mitigate 

18 those risks. 

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

20 carry out this section, there is authorized to be appro21 priated $5,000,000 for fiscal year 2019 and $7,000,000 

22 for each of fiscal years 2020 through 2023. 

23 ‘‘SEC. 399OO–6. GRANTS FOR SUPPORT SERVICES. 

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

25 the Administrator, shall award grants to national organiVerDate Sep 11 2014 21:38 Apr 22, 2019 Jkt 089200 PO 00000 Frm 00015 Fmt 6652 Sfmt 6201 E:\BILLS\H2271.IH H2271

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1 zations, State and local health departments, community2 based organizations, and nonprofit organizations for the 

3 provision of support services to families who have had a 

4 child die of sudden unexpected infant death or sudden un5 explained death in childhood. 

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

7 under subsection (a), an entity shall submit to the Sec8 retary an application at such time, in such manner, and 

9 containing such information as the Secretary may require. 

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

11 grant awarded under subsection (a) may be used— 

12 ‘‘(1) to provide grief counseling, education, 

13 home visits, 24-hour hotlines, or information, re14 sources, and referrals; 

15 ‘‘(2) to ensure access to grief and bereavement 

16 services; 

17 ‘‘(3) to build capacity in professionals working 

18 with families who experience a sudden death; or 

19 ‘‘(4) to support groups for families who have 

20 lost a child to sudden unexpected infant death or 

21 sudden unexplained death in childhood. 

22 ‘‘(d) PREFERENCE.—In awarding grants under sub23 section (a), the Secretary shall give preference to appli24 cants that— 


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1 ‘‘(1) have a proven history of effective direct 

2 support services and interventions for sudden unex3 pected infant death and sudden unexplained death in 

4 childhood; and 

5 ‘‘(2) demonstrate experience through collabora6 tions and partnerships for delivering services de7 scribed in subsection (c). 

8 ‘‘(e) AUTHORIZATION OF APPROPRIATIONS.—There 

9 is authorized to be appropriated to carry out this section 

10 $1,000,000 for each of fiscal years 2019 through 2023.’’. 

11 SEC. 3. SENSE OF CONGRESS. 

12 It is the sense of Congress that additional research 

13 is needed to improve the understanding of the epidemi14 ology of sudden unexpected infant and childhood deaths 

15 that remain unexplained following a comprehensive, stand16 ardized autopsy and appropriate ancillary testing. 

17 SEC. 4. REPORT TO CONGRESS. 

18 Not later than 1 year after the date of enactment 

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

20 Health and Human Services, acting through the Director 

21 of the Centers for Disease Control and Prevention and in 

22 consultation with the Director of the National Institutes 

23 of Health and the Administrator of the Health Resources 

24 and Services Administration, shall submit to the Com25 mittee on Health, Education, Labor, and Pensions of the 


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1 Senate and the Committee on Energy and Commerce of 

2 the House of Representatives a report that contains, with 

3 respect to the preceding reporting period— 

4 (1) information regarding the absolute number 

5 and incidence of sudden unexpected infant death, 

6 the absolute number and incidence of sudden unex7 pected death in childhood, information about the 

8 number of such infant and child deaths that remain 

9 unexplained, information about such conditions by 

10 racial and ethnic groups, information about such 

11 conditions by State, aggregate information obtained 

12 from death scene investigations and autopsies, and 

13 recommendations for reducing the incidence of sud14 den unexpected infant death and sudden unexpected 

15 death in childhood; 

16 (2) an assessment of the extent to which var17 ious approaches of preventing sudden unexpected in18 fant death have been effective; 

19 (3) a description of the activities carried out 

20 under part W of title III of the Public Health Serv21 ice Act (as added by section 2); and 

22 (4) any recommendations of the Secretary re23 garding such part W. 

Æ 


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