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 Com-
mittee on Energy and Commerce 
A BILL 
To amend the Public Health Service Act to improve the 
health of children and help better understand and en-
hance awareness about unexpected sudden death in early 
life. 
Be it enacted by the Senate and House of Representa-
tives of the United States of America in Congress assembled, 
SECTION 1. SHORT TITLE. 
This Act may be cited as the ‘‘Scarlett’s Sunshine 
on Sudden Unexpected Death Act’’. 
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SEC. 2. AMENDMENT TO THE PUBLIC HEALTH SERVICE 
ACT. 
Title III of the Public Health Service Act (42 U.S.C. 
241 et seq.) is amended by adding at the end the fol-
lowing: 
‘‘PART W—SUDDEN UNEXPECTED INFANT DEATH 
AND 
SUDDEN 
UNEXPECTED 
DEATH 
IN 
CHILDHOOD 
‘‘SEC. 399OO. DEFINITIONS. 
‘‘In this part: 
‘‘(1) ADMINISTRATOR.—The term ‘Adminis-
trator’ means the Administrator of the Health Re-
sources and Services Administration. 
‘‘(2) DEATH SCENE INVESTIGATOR.—The term 
‘death scene investigator’ means an individual cer-
tified or trained as a death scene investigator by an 
accredited professional certification board. 
‘‘(3) DIRECTOR.—The term ‘Director’ means 
the Director of the Centers for Disease Control and 
Prevention. 
‘‘(4) STATE.—The term ‘State’ has the mean-
ing given to such term in section 2, except that such 
term includes Indian tribes and tribal organizations 
(as such terms are defined in section 4 of the Indian 
Self-Determination and Education Assistance Act). 
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‘‘(5) SUDDEN
UNEXPECTED
INFANT
DEATH; 
SUID.—The terms ‘sudden unexpected infant death’ 
and ‘SUID’ mean the sudden death of an infant 
under 1 year of age that when first discovered did 
not have an obvious cause. Such terms include those 
deaths that are later determined to be from ex-
plained as well as unexplained causes. 
‘‘(6) SUDDEN UNEXPECTED DEATH IN CHILD-
HOOD; SUDC.—The terms ‘sudden unexpected death 
in childhood’ and ‘SUDC’ mean the sudden death of 
a child who is 1 year of age or older that, when first 
discovered, did not have an obvious cause. Such 
terms include those deaths that are later determined 
to be from an explained cause, and those deaths that 
remain unexplained after a thorough case investiga-
tion that includes a review of the clinical history and 
circumstances of death and performance of a com-
prehensive, standardized autopsy with appropriate 
ancillary testing (which are known as ‘sudden unex-
plained death in childhood’). 
‘‘SEC. 399OO–1. DEATH SCENE INVESTIGATION AND AU-
TOPSY. 
‘‘(a) INVESTIGATIONS.— 
‘‘(1) 
REPORTING.—The 
Secretary, 
acting 
through the Director, in consultation with experts 
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that include board-certified forensic pathologists, 
medical examiners, coroners, pediatric pathologists, 
pediatric cardiologists, pediatric neuropathologists 
and geneticists, and other individuals and groups as 
the Director determines appropriate, shall revise the 
Sudden Unexplained Infant Death Investigation Re-
porting Form of the Centers for Disease Control and 
Prevention to include doll re-enactments and scene 
investigation information on sleep-related deaths of 
children younger than 5, and work to align such 
form with the National Fatality Review Case Re-
porting System. 
‘‘(2) GRANTS.—The Secretary, acting through 
the Director, shall award grants to States to enable 
such States to improve the completion of comprehen-
sive death scene investigations, and reviews of such 
investigations, for sudden unexpected infant death 
and sudden unexpected death in childhood. 
‘‘(3) APPLICATION.—To be eligible to receive a 
grant under paragraph (2), a State shall submit to 
the Secretary an application at such time, in such 
manner, and containing such information as the Sec-
retary may require. 
‘‘(4) USE OF FUNDS.— 
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‘‘(A) IN
GENERAL.—A State shall use 
amounts received under a grant under para-
graph (2) to improve the completion of com-
prehensive death scene investigations for sud-
den unexpected infant death and sudden unex-
pected death in childhood, including through 
the awarding of subgrants to local jurisdictions 
(which may include subgrants to medical exam-
iners, coroners, and other local entities respon-
sible for conducting autopsies) to be used to im-
plement standard death scene investigation pro-
tocols for sudden unexpected infant death and 
sudden unexpected death in childhood and con-
duct comprehensive, standardized autopsies. 
‘‘(B) 
PROTOCOLS.—A 
standard 
death 
scene protocol implemented under subparagraph 
(A) shall include the obtaining of information 
on— 
‘‘(i) current and past medical history 
of the infant or child and, as relevant, the 
infant’s or child’s family; 
‘‘(ii) the circumstances surrounding 
the death, including any suspicious cir-
cumstances, whether there were any acci-
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dental or environmental factors associated 
with the death; and 
‘‘(iii) in the case of a sleep-related 
death, the sleep position and sleep environ-
ment of the infant or child. 
‘‘(b) AUTOPSIES.— 
‘‘(1) IN
GENERAL.—The Secretary, acting 
through the Director, shall award grants to States 
and local governmental entities to enable such States 
and entities to increase the rate at which com-
prehensive, standardized autopsies are performed for 
sudden unexpected infant death and sudden unex-
pected death in childhood. 
‘‘(2) INFORMED
CONSENT.—Grants awarded 
under this subsection may be used for studies and 
demonstration projects to increase the rate of con-
sent among families of deceased children for the in-
clusion of genetic or tissue samples collected during 
autopsy in registries established for the purposes of 
conducting research into SUID and SUDC. 
‘‘(3) APPLICATION.—To be eligible to receive a 
grant under paragraph (1), an eligible entity de-
scribed in such paragraph shall submit to the Sec-
retary an application that includes— 
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‘‘(A) a description of the methods to be 
studied or tested to increase the rate of consent 
among families of deceased children for the in-
clusion of genetic or tissue samples collected 
during autopsy; 
‘‘(B) information about the governmental 
and nongovernmental entities with whom the el-
igible entity will partner; and 
‘‘(C) any additional information as the 
Secretary may require. 
‘‘(4) COMPREHENSIVE AUTOPSY.—For purposes 
of this subsection, a comprehensive, standardized au-
topsy includes, as appropriate, a full external and in-
ternal examination, including microscopic examina-
tion, of all major organs and tissues including the 
brain, complete radiographs, vitreous fluid analysis, 
photo documentation, metabolic testing, toxicology 
screening, and, when indicated, selected genetic and 
microbiology analyses of the infant or child involved. 
‘‘(c) GENETIC ANALYSIS.—The Director, in consulta-
tion with medical examiners, coroners, forensic patholo-
gists, geneticists, researchers, public health officials, and 
other individuals and groups as the Director determines 
appropriate, shall develop recommendations for a standard 
protocol for use in determining when to utilize genetic 
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analysis, and standard protocols for the collection and 
storage of specimens suitable for genetic analysis. 
‘‘(d) AUTHORIZATION
OF
APPROPRIATIONS.—To 
carry out this section, there is authorized to be appro-
priated $8,000,000 for each of fiscal years 2019 through 
2023. 
‘‘SEC. 399OO–2. TRAINING. 
‘‘(a) GRANTS.—The Secretary, acting through the 
Director, shall award grants to eligible entities for the pro-
vision of training on death scene investigation specific for 
SUID and SUDC. 
‘‘(b) ELIGIBLE ENTITIES.—To be eligible to receive 
a grant under subsection (a), an entity shall— 
‘‘(1) be— 
‘‘(A) a State or local government entity; or 
‘‘(B) a nonprofit private entity; 
‘‘(2) submit to the Secretary an application at 
such time, in such manner, and containing such in-
formation as the Secretary may require; and 
‘‘(3) make publishing training materials devel-
oped using a grant awarded under subsection (a) 
available on an internet website and at no charge to 
attendees of training under subsection (c)(1). 
‘‘(c) USE OF FUNDS.—An eligible entity shall use 
amounts received under a grant under this section to— 
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‘‘(1) provide training to medical examiners, 
coroners, death scene investigators, law enforcement 
personnel, justices of the peace, emergency medical 
technicians, paramedics, or emergency department 
personnel concerning death scene investigations for 
SUID and SUDC, including the use of standard 
death scene investigation protocols that include in-
formation on— 
‘‘(A) current and past medical history of 
the infant or child and, as relevant, the infant’s 
or child’s family; 
‘‘(B) the circumstances surrounding the 
death, including any suspicious circumstances; 
‘‘(C) whether there were any accidental or 
environmental factors associated with the death; 
and 
‘‘(D) in the case of a sleep-related death, 
the sleep position and sleep environment of the 
infant or child; 
‘‘(2) provide training directly to individuals who 
are responsible for conducting and reviewing death 
scene investigations for sudden unexpected infant 
death and sudden unexpected death in childhood; 
‘‘(3) provide training to multidisciplinary teams, 
including teams that have a medical examiner or 
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coroner, death scene investigator, law enforcement 
representative, and an emergency medical technician 
or paramedic; 
‘‘(4) in the case of national and State-based 
grantees that are comprised of medical examiners, 
coroners, death scene investigators, law enforcement 
personnel, or emergency medical technicians and 
paramedics, integrate training under the grant on 
death scene investigation of SUID and SUDC into 
professional accreditation and training programs; or 
‘‘(5) in the case of State and local government 
entity grantees, obtain equipment, including scene 
investigation kits, to aid in the completion of stand-
ard death scene investigation. 
‘‘(d) AUTHORIZATION
OF
APPROPRIATIONS.—To 
carry out this section, there is authorized to be appro-
priated $2,000,000 for each of fiscal years 2019 through 
2023. 
‘‘SEC. 399OO–3. INFANT AND CHILD DEATH REVIEW. 
‘‘(a) PREVENTION.— 
‘‘(1) CORE CAPACITY GRANTS.—The Secretary, 
acting through the Administrator and in consulta-
tion with the Associate Commissioner of the Chil-
dren’s Bureau of the Administration for Children 
and Families, shall award grants to States to build 
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and strengthen State capacity, and enable States to 
support local governments’ capacity, so as to review 
100 percent of all infant and child deaths, and to 
develop and implement prevention strategies, as ap-
propriate. 
‘‘(2) PLANNING GRANTS.—The Secretary, act-
ing through the Administrator, shall award planning 
grants to States in which the only infant and child 
death review programs are statewide, for the devel-
opment of local infant and child death review pro-
grams and prevention strategies. 
‘‘(3) APPLICATION.—To be eligible to receive a 
grant under paragraph (1) or (2), a State shall sub-
mit to the Secretary an application at such time, in 
such manner, and containing such information as 
the Secretary may require. 
‘‘(4) TECHNICAL ASSISTANCE.—The Secretary, 
acting through the Administrator, shall provide tech-
nical assistance to assist States— 
‘‘(A) in developing the capacity for com-
prehensive infant and child death review pro-
grams, including the development of best prac-
tices for the implementation of such programs; 
and 
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‘‘(B) in maintaining the National Fatality 
Review Case Reporting System. 
‘‘(b) AUTHORIZATION
OF
APPROPRIATIONS.—To 
carry out this section, there is authorized to be appro-
priated $15,000,000 for each of fiscal years 2019 through 
2023. 
‘‘SEC. 399OO–4. ENHANCING THE NATIONAL FATALITY RE-
VIEW CASE REPORTING SYSTEM. 
‘‘(a) IN GENERAL.—The Secretary, acting through 
the Director and in consultation with the National Fatal-
ity Review Case Reporting System, national health organi-
zations, and professional societies with experience and ex-
pertise relating to reducing SUID and SUDC, shall main-
tain current efforts of the National Fatality Review Case 
Reporting System so as to provide population-based data 
on unexpected deaths occurring for infants or children 
under age 18, in order to facilitate the understanding of 
the root causes, rates, trends, and geographic variations 
of SUID and SUDC. 
‘‘(b) COMPILATION AND AVAILABILITY OF DATA.— 
The Secretary shall— 
‘‘(1) compile the data submitted under this sec-
tion; 
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‘‘(2) make summary data available to the public 
in a timely manner on an appropriate internet 
website in a format that is useful to the public; and 
‘‘(3) make data submitted under this section 
available, in a manner that protects the privacy of 
individuals involved, to individuals or entities con-
ducting research into the causes of, or prevention 
methods for, SUID and SUDC. 
‘‘(c) AUTHORIZATION
OF
APPROPRIATIONS.—To 
carry out this section, there is authorized to be appro-
priated $1,000,000 for each of fiscal years 2019 through 
2023. 
‘‘SEC. 399OO–5. GRANTS TO SUPPORT INFANT SAFE SLEEP. 
‘‘(a) IN GENERAL.—The Secretary, acting through 
the Administrator, shall award grants to national organi-
zations, community-based organizations, municipal public 
safety departments, and nonprofit organizations for the 
provision of evidence-based approaches for educational 
programs, and outreach activities focused on decreasing 
the risk factors that contribute to sleep-related SUID. 
‘‘(b) APPLICATION.—To be eligible to receive a grant 
under subsection (a), an entity shall submit to the Sec-
retary an application at such time, in such manner, and 
containing such information as the Secretary may require. 
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‘‘(c) USE OF FUNDS.—Amounts received under a 
grant awarded under subsection (a) may be used to— 
‘‘(1) provide outreach and education services di-
rectly to parents and families, which— 
‘‘(A) may include home visits, 24-hour hot-
lines, internet-based educational materials, mo-
bile health technologies, and social marketing 
campaigns; 
‘‘(B) shall apply current safe sleep guide-
lines published by a professional pediatric orga-
nization; and 
‘‘(C) may provide safe sleep-related prod-
ucts to families at no cost or at reduced cost 
that have published, peer-reviewed evidence to 
support safer sleep environments for infants 
through age one; or 
‘‘(2) build capacity in professionals working 
with families to support safe sleep. 
‘‘(d) SAFE-SLEEP PRODUCTS.—Any product related 
to safe sleep for an infant that is provided under sub-
section (c)(1)(C) shall— 
‘‘(1) be in compliance with current safe sleep 
guidelines published by a professional pediatric orga-
nization; 
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‘‘(2) be intended for use by the infant through 
age one; and 
‘‘(3) be covered by, and be in compliance with, 
a regulation or mandatory standard promulgated by 
the Consumer Product Safety Commission. 
‘‘(e) PREFERENCE.—In awarding grants under sub-
section (a), the Secretary shall give preference to appli-
cants that have a proven history of developing or deliv-
ering interventions for infants and families to support safe 
sleep, include plans to report evidence of program out-
comes, and can demonstrate experience through collabora-
tions and partnerships for delivering services throughout 
a State or region. 
‘‘(f) SET-ASIDE.—Not more than 5 percent of the 
amount of funds appropriated to carry out this section 
may be used to conduct research into the behavioral risks 
that lead to unsafe sleep practices and ways to mitigate 
those risks. 
‘‘(g) AUTHORIZATION
OF
APPROPRIATIONS.—To 
carry out this section, there is authorized to be appro-
priated $5,000,000 for fiscal year 2019 and $7,000,000 
for each of fiscal years 2020 through 2023. 
‘‘SEC. 399OO–6. GRANTS FOR SUPPORT SERVICES. 
‘‘(a) IN GENERAL.—The Secretary, acting through 
the Administrator, shall award grants to national organi-
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zations, State and local health departments, community- 
based organizations, and nonprofit organizations for the 
provision of support services to families who have had a 
child die of sudden unexpected infant death or sudden un-
explained death in childhood. 
‘‘(b) APPLICATION.—To be eligible to receive a grant 
under subsection (a), an entity shall submit to the Sec-
retary an application at such time, in such manner, and 
containing such information as the Secretary may require. 
‘‘(c) USE OF FUNDS.—Amounts received under a 
grant awarded under subsection (a) may be used— 
‘‘(1) to provide grief counseling, education, 
home visits, 24-hour hotlines, or information, re-
sources, and referrals; 
‘‘(2) to ensure access to grief and bereavement 
services; 
‘‘(3) to build capacity in professionals working 
with families who experience a sudden death; or 
‘‘(4) to support groups for families who have 
lost a child to sudden unexpected infant death or 
sudden unexplained death in childhood. 
‘‘(d) PREFERENCE.—In awarding grants under sub-
section (a), the Secretary shall give preference to appli-
cants that— 
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‘‘(1) have a proven history of effective direct 
support services and interventions for sudden unex-
pected infant death and sudden unexplained death in 
childhood; and 
‘‘(2) demonstrate experience through collabora-
tions and partnerships for delivering services de-
scribed in subsection (c). 
‘‘(e) AUTHORIZATION OF APPROPRIATIONS.—There 
is authorized to be appropriated to carry out this section 
$1,000,000 for each of fiscal years 2019 through 2023.’’. 
SEC. 3. SENSE OF CONGRESS. 
It is the sense of Congress that additional research 
is needed to improve the understanding of the epidemi-
ology of sudden unexpected infant and childhood deaths 
that remain unexplained following a comprehensive, stand-
ardized autopsy and appropriate ancillary testing. 
SEC. 4. REPORT TO CONGRESS. 
Not later than 1 year after the date of enactment 
of this Act, and biennially thereafter, the Secretary of 
Health and Human Services, acting through the Director 
of the Centers for Disease Control and Prevention and in 
consultation with the Director of the National Institutes 
of Health and the Administrator of the Health Resources 
and Services Administration, shall submit to the Com-
mittee on Health, Education, Labor, and Pensions of the 
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Senate and the Committee on Energy and Commerce of 
the House of Representatives a report that contains, with 
respect to the preceding reporting period— 
(1) information regarding the absolute number 
and incidence of sudden unexpected infant death, 
the absolute number and incidence of sudden unex-
pected death in childhood, information about the 
number of such infant and child deaths that remain 
unexplained, information about such conditions by 
racial and ethnic groups, information about such 
conditions by State, aggregate information obtained 
from death scene investigations and autopsies, and 
recommendations for reducing the incidence of sud-
den unexpected infant death and sudden unexpected 
death in childhood; 
(2) an assessment of the extent to which var-
ious approaches of preventing sudden unexpected in-
fant death have been effective; 
(3) a description of the activities carried out 
under part W of title III of the Public Health Serv-
ice Act (as added by section 2); and 
(4) any recommendations of the Secretary re-
garding such part W. 
Æ 
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