IB 
Union Calendar No. 417 
113TH CONGRESS 
2D SESSION 
H. R. 669 
[Report No. 113–557] 
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 
FEBRUARY 13, 2013 
Mr. PALLONE (for himself and Mr. KING of New York) introduced the 
following bill; which was referred to the Committee on Energy and Commerce 
JULY 24, 2014 
Additional sponsors: Ms. SPEIER, Mr. RANGEL, Mr. CONNOLLY, Mrs. CARO-
LYN B. MALONEY of New York, Ms. BROWNLEY of California, Ms. 
KUSTER, Mr. CRAWFORD, Mrs. MCCARTHY of New York, Mr. VAN HOL-
LEN, Mr. MORAN, Mr. JONES, Mr. SCHIFF, Mr. GRIJALVA, Mr. HAS-
TINGS of Florida, Ms. SCHAKOWSKY, Mrs. CHRISTENSEN, Mr. ELLISON, 
Ms. MATSUI, and Mr. CICILLINE 
JULY 24, 2014 
Reported with an amendment, committed to the Committee of the Whole 
House on the State of the Union, and ordered to be printed 
[Strike out all after the enacting clause and insert the part printed in italic] 
[For text of introduced bill, see copy of bill as introduced on February 13, 2013] 
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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. 
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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 ‘‘Sudden Unexpected 
Death Data Enhancement and Awareness Act’’. 
SEC. 2. STILLBIRTH AND SUDDEN DEATHS IN THE YOUNG. 
The Public Health Service Act is amended by inserting 
after section 317L of such Act (42 U.S.C. 247b–13) the fol-
lowing: 
‘‘SEC. 317L–1. STILLBIRTH AND SUDDEN DEATHS IN THE 
YOUNG. 
‘‘(a) STILLBIRTH ACTIVITIES.—The Secretary, acting 
through the Director of the Centers for Disease Control and 
Prevention, shall continue to carry out activities of the Cen-
ters relating to stillbirth, including the following: 
‘‘(1) SURVEILLANCE.— 
‘‘(A) IN
GENERAL.—The Secretary shall 
provide for surveillance efforts to collect thor-
ough, complete, and high-quality epidemiologic 
information on stillbirths, including through the 
utilization of existing surveillance systems (in-
cluding the National Vital Statistics System 
(NVSS) and other appropriately equipped birth 
defects surveillance programs). 
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‘‘(B) STANDARD PROTOCOL FOR SURVEIL-
LANCE.—The Secretary, in consultation with 
qualified individuals and organizations deter-
mined appropriate by the Secretary, to include 
representatives of health and advocacy organiza-
tions, State and local governments, public health 
officials, and health researchers, shall— 
‘‘(i) provide for the continued develop-
ment and dissemination of a standard pro-
tocol for stillbirth data collection and sur-
veillance; and 
‘‘(ii) not less than every 5 years, re-
view and, as appropriate, update such pro-
tocol. 
‘‘(2) POSTMORTEM DATA COLLECTION AND EVAL-
UATION.—The Secretary, in consultation with quali-
fied individuals and organizations determined appro-
priate by the Secretary, to include representatives of 
health professional organizations, shall— 
‘‘(A) upon the enactment of this section, 
and not less than every 5 years thereafter, review 
existing guidelines for increasing and improving 
the quality and completeness of postmortem still-
birth evaluation and related data collection, in-
cluding conducting and reimbursing autopsies, 
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placental histopathology, and cytogenetic testing; 
and 
‘‘(B) develop strategies for implementing 
such guidelines and addressing any barriers to 
implementation of such guidelines. 
‘‘(b) SUDDEN UNEXPECTED INFANT DEATH ACTIVI-
TIES.—The Secretary, acting through the Director of the 
Centers for Disease Control and Prevention, shall continue 
to carry out activities of the Centers relating to sudden un-
expected infant death (SUID), including the following: 
‘‘(1) SURVEILLANCE.— 
‘‘(A) IN
GENERAL.—The Secretary shall 
provide 
for 
surveillance 
efforts 
to 
gather 
sociodemographic, death scene investigation, clin-
ical history, and autopsy information on SUID 
cases through the review of existing records on 
SUID, including through the utilization of exist-
ing surveillance systems (including the national 
child death review case reporting system and 
SUID case registries). 
‘‘(B) STANDARD PROTOCOL FOR SURVEIL-
LANCE.—The Secretary, in consultation with 
qualified individuals and organizations deter-
mined appropriate by the Secretary, to include 
representatives of health and advocacy organiza-
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tions, State and local governments, and public 
health officials, shall— 
‘‘(i) provide for the continued develop-
ment and dissemination of a standard pro-
tocol for SUID data reporting and surveil-
lance; and 
‘‘(ii) not less than every 5 years, re-
view and, as appropriate, update such pro-
tocol. 
‘‘(C) GOALS
FOR
ENHANCING
SURVEIL-
LANCE.—In carrying out activities under this 
subsection, the Secretary shall seek to accomplish 
the following goals: 
‘‘(i) Collecting thorough, complete, and 
high-quality death scene investigation data, 
clinical history, and autopsy findings. 
‘‘(ii) Collecting standardized informa-
tion about the environmental and medical 
circumstances of death (including the sleep 
environment and quality of the death scene 
investigation). 
‘‘(iii) 
Supporting 
multidisciplinary 
infant death reviews, such as those per-
formed by child death review committees, to 
collect and review the information and clas-
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sify and characterize SUID using a stand-
ardized classification system. 
‘‘(iv) Facilitating the sharing of infor-
mation to improve the public reporting of 
surveillance and vital statistics describing 
the epidemiology of SUID. 
‘‘(2) STANDARD PROTOCOL FOR DEATH SCENE 
INVESTIGATION.— 
‘‘(A) IN GENERAL.—The Secretary, in con-
sultation with forensic pathologists, medical ex-
aminers, coroners, medicolegal death scene inves-
tigators, law enforcement personnel, emergency 
medical technicians and paramedics, public 
health agencies, and other individuals and orga-
nizations determined appropriate by the Sec-
retary, shall— 
‘‘(i) provide for the continued dissemi-
nation of a standard death scene investiga-
tion protocol; and 
‘‘(ii) not less than every 5 years, re-
view and, as appropriate, update such pro-
tocol. 
‘‘(B) CONTENT
OF
DEATH
SCENE
PRO-
TOCOL.—The protocol disseminated under sub-
paragraph (A) shall include information on— 
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‘‘(i) the current and past medical his-
tory of the infant; 
‘‘(ii) family medical history; 
‘‘(iii) the circumstances surrounding 
the death, including any suspicious cir-
cumstances; 
‘‘(iv) the sleep position and sleep envi-
ronment of the infant; and 
‘‘(v) any accidental or environmental 
factors associated with death. 
‘‘(3) GUIDELINES
FOR
A
STANDARD
AUTOPSY 
PROTOCOL.—The Secretary, in consultation with the 
Attorney General of the United States, forensic pa-
thologists, medical examiners, coroners, pediatric pa-
thologists, 
pediatric 
cardiologists, 
pediatric 
neuropathologists, geneticists, infectious disease spe-
cialists, and other individuals and organizations de-
termined appropriate by the Secretary, shall— 
‘‘(A) develop guidelines for a standard au-
topsy protocol for SUID; and 
‘‘(C) not less than every 5 years, review 
and, as appropriate, update such guidelines. 
‘‘(4) TRAINING.—The Secretary, in consultation 
with the Attorney General of the United States, 
may— 
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‘‘(A) conduct or support— 
‘‘(i) training activities for medical ex-
aminers, coroners, medicolegal death scene 
investigators, law enforcement personnel, 
and emergency medical technicians or para-
medics concerning death scene investiga-
tions for SUID, including the use of stand-
ard death scene investigation protocols dis-
seminated under paragraph (2); and 
‘‘(ii) training activities for medical ex-
aminers, coroners, and forensic pathologists 
concerning standard autopsy protocols for 
SUID developed under paragraph (3); and 
‘‘(B) make recommendations to health pro-
fessional organizations regarding the integration 
of protocols disseminated or developed under this 
subsection, and training conducted or supported 
under this paragraph, into existing training and 
continuing education programs. 
‘‘(c) SUDDEN UNEXPLAINED DEATH IN CHILDHOOD 
ACTIVITIES.—The Secretary, acting through the Director of 
the Centers for Disease Control and Prevention, shall con-
tinue to carry out activities of the Centers relating to sud-
den unexpected death in childhood (SUDC), including the 
following: 
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‘‘(1) SURVEILLANCE.—The Secretary, in con-
sultation with the Director of the National Institutes 
of Health, shall provide for surveillance efforts to 
gather sociodemographic, death scene investigation, 
clinical history, and autopsy information on SUDC 
cases through the review of existing records on SUDC, 
including through the utilization of existing surveil-
lance systems (including the Sudden Death in the 
Young Registry). 
‘‘(2) GUIDELINES
FOR
A
STANDARD
AUTOPSY 
PROTOCOL.—The Secretary, in consultation with the 
Attorney General of the United States, forensic pa-
thologists, medical examiners, coroners, pediatric pa-
thologists, 
pediatric 
cardiologists, 
pediatric 
neuropathologists, geneticists, infectious disease spe-
cialists, and other individuals and organizations de-
termined appropriate by the Secretary, may— 
‘‘(A) develop guidelines for a standard au-
topsy protocol for SUDC; and 
‘‘(B) not less than every 5 years, review 
and, as appropriate, update such guidelines. 
‘‘(3) REVIEW OF APPLICABILITY OF PROGRAMS 
AND ACTIVITIES.—Not later than 18 months after the 
date of enactment of this section, the Secretary, acting 
through the Director of the Centers for Disease Con-
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trol and Prevention, and in consultation with the Di-
rector of the National Institutes of Health, shall com-
plete an evaluation of the possibility of carrying out 
or intensifying, with respect to SUDC, the types of 
programs and activities that are authorized to be car-
ried out under subsection (b) with respect to SUID. 
‘‘(d) REPORT TO CONGRESS.—Not later than 2 years 
after the date of enactment of this Act, the Secretary, acting 
through the Director of the Centers for Disease Control and 
Prevention, shall submit to the Congress a report on the 
implementation of this section. Such report shall include— 
‘‘(1) the results of the evaluation under sub-
section (c)(3); and 
‘‘(2) a description of any activities that— 
‘‘(A) are being carried out by the Centers 
for Disease Control and Prevention in consulta-
tion with the National Institutes of Health relat-
ing to stillbirth, SUID, or SUDC; and 
‘‘(B) are in addition to the activities being 
carried out pursuant to this section. 
‘‘(e) DEFINITIONS.—In this section: 
‘‘(1) The term ‘stillbirth’ means a spontaneous 
fetal death that— 
‘‘(A) occurs at 20 or more weeks gestation; 
or 
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‘‘(B) if the age of the fetus is not known, in-
volves a fetus weighing 350 grams or more. 
‘‘(2) The terms ‘sudden unexpected infant death’ 
and ‘SUID’ mean the death of an infant less than 1 
year of age— 
‘‘(A) which occurs suddenly and unexpect-
edly; and 
‘‘(B) whose cause— 
‘‘(i) is not immediately obvious prior 
to investigation; and 
‘‘(ii) is either explained upon inves-
tigation or remains unexplained. 
‘‘(3) The terms ‘sudden unexplained death in 
childhood’ and ‘SUDC’ mean the sudden death of a 
child 1 year of age or older which remains unex-
plained after a thorough case investigation that in-
cludes— 
‘‘(A) a review of the clinical history and 
circumstances of death; and 
‘‘(B) performance of a complete autopsy 
with appropriate ancillary testing. 
‘‘(f) FUNDING.—This section shall not be construed to 
increase the amount of appropriations that are authorized 
to be appropriated for any fiscal year.’’. 
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Union Calendar No. 417 
113TH CONGRESS 
2D SESSION 
H. R. 669 
[Report No. 113–557] 
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. 
JULY 24, 2014 
Reported with an amendment, committed to the Com-
mittee of the Whole House on the State of the Union, 
and ordered to be printed 
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