[Congressional Record Volume 160, Number 128 (Tuesday, September 9, 2014)]
[House]
[Pages H7341-H7343]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
SUDDEN UNEXPECTED DEATH DATA ENHANCEMENT AND AWARENESS ACT
Mr. BURGESS. Mr. Speaker, I move to suspend the rules and pass the
bill (H.R. 669) 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, as amended.
The Clerk read the title of the bill.
The text of the bill is as follows:
H.R. 669
Be it enacted by the Senate and House of Representatives 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 following:
``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
Centers relating to stillbirth, including the following:
``(1) Surveillance.--
``(A) In general.--The Secretary shall provide for
surveillance efforts to collect thorough, complete, and high-
quality epidemiologic information on stillbirths, including
through the utilization of existing surveillance systems
(including the National Vital Statistics System (NVSS) and
other appropriately equipped birth defects surveillance
programs).
``(B) Standard protocol for surveillance.--The Secretary,
in consultation with qualified individuals and organizations
determined appropriate by the Secretary, to include
representatives of health and advocacy organizations, State
and local governments, public health officials, and health
researchers, shall--
``(i) provide for the continued development and
dissemination of a standard protocol for stillbirth data
collection and surveillance; and
``(ii) not less than every 5 years, review and, as
appropriate, update such protocol.
``(2) Postmortem data collection and evaluation.--The
Secretary, in consultation with qualified individuals and
organizations determined appropriate 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 stillbirth evaluation and related data collection,
including conducting and reimbursing autopsies, 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 Activities.--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 unexpected
infant death (SUID), including the following:
``(1) Surveillance.--
``(A) In general.--The Secretary shall provide for
surveillance efforts to gather sociodemographic, death scene
investigation, clinical history, and autopsy information on
SUID cases through the review of existing records on SUID,
including through the utilization of existing surveillance
systems (including the national child death review case
reporting system and SUID case registries).
``(B) Standard protocol for surveillance.--The Secretary,
in consultation with
[[Page H7342]]
qualified individuals and organizations determined
appropriate by the Secretary, to include representatives of
health and advocacy organizations, State and local
governments, and public health officials, shall--
``(i) provide for the continued development and
dissemination of a standard protocol for SUID data reporting
and surveillance; and
``(ii) not less than every 5 years, review and, as
appropriate, update such protocol.
``(C) Goals for enhancing surveillance.--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 information 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 performed by child death review committees, to
collect and review the information and classify and
characterize SUID using a standardized classification system.
``(iv) Facilitating the sharing of information 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 consultation with
forensic pathologists, medical examiners, coroners,
medicolegal death scene investigators, law enforcement
personnel, emergency medical technicians and paramedics,
public health agencies, and other individuals and
organizations determined appropriate by the Secretary,
shall--
``(i) provide for the continued dissemination of a standard
death scene investigation protocol; and
``(ii) not less than every 5 years, review and, as
appropriate, update such protocol.
``(B) Content of death scene protocol.--The protocol
disseminated under subparagraph (A) shall include information
on--
``(i) the current and past medical history of the infant;
``(ii) family medical history;
``(iii) the circumstances surrounding the death, including
any suspicious circumstances;
``(iv) the sleep position and sleep environment 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 pathologists, medical examiners,
coroners, pediatric pathologists, pediatric cardiologists,
pediatric neuropathologists, geneticists, infectious disease
specialists, and other individuals and organizations
determined appropriate by the Secretary, shall--
``(A) develop guidelines for a standard autopsy 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--
``(A) conduct or support--
``(i) training activities for medical examiners, coroners,
medicolegal death scene investigators, law enforcement
personnel, and emergency medical technicians or paramedics
concerning death scene investigations for SUID, including the
use of standard death scene investigation protocols
disseminated under paragraph (2); and
``(ii) training activities for medical examiners, coroners,
and forensic pathologists concerning standard autopsy
protocols for SUID developed under paragraph (3); and
``(B) make recommendations to health professional
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 continue to carry out
activities of the Centers relating to sudden unexpected death
in childhood (SUDC), including the following:
``(1) Surveillance.--The Secretary, in consultation 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 surveillance 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 pathologists, medical examiners,
coroners, pediatric pathologists, pediatric cardiologists,
pediatric neuropathologists, geneticists, infectious disease
specialists, and other individuals and organizations
determined appropriate by the Secretary, may--
``(A) develop guidelines for a standard autopsy 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 Control and Prevention, and in
consultation with the Director of the National Institutes of
Health, shall complete 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 carried
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 subsection
(c)(3); and
``(2) a description of any activities that--
``(A) are being carried out by the Centers for Disease
Control and Prevention in consultation with the National
Institutes of Health relating 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
``(B) if the age of the fetus is not known, involves 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 unexpectedly; and
``(B) whose cause--
``(i) is not immediately obvious prior to investigation;
and
``(ii) is either explained upon investigation 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 unexplained after a thorough case
investigation that includes--
``(A) a review of the clinical history and circumstances of
death; and
``(B) performance of a complete autopsy with appropriate
ancillary testing.
``(f) Funding.--No additional funds are authorized to be
appropriated for the purpose of carrying out this section,
and this section shall be carried out using amounts otherwise
available for such purpose.''.
The SPEAKER pro tempore. Pursuant to the rule, the gentleman from
Texas (Mr. Burgess) and the gentleman from New Jersey (Mr. Pallone)
each will control 20 minutes.
The Chair recognizes the gentleman from Texas.
{time} 1745
General Leave
Mr. BURGESS. Mr. Speaker, I ask unanimous consent that all Members
may have 5 legislative days in which to revise and extend their remarks
and to insert extraneous material into the Record on the bill.
The SPEAKER pro tempore. Is there objection to the request of the
gentleman from Texas?
There was no objection.
Mr. BURGESS. Mr. Speaker, I yield myself such time as I may consume.
Mr. Speaker, I rise today in support of H.R. 669, the Sudden
Unexpected Death Data Enhancement and Awareness Act, introduced by my
colleague, Mr. Pallone of New Jersey.
Prevention of stillbirth, sudden unexpected infant death, and sudden
unexplained death in children depends upon the collection of data
related to the biological, social, and environmental factors associated
with these outcomes.
The Centers for Disease Control and Prevention collects data through
existing surveillance systems in order to identify the extent of the
problem and risk factors.
Sudden unexpected infant death rates decreased in the 1990s during
the Back to Sleep campaign, but have remained unchanged since then. It
is time for us to address this problem.
H.R. 669 authorizes activities at the Centers for Disease Control to
help improve the understanding of stillbirth, sudden unexpected infant
death, and sudden unexplained death in children by improving data
collection, increasing surveillance strategies, and setting guidelines
and protocols for death scene investigations.
I ask my colleagues to support this important piece of legislation,
and I reserve the balance of my time.
Mr. PALLONE. Mr. Speaker, I yield myself such time as I may consume.
I rise with great pride to be speaking in support of H.R. 669, the
Sudden Unexpected Death Data Enhancement and Awareness Act.
This has been an issue that I have worked on for many years in
Congress. In particular, it is one of the many bills that I partnered
with my late
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friend, Senator Frank Lautenberg. I also want to thank Congressman
Peter King as well, since he worked with me on this.
Stillbirth and unexpected infant death affect tens of thousands of
families every year, according to data from CDC, and sudden infant
death syndrome is the leading cause of death for infants up to 12
months old. Unfortunately, too many families in this country suffer
these tragic events, but what makes matters even worse is their
struggle with the process to help find answers.
Currently, there is a lack of comprehensive, high-quality data to
best understand why these events occur in the first place. The intent
of the bill has always been to better utilize the Federal Government's
activities in this area.
Specifically, it would expand and standardize surveillance and data
collection for stillbirth and sudden unexpected infant death and sudden
unexplained death in childhood at the Centers for Disease Control and
Prevention.
In addition, it would improve the development of standard protocols
for use in death scene investigations and autopsies surrounding these
deaths and also allow the Secretary of HHS to conduct training
activities regarding these protocols.
The bill also requires CDC, in consultation with NIH, to submit a
report to Congress on current activities related to stillbirth, SUID,
and SUDC and evaluate the possibility of expanding programs related to
SUDC specifically.
Let me close, Mr. Speaker, by personally thanking Laura Crandall,
cofounder and codirector of the CJ Foundation's SUDC program. This
issue hits close to home for Laura, but in the face of tragedy, she
decided to work to help others who also suffered.
She has been a great advocate for this bill and has spread awareness
of SUDC in communities all across the country. I thank her for her
strength, determination, and dedication.
Mr. Speaker, this bill isn't everything I think the CDC can be doing
to address the needs of families across the country, but it represents
a critical step on a very tragic issue that deserves our attention.
I urge my colleagues to support its passage, and I yield back the
balance of my time.
Mr. BURGESS. Mr. Speaker, I urge my colleagues to support the bill,
and I yield back the balance of my time.
Mr. WAXMAN. Mr. Speaker, I rise in support of H.R. 669, the Sudden
Unexpected Death Data Enhancement and Awareness Act.
Stillbirths--the loss of a pregnancy after 20 weeks of gestation--
occur for approximately 26,000 women in the United States each year.
The Centers for Disease Control and Prevention (CDC) estimate there are
4,000 sudden unexplained infant deaths (SUID) in children under age one
each year as well. Sudden Unexplained Deaths in Childhood (SUDC) occur
in children over the age of 12 months, with an estimated incidence of
1.2 deaths per 100,000 children.
CDC currently oversees a number of initiatives to collect data on
these tragic deaths. H.R. 669 would help to improve surveillance on
SUID, SUDC, and stillbirths. Improving data on the number and root
causes of these unexplained deaths will be a critical step in advancing
our efforts to reduce them.
I want to commend the sponsors of this legislation, Ranking Member
Pallone and Congressman King, for their leadership on this issue. I
would also like to thank Chairman Upton, Chairman Pitts, and all of our
staff for helping to bring this bill through the Energy and Commerce
Committee and to the floor today.
I support this legislation and urge my colleagues to do the same.
The SPEAKER pro tempore. The question is on the motion offered by the
gentleman from Texas (Mr. Burgess) that the House suspend the rules and
pass the bill, H.R. 669, as amended.
The question was taken; and (two-thirds being in the affirmative) the
rules were suspended and the bill, as amended, was passed.
A motion to reconsider was laid on the table.
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