[Congressional Bills 113th Congress]
[From the U.S. Government Publishing Office]
[H.R. 669 Introduced in House (IH)]
113th CONGRESS
1st Session
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.
_______________________________________________________________________
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
_______________________________________________________________________
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.
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. 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 following:
``PART W--SUDDEN UNEXPECTED INFANT DEATH AND SUDDEN UNEXPLAINED DEATH
IN CHILDHOOD
``SEC. 399OO. DEFINITIONS.
``In this part:
``(1) Administrator.--The term `Administrator' means the
Administrator of the Health Resources and Services
Administration.
``(2) Death scene investigator.--The term `death scene
investigator' means an individual certified 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 meaning given to
such term in section 2, except that such term includes tribes
and tribal organizations (as such terms are defined in section
4 of the Indian Self-Determination and Education Assistance
Act).
``(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 explained as
well as unexplained causes.
``(6) Sudden unexplained death in childhood; sudc.--The
terms `sudden unexplained death in childhood' and `SUDC' mean
the sudden death of a child older than 1 year of age which
remains unexplained after a thorough case investigation that
includes a review of the clinical history and circumstances of
death and performance of a complete autopsy with appropriate
ancillary testing.
``SEC. 399OO-1. DEATH SCENE INVESTIGATION AND AUTOPSY.
``(a) Investigations.--
``(1) Grants.--The Secretary, acting through the Director,
shall award grants to States to enable such States to improve
the completion of comprehensive death scene investigations for
sudden unexpected infant death and sudden unexplained death in
childhood.
``(2) Application.--To be eligible to receive a grant under
paragraph (1), a State shall submit to the Secretary an
application at such time, in such manner, and containing such
information as the Secretary may require.
``(3) Use of funds.--
``(A) In general.--A State shall use amounts
received under a grant under paragraph (1) to improve
the completion of comprehensive death scene
investigations for sudden unexpected infant death and
sudden unexplained death in childhood, including
through the awarding of subgrants to local
jurisdictions to be used to implement standard death
scene investigation protocols for sudden unexpected
infant death and sudden unexplained death in childhood
and conduct comprehensive, standardized autopsies.
``(B) Protocols.--A standard death scene protocol
implemented under subparagraph (A) shall include the
obtaining of information on current and past medical
history of the infant/child, the circumstances
surrounding the death including any suspicious
circumstances, the sleep position and sleep environment
of the infant/child, and whether there were any
accidental or environmental factors associated with the
death. The Director in consultation with medical
examiners, coroners, death scene investigators, law
enforcement, emergency medical technicians and
paramedics, public health agencies, and other
individuals or groups determined necessary by the
Director shall develop a standard death scene protocol
for children from 1 to 4 years of age, using existing
protocols developed for SUID.
``(b) Autopsies.--
``(1) In general.--The Secretary, acting through the
Director, shall award grants to States to enable such States to
increase the rate at which comprehensive, standardized
autopsies are performed for sudden unexpected infant death and
sudden unexplained death in childhood.
``(2) Application.--To be eligible to receive a grant under
paragraph (1), a State shall submit to the Secretary an
application at such time, in such manner, and containing such
information as the Secretary may require.
``(3) Comprehensive autopsy.--For purposes of this
subsection, a comprehensive autopsy shall include a full
external and internal examination, including microscopic
examination, of all major organs and tissues including the
brain, complete radiographs, vitreous fluid analysis, photo
documentation, selected microbiology when indicated, metabolic
testing, and toxicology screening of the infant or child
involved.
``(4) Guidelines.--The Director, in consultation with board
certified forensic pathologists, medical examiners, coroners,
pediatric pathologists, pediatric cardiologists, pediatric
neuropathologists and geneticists, and other individuals and
groups determined necessary by the Director shall develop
national guidelines for a standard autopsy protocol for sudden
unexpected infant death and sudden unexplained death in
childhood. The Director shall ensure that the majority of such
consultation is with board certified forensic pathologists,
medical examiners, and coroners. The Director is encouraged to
seek additional input from child abuse experts, bereavement
specialists, parents, and public health agencies on nonmedical
aspects of the autopsy guidelines. In developing such protocol,
the Director shall consider autopsy protocols used by State and
local jurisdictions.
``(c) Study on Genetic Testing.--The Director, in consultation with
medical examiners, coroners, forensic pathologists, geneticists,
researchers, public health officials, and other individuals and groups
determined necessary by the Director, shall commission a study to
determine the benefits and appropriateness of genetic testing for
infant and early childhood deaths that remain unexplained after a
complete death scene investigation and comprehensive, standardized
autopsy. Such study shall include recommendations on developing a
standard protocol for use in determining when to utilize genetic
testing and standard protocols for the collection and storage of
specimens suitable for genetic testing.
``(d) Authorization of Appropriations.--There is authorized to be
appropriated $8,000,000 for each of fiscal years 2014 through 2018 to
carry out this section.
``SEC. 399OO-2. TRAINING.
``(a) Grants.--The Secretary, acting through the Director, shall
award grants to eligible entities for the provision 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; and
``(2) submit to the Secretary an application at such time,
in such manner, and containing such information as the
Secretary may require.
``(c) Use of Funds.--An eligible entity shall use amounts received
under a grant under this section to--
``(1) provide training to medical examiners, coroners,
death scene investigators, law enforcement personnel, and
emergency medical technicians or paramedics concerning death
scene investigations for SUID and SUDC, including the use of
standard death scene investigation protocols that include
information on the current and past medical history of the
infant/child, the circumstances surrounding the death including
any suspicious circumstances, the sleep position and sleep
environment of the infant/child, and whether there were any
accidental or environmental factors associated with the death;
``(2) provide training directly to individuals who are
responsible for conducting and reviewing death scene
investigations for sudden unexpected infant death and sudden
unexplained death in childhood;
``(3) provide training to multidisciplinary teams,
including teams that have a medical examiner or 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;
``(5) in the case of State and local government entity
grantees, obtain equipment, including computer equipment, to
aid in the completion of standard death scene investigation; or
``(6) conduct training activities for medical examiners,
coroners, and forensic pathologists concerning standard autopsy
protocols for sudden unexpected infant death and sudden
unexplained death in childhood and integrate the training under
the grant on standard autopsy protocols in SUID and SUDC into
professional accreditation and training programs.
``(d) Authorization of Appropriations.--There is authorized to be
appropriated to carry out this section $2,000,000 for each of fiscal
years 2014 through 2018.
``SEC. 399OO-3. CHILD DEATH REVIEW.
``(a) Prevention.--
``(1) Core capacity grants.--The Secretary, acting through
the Administrator, shall award grants to States to build and
strengthen State capacity and implement State and local child
death review programs and prevention strategies.
``(2) Planning grants.--The Secretary, acting through the
Administrator, shall award planning grants to States that have
no existing child death review program or States in which the
only child death review programs are State-based, for the
development of local child death review programs and prevention
strategies.
``(3) Application.--To be eligible to receive a grant under
paragraph (1) or (2), a State shall submit 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 technical assistance to assist
States--
``(A) in developing the capacity for comprehensive
child death review programs, including the development
of best practices for the implementation of such
programs; and
``(B) in maintaining the national child death case
reporting system.
``(b) Authorization of Appropriations.--There is authorized to be
appropriated $7,000,000 for each of fiscal years 2014 through 2018 to
carry out subsection (a).
``SEC. 399OO-4. ENHANCING THE NATIONAL CHILD DEATH CASE REPORTING
SYSTEM.
``(a) In General.--The Secretary, acting through the Director and
in consultation with the national child death case reporting system,
national health organizations, and professional societies with
experience and expertise relating to reducing SUID and SUDC, shall
modify such national death case reporting system, in accordance with
subsection (b), to assure that such system provides for population-
based data for ages 0 through 4 years of age and facilitates the
understanding of the root causes, rates, and trends of SUID and SUDC
with respect to such ages.
``(b) Goals of Modified National Child Death Case Reporting
System.--The modifications under subsection (a) to the national child
death case reporting system shall facilitate the collection, analysis,
and dissemination of data by--
``(1) implementing a surveillance and monitoring system
based on thorough and complete death scene investigation data,
clinical history, and autopsy findings;
``(2) collecting standardized information about the
environmental, medical, genetic, and social circumstances of
death (including sleep environment and quality of the death
scene investigation) if determined that such may correlate with
infant and early childhood deaths, as well as information from
other law enforcement, medical examiner, coroner, emergency
medical services (EMS), medical records, and vital records (if
possible);
``(3) supporting multidisciplinary infant and early
childhood death reviews such as those performed by child death
review committees to collect and review the standardized
information and accurately and consistently classify and
characterize SUID and SUDC;
``(4) facilitating the sharing of information to improve
the public reporting of surveillance and vital statistics
describing the epidemiology of SUID and SUDC; and
``(5) utilizing current infrastructure of existing
surveillance systems.
``(c) Authorization of Appropriations.--There is authorized to be
appropriated to carry out this section $3,000,000 for each of fiscal
years 2014 through 2018.
``SEC. 399OO-5. PUBLIC AWARENESS AND EDUCATION CAMPAIGN.
``(a) Establishment.--The Secretary, acting through the
Administrator and in consultation with the Director and the Director of
the National Institutes of Health, shall establish and implement a
culturally competent research-based public health awareness and
education campaign to provide information that is focused on decreasing
the risk factors that contribute to sudden unexpected infant death and
sudden unexplained death in childhood, including educating individuals
and organizations about safe sleep environments, sleep positions, and
reducing exposure to smoking during pregnancy and after birth.
``(b) Targeted Populations.--The campaign under subsection (a)
shall be designed to reduce health disparities through the targeting of
populations with high rates of sudden unexpected infant death and
sudden unexplained death in childhood.
``(c) Consultation.--In establishing and implementing the campaign
under subsection (a), the Secretary shall consult with national
organizations representing health care providers, including nurses and
physicians, parents, child care providers, children's advocacy and
safety organizations, maternal and child health programs and women's,
infants', and children's nutrition professionals, and other individuals
and groups determined necessary by the Secretary for such establishment
and implementation.
``(d) Grants.--
``(1) In general.--In carrying out the campaign under
subsection (a), the Secretary shall award grants to national
organizations, State and local health departments, and
community-based organizations for the conduct of education and
outreach programs for health care providers, parents, child
care providers, public health agencies, and community
organizations.
``(2) Application.--To be eligible to receive a grant under
paragraph (1), an entity shall submit to the Secretary an
application at such time, in such manner, and containing such
information as the Secretary may require.
``(e) Authorization of Appropriations.--There is authorized to be
appropriated to carry out this section $7,000,000 for fiscal year 2014
and $5,000,000 for each of fiscal years 2015 through 2018.
``SEC. 399OO-6. GRANTS FOR SUPPORT SERVICES.
``(a) In General.--The Secretary, acting through the Administrator,
shall award grants to national organizations, State and local health
departments, and community-based organizations, for the provisions of
support services to families who have had a child die of sudden
unexpected infant death and sudden unexplained death in childhood.
``(b) Application.--To be eligible to receive a grant under
subsection (a), an entity shall submit to the Secretary 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 to provide grief counseling, education, home
visits, 24-hour hotlines, and 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 subsection (a), the
Secretary shall give preference to community-based applicants that have
a proven history of effective direct support services and interventions
for sudden unexpected infant death and sudden unexplained death in
childhood and can demonstrate experience through collaborations and
partnerships for delivering services throughout a State or region.
``(e) Authorization of Appropriations.--There is authorized to be
appropriated to carry out this section $500,000 for each of fiscal
years 2014 through 2018.
``SEC. 399OO-7. EVALUATION OF STATE AND REGIONAL NEEDS.
``(a) In General.--The Secretary, acting through the Director and
in consultation with the Administrator, shall conduct a needs
assessment on a State and regional basis of the availability of
personnel, training, technical assistance, and resources for
investigating and determining sudden unexpected infant death and sudden
unexplained death in childhood and make recommendations to increase
collaboration on a State and regional level for investigation and
determination.
``(b) Authorization of Appropriations.--There is authorized to be
appropriated to carry out this section, $250,000 for each of fiscal
years 2014 through 2018.''.
SEC. 3. ENHANCING PUBLIC HEALTH ACTIVITIES RELATED TO STILLBIRTH.
Part P of title III of the Public Health Service Act (42 U.S.C.
280g et seq.) is amended by adding at the end the following:
``SEC. 399V-6. ENHANCING PUBLIC HEALTH ACTIVITIES RELATED TO
STILLBIRTH.
``(a) Grants.--The Secretary, acting through the Director of the
Centers for Disease Control and Prevention, shall award grants to
eligible States and metropolitan areas to enhance and expand
surveillance efforts to collect thorough and complete epidemiologic
information on stillbirths, including through the utilization of the
infrastructure of existing surveillance systems (including vital
statistics systems).
``(b) Eligibility.--To be eligible to receive a grant under
subsection (a), an entity shall--
``(1) be a State or a major metropolitan area (as defined
by the Secretary); and
``(2) submit to the Secretary an application at such time,
in such manner, and containing such information as the
Secretary may require, including--
``(A) an assurance that the applicant will
implement the standardized surveillance protocol
developed under subsection (c); and
``(B) a description of the infrastructure of
existing surveillance systems in the State or major
metropolitan area, as applicable.
``(c) Surveillance Protocol.--The Secretary, acting through the
Director of the Centers for Disease Control and Prevention, shall--
``(1) provide for the continued development and
dissemination of a standard protocol for stillbirth data
collection and surveillance, in consultation with
representatives of health and advocacy organizations, State and
local governments, and other interested entities determined
appropriate by the Secretary;
``(2) monitor trends and identify potential risk factors
for further study using existing sources of surveillance data
and expanded sources of data from targeted surveillance
efforts, and methods for the evaluation of stillbirth
prevention efforts; and
``(3) develop and evaluate methods to link existing data to
provide more complete information for research into the causes
and conditions associated with stillbirth.
``(d) Postmortem Evaluation and Data Collection.--The Secretary,
acting through the Director of the Centers for Disease Control and
Prevention and in consultation with physicians, nurses, pathologists,
geneticists, parents, and other groups determined necessary by the
Director, shall develop guidelines for increasing the performance and
data collection of postmortem stillbirth evaluation, including
conducting and reimbursing autopsies, placental histopathology, and
cytogenetic testing. The guidelines should take into account cultural
competency issues related to postmortem stillbirth evaluation.
``(e) Public Health Programmatic Activities Related to
Stillbirth.--The Secretary, acting through the Director of the Centers
for Disease Control and Prevention, shall--
``(1) develop behavioral surveys for women experiencing
stillbirth, using existing State-based infrastructure for
pregnancy-related information gathering; and
``(2) increase the technical assistance provided to States,
Indian tribes, territories, and local communities to enhance
capacity for improved investigation of medical and social
factors surrounding stillbirth events.
``(f) Public Education and Prevention Programs.--The Secretary,
acting through the Director of the Centers for Disease Control and
Prevention and in consultation with health care providers, public
health organizations, maternal and child health programs, parents, and
other groups deemed necessary by the Director, shall directly or
through grants, cooperative agreements, or contracts to eligible
entities, develop and conduct evidence-based public education and
prevention programs aimed at reducing the occurrence of stillbirth
overall and addressing the racial and ethnic disparities in its
occurrence, including--
``(1) public education programs, services, and
demonstrations which are designed to increase general awareness
of stillbirths; and
``(2) the development of tools for the education of health
professionals and women concerning the known risk factors for
stillbirth, promotion of fetal movement awareness, and the
importance of early and regular prenatal care to monitor the
health and development of the fetus up to and during delivery.
``(g) Task Force.--The Secretary, in consultation with the Director
of the National Institutes of Health, the Director of the Centers for
Disease Control and Prevention, and health care providers, researchers,
parents, and other groups deemed necessary by the Directors, shall
establish a task force to develop a national research plan to determine
the causes of, and how to prevent, stillbirth.
``(h) Grants for Support Services.--
``(1) In general.--The Secretary, acting through the
Administrator of the Health Resources and Services
Administration, shall award grants to national organizations,
State and local health departments, and community-based
organizations, for the provisions of support services to
families who have experienced stillbirth.
``(2) Application.--To be eligible to receive a grant under
subsection (a), an entity shall submit to the Secretary an
application at such time, in such manner, and containing such
information as the Secretary may require.
``(3) Use of funds.--Amounts received under a grant awarded
under subsection (a) may be used to provide grief counseling,
education, home visits, 24-hour hotlines, and support groups
for families who have experienced stillbirth.
``(4) Preference.--In awarding grants under subsection (a),
the Secretary shall give preference to applicants that are
community-based organizations that have a proven history of
providing effective direct support services and interventions
related to stillbirths and can demonstrate experience through
collaborations and partnerships for delivering services
throughout a State or region.
``(i) Definitions.--In this section:
``(1) The term `State' has the meaning given to such term
in section 2, except that such term includes tribes and tribal
organizations (as such terms are defined in section 4 of the
Indian Self-Determination and Education Assistance Act).
``(2) The term `stillbirth' means a spontaneous, not
induced, pregnancy loss 20 weeks or later after gestation, or
if the age of the fetus is not known, then a fetus weighing 350
grams or more.
``(j) Authorization of Appropriations.--There is authorized to be
appropriated to carry out this section, $3,000,000 for each of fiscal
years 2014 through 2018.''.
SEC. 4. REPORT TO CONGRESS.
Not later than 2 years after the date of enactment of this Act, 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
Congress a report describing the progress made in implementing this Act
(and the amendments made by this Act).
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