[Congressional Bills 116th Congress]
[From the U.S. Government Publishing Office]
[S. 1130 Engrossed Amendment House (EAH)]
<DOC>
In the House of Representatives, U. S.,
December 10, 2020.
Resolved, That the bill from the Senate (S. 1130) entitled ``An Act
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.'', do pass with the following
AMENDMENT:
Strike all after section 1 and insert the following:
SEC. 2. AMENDMENT TO THE PUBLIC HEALTH SERVICE ACT.
Part B of title XI of the Public Health Service Act (42 U.S.C. 241
et seq.) is amended--
(1) in the part heading, by striking ``sudden infant death
syndrome'' and inserting ``sudden unexpected infant death,
sudden infant death syndrome, and sudden unexpected death in
childhood''; and
(2) by inserting before section 1122 the following:
``SEC. 1121. ADDRESSING SUDDEN UNEXPECTED INFANT DEATH AND SUDDEN
UNEXPECTED DEATH IN CHILDHOOD.
``(a) In General.--The Secretary may develop, support, or maintain
programs or activities to address sudden unexpected infant death and
sudden unexpected death in childhood, including by--
``(1) continuing to support the Sudden Unexpected Infant
Death and Sudden Death in the Young Case Registry of the
Centers for Disease Control and Prevention and other fatality
case reporting systems that include data pertaining to sudden
unexpected infant death and sudden unexpected death in
childhood, as appropriate, including such systems supported by
the Health Resources and Services Administration, in order to--
``(A) increase the number of States and
jurisdictions participating in such registries or
systems; and
``(B) improve the utility of such registries or
systems, which may include--
``(i) making summary data available to the
public in a timely manner on the internet
website of the Department of Health and Human
Services, in a manner that, at a minimum,
protects personal privacy to the extent
required by applicable Federal and State law;
and
``(ii) making the data submitted to such
registries or systems available to researchers,
in a manner that, at a minimum, protects
personal privacy to the extent required by
applicable Federal and State law; and
``(2) awarding grants or cooperative agreements to States,
Indian Tribes, and Tribal organizations for purposes of--
``(A) supporting fetal and infant mortality and
child death review programs for sudden unexpected
infant death and sudden unexpected death in childhood,
including by establishing such programs at the local
level;
``(B) improving data collection related to sudden
unexpected infant death and sudden unexpected death in
childhood, including by--
``(i) improving the completion of death
scene investigations and comprehensive
autopsies that include a review of clinical
history and circumstances of death with
appropriate ancillary testing; and
``(ii) training medical examiners,
coroners, death scene investigators, law
enforcement personnel, emergency medical
technicians, paramedics, emergency department
personnel, and others who perform death scene
investigations with respect to the deaths of
infants and children, as appropriate;
``(C) identifying, developing, and implementing
best practices to reduce or prevent sudden unexpected
infant death and sudden unexpected death in childhood,
including practices to reduce sleep-related infant
deaths;
``(D) increasing the voluntary inclusion, in
registries established for the purpose of conducting
research on sudden unexpected infant death and sudden
unexpected death in childhood, of samples of tissues or
genetic materials from autopsies that have been
collected pursuant to Federal or State law and for
which the parent or guardian has provided informed
consent for inclusion in such registries;
``(E) disseminating information and materials to
health care professionals and the public on risk
factors that contribute to sudden unexpected infant
death and sudden unexpected death in childhood, which
may include information on risk factors that contribute
to sleep-related sudden unexpected infant death or
sudden unexpected death in childhood; or
``(F) providing information, referrals, or peer or
follow-up support services to families who have
experienced sudden unexpected infant death or sudden
unexpected death in childhood.
``(b) Application.--To be eligible to receive a grant or
cooperative agreement under subsection (a)(2), a State, Indian Tribe,
or Tribal organization shall submit to the Secretary an application at
such time, in such manner, and containing such information as the
Secretary may require, including information on how such State will
ensure activities conducted under this section are coordinated with
other federally-funded programs to reduce infant and child mortality,
as appropriate.
``(c) Technical Assistance.--The Secretary shall provide technical
assistance to States, Tribes, and Tribal organizations receiving a
grant or cooperative agreement under subsection (a)(2) for purposes of
carrying out the program in accordance with this section.
``(d) Reporting Forms.--
``(1) In general.--The Secretary shall, as appropriate,
encourage the use of sudden unexpected infant death and sudden
unexpected death in childhood reporting forms developed in
collaboration with the Centers for Disease Control and
Prevention to improve the quality of data submitted to the
Sudden Unexpected Infant Death and Sudden Death in the Young
Case Registry, and other fatality case reporting systems that
include data pertaining to sudden unexpected infant death and
sudden unexpected death in childhood.
``(2) Update of forms.--The Secretary shall assess whether
updates are needed to the sudden unexpected infant death
investigation reporting form used by the Centers for Disease
Control and Prevention in order to improve the use of such form
with other fatality case reporting systems supported by the
Department of Health and Human Services, and shall make such
updates as appropriate.
``(e) Definitions.--In this section:
``(1) Sudden infant death syndrome.--The term `sudden
infant death syndrome' means a sudden unexpected infant death
that remains unexplained after a thorough case investigation.
``(2) Sudden unexpected infant death.--The term `sudden
unexpected infant death' means the sudden death of an infant
under 1 year of age that when first discovered did not have an
obvious cause. Such term includes such deaths that are
explained, as well as deaths that remain unexplained (which are
known as sudden infant death syndrome).
``(3) Sudden unexpected death in childhood.--The term
`sudden unexpected death in childhood' means the sudden death
of a child who is at least 1 year of age but not more than 17
years of age that, when first discovered, did not have an
obvious cause. Such term includes such deaths that are
explained, as well as deaths that remain unexplained (which are
known as sudden unexplained death in childhood).
``(4) Sudden unexplained death in childhood.--The term
`sudden unexplained death in childhood' means a sudden
unexpected death in childhood that remains unexplained after a
thorough case investigation.
``(f) Authorization of Appropriations.--For the purpose of carrying
out this section, there is authorized to be appropriated $12,000,000
for each of fiscal years 2022 through 2026.''.
SEC. 3. REPORT TO CONGRESS.
(a) In General.--Not later than 2 years after the date of enactment
of this Act and biennially thereafter, the Secretary of Health and
Human Services shall submit to the Committee on Health, Education,
Labor, and Pensions of the Senate and the Committee on Energy and
Commerce of the House of Representatives a report that contains, with
respect to the reporting period--
(1) information regarding the incidence and number of
sudden unexpected infant death and sudden unexpected death in
childhood (including the number of such infant and child deaths
that remain unexplained after investigation), including, to the
extent practicable--
(A) a summary of such information by racial and
ethnic group, and by State;
(B) aggregate information obtained from death scene
investigations and autopsies; and
(C) recommendations for reducing the incidence of
sudden unexpected infant death and sudden unexpected
death in childhood;
(2) an assessment of the extent to which various approaches
of reducing and preventing sudden unexpected infant death and
sudden unexpected death in childhood have been effective; and
(3) a description of the activities carried out under
section 1121 of the Public Health Service Act (as added by
section 2).
(b) Definitions.--In this section, the terms ``sudden unexpected
infant death'' and ``sudden unexpected death in childhood'' have the
meanings given such terms in section 1121 of the Public Health Service
Act (as added by section 2).
Attest:
Clerk.
116th CONGRESS
2d Session
S. 1130
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AMENDMENT