[Congressional Record Volume 166, Number 209 (Thursday, December 10, 2020)]
[House]
[Pages H7132-H7133]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
SCARLETT'S SUNSHINE ON SUDDEN UNEXPECTED DEATH ACT
Mrs. DINGELL. Madam Speaker, I ask unanimous consent to take from the
Speaker's table the bill (S. 1130) 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, and ask
for its immediate consideration in the House.
The Clerk read the title of the bill.
The SPEAKER pro tempore. Is there objection to the request of the
gentlewoman from Michigan?
There was no objection.
The text of the bill is as follows:
S. 1130
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 ``Scarlett's Sunshine on
Sudden Unexpected Death Act''.
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; or
``(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.
``(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 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 2021
through 2025.''.
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).
Amendment Offered by Mrs. Dingell
Mrs. DINGELL. Madam Speaker, I have an amendment at the desk.
The SPEAKER pro tempore. The Clerk will report the amendment.
The Clerk read as follows:
Strike all after section 1 and insert the following:
SECTION 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:
[[Page H7133]]
``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).
Mrs. DINGELL (during the reading). Madam Speaker, I ask unanimous
consent to dispense with the reading of the amendment.
The SPEAKER pro tempore. Is there objection to the request of the
gentlewoman from Michigan?
There was no objection.
The amendment was agreed to.
The bill was ordered to be read a third time, was read the third
time, and passed, and a motion to reconsider was laid on the table.
____________________