[Congressional Record Volume 166, Number 163 (Monday, September 21, 2020)]
[House]
[Pages H4620-H4623]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
SCARLETT'S SUNSHINE ON SUDDEN UNEXPECTED DEATH ACT
Mrs. DINGELL. Mr. Speaker, I move to suspend the rules and pass the
bill
[[Page H4621]]
(H.R. 2271) 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. 2271
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. ADDRESSING SUDDEN UNEXPECTED INFANT DEATH AND SUDDEN
UNEXPECTED DEATH IN CHILDHOOD.
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 systems; or
``(B) improve the utility of such 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 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 fatality case
reporting systems 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; 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
activities funded through the grant or cooperative agreement.
``(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) Support Services.--
``(1) In general.--The Secretary, acting through the
Administrator, shall award grants to national organizations,
State and local health departments, community-based
organizations, and nonprofit organizations for the provision
of support services to families who have had a child die of
sudden unexpected infant death or sudden unexpected death in
childhood.
``(2) Application.--To be eligible to receive a grant under
subsection (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.
``(3) Use of funds.--Amounts received under a grant awarded
under paragraph (1) may be used--
``(A) to provide grief counseling, education, home visits,
24-hour hotlines, or information, resources, and referrals;
``(B) to ensure access to grief and bereavement services;
``(C) to build capacity in professionals working with
families who experience a sudden death; or
``(D) to support peer-to-peer groups for families who have
lost a child to sudden unexpected infant death or sudden
unexpected death in childhood.
``(4) Preference.--In awarding grants under paragraph (1),
the Secretary shall give preference to applicants that--
``(A) have a proven history of effective direct support
services and interventions for sudden unexpected infant death
and sudden unexplained death in childhood; and
``(B) demonstrate experience through collaborations and
partnerships for delivering services described in paragraph
(3).
``(f) Definitions.--In this section:
``(1) Sudden unexpected infant death.--The term `sudden
unexpected infant death'--
``(A) means the sudden death of an infant under 1 year of
age that when first discovered did not have an obvious cause;
and
``(B) includes--
``(i) such deaths that are explained; and
``(ii) such deaths that remain unexplained (which are known
as sudden infant death syndrome).
``(2) Sudden unexpected death in childhood.--The term
`sudden unexpected death in childhood'--
``(A) 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; and
``(B) includes--
``(i) such deaths that are explained; and
``(ii) such deaths that remain unexplained (which are known
as sudden unexplained death in childhood).
``(3) 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.
``(g) Authorization of Appropriations.--For the purpose of
carrying out this section, there is authorized to be
appropriated $33,000,000 for each of fiscal years 2021
through 2024.''.
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 Energy and Commerce of the House of
Representatives and the Committee on Health, Education,
Labor, and Pensions of the Senate a report that contains,
with respect to the reporting period--
(1) information regarding the incidence and number of
sudden unexpected infant deaths and sudden unexpected deaths
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).
The SPEAKER pro tempore. Pursuant to the rule, the gentlewoman from
Michigan (Mrs. Dingell) and the gentleman from Montana (Mr. Gianforte)
each will control 20 minutes.
The Chair recognizes the gentlewoman from Michigan.
General Leave
Mrs. DINGELL. Mr. Speaker, I ask unanimous consent that all Members
[[Page H4622]]
may have 5 legislative days within which to revise and extend their
remarks and include extraneous material on H.R. 2271.
The SPEAKER pro tempore. Is there objection to the request of the
gentlewoman from Michigan?
There was no objection.
Mrs. DINGELL. Mr. Speaker, I yield myself such time as I may consume.
Mr. Speaker, I rise in strong support of H.R. 2271, the Scarlett's
Sunshine on Sudden Unexpected Death Act.
This bipartisan legislation would address the longstanding tragedies
of sudden unexpected infant deaths and sudden unexplained death in
childhood, which collectively cost thousands of lives each year and
result in heartbreak that no parent should ever have to experience.
Every year, about 3,500 babies die suddenly and unexpectedly in the
United States before reaching their first birthday, a category of
deaths known as sudden unexpected infant deaths.
{time} 1800
Additionally, approximately 400 children between the ages of 1 and 18
also die unexpectedly from sudden unexplained death in childhood.
More research into the causes of SUDC and SUID is needed, and this
legislation will redouble our efforts to better understand these
tragedies and prevent future deaths.
Scarlett's Sunshine on Unexpected Death Act will establish grants to
national and State organizations, as well as nonprofits, to improve
data collection related to these deaths.
The legislation will also provide additional resources to increase
education about safe sleep practices for children and infants, as well
as authorizing funding to ensure death reviews are completed for all
infant and child deaths.
It will provide support services for grieving families who are
impacted by these tragedies.
Mr. Speaker, improving data collection and analysis of SUDC and SUID
is a critical step in helping us understand and prevent these tragedies
and ensure that no parent has to live with the pain that comes with
losing a child.
Mr. Speaker, I thank Representatives Moore, Cole, and Herrera Beutler
for leading this legislation and their years of advocacy and efforts on
this issue.
Mr. Speaker, I also acknowledge Stephanie Zarecky. This legislation
is named after her daughter, Scarlett, who tragically passed as a
result of SUDC, and we wouldn't be here today without her leadership
and pushing for action.
Mr. Speaker, I urge my colleagues to support this legislation, and I
reserve the balance of my time.
Mr. GIANFORTE. Mr. Speaker, I yield myself such time as I may
consume.
Mr. Speaker, I rise today in support of H.R. 2271, Scarlett's
Sunshine on Sudden Unexpected Death Act, which was introduced by
Representatives Moore, Cole, Herrera Beutler, and others.
The mother of Scarlett Pauley, the namesake for this bill, told her
heartbreaking story to our committee back in January on the third
anniversary of her daughter's death.
No parent should have to find their child dead, and especially of
unknown causes.
This legislation would create grant programs at the Centers for
Disease Control to State and local agencies and nonprofits to address
sudden unexpected infant and childhood deaths.
These grants would support efforts to standardize investigations into
these deaths to better understand the medical causes that trigger these
tragic deaths.
With permission of the families, these grants would also support
genetic testing to research the causes of death.
Finally, the bill requires the Department of Health and Human
Services to help States and local governments review 100 percent of all
infant and child deaths and enter such reviews into a national
reporting system to help health researchers combat these tragedies.
Mr. Speaker, I urge adoption of this important legislation, and I
yield back the balance of my time.
Mrs. DINGELL. Mr. Speaker, if we can in any way prevent parents from
going through this horrific experience, we have an obligation to do so.
Mr. Speaker, I urge my colleagues to support this legislation, and I
yield back the balance of my time.
Mr. PALLONE. Mr. Speaker, I rise today to express my strong support
for H.R. 2271, the Scarlett's Sunshine on Unexpected Death Act. This
legislation is critical to improving our understanding of sudden
unexpected infant death.
Tragically, sudden unexpected infant death is the leading cause of
death for infants from one month to one year of age.
As we discuss the Scarlett's Sunshine on Unexpected Death Act, I want
to recognize all the parents who have turned their unimaginable grief
into progress and whom I have had the immense pleasure of working with
throughout the years.
This effort would not have been possible without parents like Laura
Crandel, who tragically lost her daughter Maria, and John Kahan who
lost his son Aaron to sudden unexpected infant death.
I have been working on the issue of sudden unexplained infant death
and sudden unexplained death in childhood for years now. In 2014, I was
fortunate enough to stand shoulder to shoulder with courageous moms
like Laura as President Obama signed the Sudden Unexpected Death Data
Enhancement and Awareness Act into law.
Today's bill builds upon these longstanding efforts by further
strengthening our existing understanding of sudden unexpected deaths in
infants and children, facilitating greater data collection and analysis
to improve prevention efforts, and supporting grieving parents and
families who have lost their son or daughter.
This bill takes a comprehensive approach to addressing one of the
most tragic issues facing families today, and will help develop and
deploy critical services to support them in their time of need. I am
proud of the efforts in this bill to not only further the science but
also support the families who have been impacted. While nothing can
cure their pain, these programs will support families in their darkest
hours.
I will continue to work on this issue until no more parents lose
their child to SIDS, and I urge my colleagues to support this critical
legislation.
Ms. MOORE. Mr. Speaker, I rise in strong support of the Scarlett's
Sunshine on Sudden Unexpected Death Act.
I thank Chairman Pallone, Ranking Member Walden, Subcommittee
Chairwoman Eshoo, Subcommittee Ranking Member Dr. Burgess,
Congresswoman Kuster, Congressman Tom Cole, Congresswoman Jamie Herrera
Beutler, Congressman Josh Gottheimer and so many others who have heard
the cries of hurting families that have experienced the tragic death of
a child, often unexpected and without explanation.
I want to thank the advocates, like John Kahan, Judy Rainey,
Stephanie Zarecky, Shelia Murphy, who have worked hard to help get this
bill to the floor.
This bill is named after one of those children--Scarlett Lillian
Pauley, Stephanie's daughter--who left this earth too soon. It is also
a story about her family--her mom and her dad (and now her little
sister) who took their personal pain and used it to begin to advocate
to help prevent other families from having to go through what they did.
January 8, 2017 is a day that Scarlett's family will never forget. To
this day, her family does not know what took Scarlett from them. But I
hope that September 21, 2020 is also a day they or other families that
have gone through this gut-wrenching experience will never forget. It's
the day when this House stepped up to the plate to help ensure that
their pain and loss was not in vain.
The statistics tell us that thousands of families experienced the
unexpected death of an infant or child each year, with SIDS just one in
this category. But we must never forget that this is not just about
statistics.
It's about the real families, the real tears that have been shed, the
real frustration when they can't get an answer for why even years after
the death, and the real fear that lives with them.
I remember sitting down with Scarlett's mom, Stephanie, earlier this
year after she had the privilege of sharing her story before the Energy
and Commerce Health subcommittee. She and her husband have a little
girl--I think she is 18 months or so--and I asked her if she still
lived in fear that the same thing would happen again--and the answer
was yes.
So today, we honor Scarlett and the others who lost their lives way
too soon by passing this bill to strengthen existing programs to help
get answers. To improve training so that these deaths are investigated
thoroughly and uniformly across the country. Without knowing why, we
can't act to stop these deaths.
I thank everyone who worked to help get us to this day and I urge my
colleagues to vote Yes on this bill.
The SPEAKER pro tempore. The question is on the motion offered by
[[Page H4623]]
the gentlewoman from Michigan (Mrs. Dingell) that the House suspend the
rules and pass the bill, H.R. 2271, 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.
____________________