[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.

                          ____________________