[House Report 116-524]
[From the U.S. Government Publishing Office]


116th Congress }                                          { Report
                        HOUSE OF REPRESENTATIVES
  2d Session   }                                          { 116-524

======================================================================
 
           SCARLETT'S SUNSHINE ON SUDDEN UNEXPECTED DEATH ACT

                                _______
                                

 September 21, 2020.--Committed to the Committee of the Whole House on 
            the State of the Union and ordered to be printed

                                _______
                                

 Mr. Pallone, from the Committee on Energy and Commerce, submitted the 
                               following

                              R E P O R T

                        [To accompany H.R. 2271]

      [Including cost estimate of the Congressional Budget Office]

    The Committee on Energy and Commerce, to whom was referred 
the bill (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, 
having considered the same, reports favorably thereon with an 
amendment and recommends that the bill as amended do pass.

                                CONTENTS

                                                                   Page
   I. Purpose and Summary.............................................4
  II. Background and Need for the Legislation.........................4
 III. Committee Hearings..............................................6
  IV. Committee Consideration.........................................6
   V. Committee Votes.................................................6
  VI. Oversight Findings..............................................7
 VII. New Budget Authority, Entitlement Authority, and Tax Expenditure7
VIII. Congressional Budget Office Estimate............................7
  IX. Federal Mandates Statement......................................9
   X. Statement of General Performance Goals and Objectives...........9
  XI. Duplication of Federal Programs.................................9
 XII. Committee Cost Estimate.........................................9
XIII. Earmarks, Limited Tax Benefits, and Limited Tariff Benefits.....9
 XIV. Advisory Committee Statement....................................9
  XV. Applicability to Legislative Branch.............................9
 XVI. Section-by-Section Analysis of the Legislation..................9
XVII. Changes in Existing Law Made by the Bill, as Reported..........11

    The amendment is as follows:
    Strike all after the enacting clause and insert the 
following:

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).

                         I. Purpose and Summary

    H.R. 2271, the ``Scarlett's Sunshine on Unexpected Death 
Act'', was introduced on April 10, 2019, by Representatives 
Gwen Moore (D-WI), Tom Cole (R-OK), Jaime Herrera Beutler (R-
WA), Josh Gottheimer (D-NJ), Yvette Clarke (D-NY), Cathy 
McMorris Rodgers (R-WA), Debbie Wasserman Schultz (D-FL), Raul 
Grijalva (D-AZ), Ro Khanna (D-CA), Eleanor Holmes Norton (D-
DC), Peter King (R-NY), Betty McCollum (D-MN), Matt Cartwright 
(D-PA), and Suzan DelBene (D-WA).
    H.R. 2271 authorizes the Secretary of Health and Human 
Services (the Secretary) to continue to support the Sudden 
Unexplained Infant Death and Sudden Death in the Young Case 
Registry of the Centers for Disease Control and Prevention 
(CDC) and to issue grants for improving the completion of 
comprehensive death scene investigations for sudden unexplained 
infant death (SUID) and sudden unexplained death in children 
(SUDC), increasing the rate of comprehensive, standardized 
autopsies in cases of SUID and SUDC, and fostering the training 
of medical examiners, coroners, death scene investigators, law 
enforcement, and health professionals on standard death scene 
investigation protocols. H.R. 2271 also authorizes new grants 
through the Health Services and Resources Administration (HRSA) 
to develop and implement educational programs and outreach 
related to sleep-related SUID, and in addition to programs that 
deploy support services for families who have had a child die 
of SUID or SUDC.

                II. Background and Need for Legislation

    Sudden unexpected deaths, often described as sudden 
unexpected infant death (SUID) occurring to infants under the 
age of one year, and sudden unexpected death in childhood 
(SUIDC) occurring to children between the ages of one through 
18 years old, refer to cases where an infant or child dies 
suddenly without an obvious cause when first discovered.
    SUID is a broad term that includes deaths that occur due to 
sudden infant death syndrome (SIDS), accidental suffocation in 
a sleeping environment, metabolic diseases, cardiac 
arrhythmias, infections, and other deaths from unknown causes 
in children under the age of one year.\1\ SIDS is a diagnosis 
often made after a thorough investigation of an infant's death 
in which no cause of death can be determined.\2\ If there is 
some uncertainty about the cause of death--i.e., whether the 
death was caused by SIDS or another factor--a coroner or death 
examiner may note the cause of death as ``unknown.''\3\ 
Although the causes of SIDS are not often known, research 
suggests infants who die from SIDS often have brain 
abnormalities or defects (within a nerve cell network that 
sends signals to other nerve cells), and are exposed to outside 
stressors during a critical period of development.\4\ There is 
currently no screening tests to determine whether infants have 
certain brain abnormalities that may make them vulnerable to 
SIDS.\5\
---------------------------------------------------------------------------
    \1\National Institutes of Health, Common SIDS and SUID Terms and 
Definitions (2020) (https://safetosleep.nichd.nih.gov/safesleepbasics/
SIDS/Common).
    \2\National Institutes of Health, What is SIDS? (2020) 
(safetosleep.nichd.nih.gov/safesleepbasics/SIDS).
    \3\Id.
    \4\National Institutes of Health, Research on Possible Causes of 
SIDS (2020) (safetosleep.nichd.nih.gov/research/science/causes).
    \5\National Institutes of Health, What Causes SIDS? (2020) 
(safetosleep.nichd.nih.gov/safesleepbasics/causes).
---------------------------------------------------------------------------
    In 2017, there were 3,600 cases of SUID in the United 
States.\6\ Of these, approximately 1,400 were caused by 
SIDS.\7\ While SUID affects all demographic groups, significant 
racial disparities exist: American Indian, Alaska Native, and 
Black infants account for more than double the cases of SUID as 
White infants.\8\
---------------------------------------------------------------------------
    \6\Centers for Disease Control and Prevention, Sudden Unexpected 
Infant Death and Sudden Infant Death Syndrome Data and Statistics 
(2020) (www.cdc.gov/sids/data.htm).
    \7\Id.
    \8\Id.
---------------------------------------------------------------------------
    Even less is known about SUDC. While data points to 
approximately 500 children ages 1-19 dying each year without a 
known cause despite an autopsy and investigation, there is very 
little data collection on SUDC and no code to report SUDC.\9\ 
While the CDC has a standardized form to collect investigation 
data on SUID, there is no standardization of data collection 
for investigations into SUDC.\10\
---------------------------------------------------------------------------
    \9\Laura Crandall and Orrin Devinsky, Sudden Unexplained Death in 
Children, The Lancet Child and Adolescent Health, Vol. I, Issue 1, 8-9 
(2017).
    \10\Id.
---------------------------------------------------------------------------
    In response to these tragic data, H.R. 2271 would require 
CDC to revise the Sudden Unexplained Infant Death Investigation 
Reporting Form to include doll re-enactments and scene 
investigation information on sleep-related deaths for children 
under the age of five, and to align the form with the National 
Fatality Review Case Reporting System. The bill also authorizes 
CDC to make grants to improve the completion of comprehensive 
death scene investigations for SUID and SUDC, to increase the 
rate of comprehensive, standardized autopsies in cases of SUID 
and SUDC, and to train medical examiners, coroners, death scene 
investigators, law enforcement, and health professionals on 
standard death scene investigation protocols.
    The bill also authorizes grants through the HRSA to develop 
and implement education and outreach initiatives related to 
sleep-related SUID, and programs to develop and deploy support 
services for families who have had a child die of SUID or SUDC.

                        III. Committee Hearings

    For the purposes of section 103(i) of H. Res. 6 of the 
116th Congress, the following hearing was used to develop or 
consider H.R. 2271:
    The Subcommittee on Health held a legislative hearing on 
January 8, 2020, entitled ``Legislation to Improve Americans' 
Health Care Coverage and Outcomes'' to consider H.R. 2271, the 
``Scarlett's Sunshine on Sudden Unexpected Death Act''. The 
Subcommittee received testimony from the following witnesses:

Panel I:

           Lee Beers, M.D., President-Elect, American 
        Academy of Pediatrics
           Kenneth Mendez, President and Chief 
        Executive Officer, Asthma and Allergy Foundation of 
        America
           Stephanie Zarecky, Mother of Scarlett 
        Pauley, Ambassador Program and Public Relations 
        Manager, SUDC Foundation

Panel II:

           Matthew Cooper, M.D., Director, Kidney and 
        Pancreas Transplantation, Medical Director, Transplant 
        QAPI, Medstar Georgetown Transplant Institute, 
        Professor of Surgery, Georgetown University School of 
        Medicine
           Kevin Koser, Patient Advocate
           Fred Riccardi, President Medicare Rights 
        Center

                      IV. Committee Consideration

    Representative Moore (D-WI) introduced on April 10, 2019, 
H.R. 2271, the ``Scarlett's Sunshine on Sudden Unexpected Death 
Act'', and the bill was referred to the Committee on Energy and 
Commerce. Subsequently, H.R. 2271 was referred to the 
Subcommittee on Health on April 11, 2019. A legislative hearing 
was held on the bill on January 8, 2020.
    On March 11, 2020, the Subcommittee on Health met in open 
markup session, pursuant to notice, to consider H.R. 2271. 
During consideration of the bill, an amendment in the nature of 
a substitute (AINS) was offered by Ms. Blunt Rochester of 
Delaware. The Blunt Rochester AINS was agreed to by a voice 
vote. Subsequently, the Subcommittee on Health agreed by a 
voice vote to a motion by Ms. Eshoo, Chairwoman of the 
subcommittee, to forward favorably H.R. 2271, amended, to the 
full Committee on Energy and Commerce.
    On July 15, 2020, the full Committee met in virtual open 
markup session, pursuant to notice, to consider a committee 
print of the bill H.R. 2271, as amended by the Subcommittee on 
Health on March 11, 2020. No amendments were offered to the 
committee print of H.R. 2271. Consideration of the bill 
completed, the full Committee agreed to a motion on final 
passage by Mr. Pallone, Chairman of the committee, to order 
H.R. 2271 reported favorably to the House, as amended, by a 
voice vote, a quorum being present.

                           V. Committee Votes

    Clause 3(b) of rule XIII of the Rules of the House of 
Representatives requires the Committee to list each record vote 
on the motion to report legislation and amendments thereto. The 
Committee advises that there were no record votes taken on H.R. 
2271, including the motion for final passage of the bill.

                         VI. Oversight Findings

    Pursuant to clause 3(c)(1) of rule XIII and clause 2(b)(1) 
of rule X of the Rules of the House of Representatives, the 
oversight findings and recommendations of the Committee are 
reflected in the descriptive portion of the report.

 VII. New Budget Authority, Entitlement Authority, and Tax Expenditures

    Pursuant to 3(c)(2) of rule XIII of the Rules of the House 
of Representatives, the Committee adopts as its own the 
estimate of new budget authority, entitlement authority, or tax 
expenditures or revenues contained in the cost estimate 
prepared by the Director of the Congressional Budget Office 
pursuant to section 402 of the Congressional Budget Act of 
1974.

               VIII. Congressional Budget Office Estimate

                                     U.S. Congress,
                               Congressional Budget Office,
                                 Washington, DC, September 8, 2020.
Hon. Frank Pallone Jr.,
Chairman, Committee on Energy and Commerce,
House of Representatives, Washington, DC.
    Dear Mr. Chairman: The Congressional Budget Office has 
prepared the enclosed cost estimate for H.R. 2271, the 
Scarlett's Sunshine on Sudden Unexpected Death Act.
    If you wish further details on this estimate, we will be 
pleased to provide them. The CBO staff contact is Lisa Ramirez-
Branum.
            Sincerely,
                                         Phillip L. Swagel,
                                                          Director.
    Enclosure.

    
    

    H.R. 2271 would authorize the appropriation of $33 million 
annually over the 2021-2024 period for the Secretary of Health 
and Human Services (HHS) to carry out activities that address 
sudden unexpected infant death (SUID). Those activities would 
include awarding grants to states and other organizations to 
develop best practices to reduce SUID, support systems to 
report fatalities, and provide services to families who have 
had a child die of SUID. In 2019, approximately $2 million was 
allocated to support systems to report fatalities. The 
legislation also would require HHS to report biennially on the 
activities implemented related to SUID and to provide technical 
assistance to states receiving grants.
    Assuming appropriation of the authorized amounts and based 
on historical spending for similar activities, CBO estimates 
that implementing the legislation would cost $121 million over 
the 2020-2025 period. The costs of the legislation, detailed in 
Table 1, fall within budget function 550 (health).

               TABLE 1.--ESTIMATED INCREASES IN SPENDING SUBJECT TO APPROPRIATION UNDER H.R. 2271
----------------------------------------------------------------------------------------------------------------
                                                              By fiscal year, millions of dollars--
                                                ----------------------------------------------------------------
                                                   2020     2021     2022     2023     2024     2025   2020-2025
----------------------------------------------------------------------------------------------------------------
Estimated Authorization........................        0       33       33       33       33        0       132
Estimated Outlays..............................        0        8       25       31       32       25       121
----------------------------------------------------------------------------------------------------------------
Components may not sum to totals due to rounding.

    On November 27, 2019, CBO transmitted a cost estimate for 
S.1130, the Scarlett's Sunshine on Sudden Unexpected Death Act, 
as ordered reported by the Senate Committee on Health, 
Education, Labor and Pensions on November 27, 2019. The two 
pieces of legislation are similar. However, unlike S. 1130, 
H.R. 2271 would authorize HHS to provide grants to states to 
provide services to families who have had a child die of SUID. 
Thus, CBO's estimate of the cost of implementing H.R. 2271 is 
correspondingly higher.
    The CBO staff contact for this estimate is Lisa Ramirez-
Branum. The estimate was reviewed by Leo Lex, Deputy Director 
of Budget Analysis.

                     IX. Federal Mandates Statement

    The Committee adopts as its own the estimate of Federal 
mandates prepared by the Director of the Congressional Budget 
Office pursuant to section 423 of the Unfunded Mandates Reform 
Act.

        X. Statement of General Performance Goals and Objectives

    Pursuant to clause 3(c)(4) of rule XIII, the general 
performance goal or objective of this legislation is to improve 
the health of infants and children and help better understand 
and enhance awareness about unexpected sudden death in early 
life.

                  XI. Duplication of Federal Programs

    Pursuant to clause 3(c)(5) of rule XIII, no provision of 
H.R. 2271 is known to be duplicative of another Federal 
program, including any program that was included in a report to 
Congress pursuant to section 21 of Public Law 111-139 or the 
most recent Catalog of Federal Domestic Assistance.

                      XII. Committee Cost Estimate

    Pursuant to clause 3(d)(1) of rule XIII, the Committee 
adopts as its own the cost estimate prepared by the Director of 
the Congressional Budget Office pursuant to section 402 of the 
Congressional Budget Act of 1974.

   XIII. Earmarks, Limited Tax Benefits, and Limited Tariff Benefits

    Pursuant to clause 9(e), 9(f), and 9(g) of rule XXI, the 
Committee finds that H.R. 2271 contains no earmarks, limited 
tax benefits, or limited tariff benefits.

                   XIV. Advisory Committee Statement

    No advisory committee within the meaning of section 5(b) of 
the Federal Advisory Committee Act was created by this 
legislation.

                XV. Applicability to Legislative Branch

    The Committee finds that the legislation does not relate to 
the terms and conditions of employment or access to public 
services or accommodations within the meaning of section 
102(b)(3) of the Congressional Accountability Act.

          XVI. Section-by-Section Analysis of the Legislation


Section 1. Short title

    Section 1 designates that the short title may be cited as 
the ``Scarlett's Sunshine on Sudden Unexpected Death Act''.

Sec. 2. Addressing Sudden Unexpected Infant Death and Sudden 
        Unexplained Death in Childhood

    Section 2 amends the Public Health Service Act (42 U.S.C. 
241 et seq.) to authorize the Secretary to develop, support, or 
maintain programs or activities to address SUID and SUDC. Such 
programs and activities may include continuing to support the 
Sudden Unexplained Infant Death and Sudden Death in the Young 
Case Registry of the CDC and other fatality case reporting 
systems that include data pertaining to SUID and SUDC. Such 
systems also include those supported by HRSA in order to 
increase the number of participating States and jurisdictions 
or improve the utility of such systems by making summary data 
available to the public in a timely manner on the internet 
website of the U.S. Department of Health and Human Services in 
a manner that protects personal privacy.
    The Secretary is also authorized to award grants or 
cooperative agreements to States, Tribes, and Tribal 
organizations for five purposes. Grants may be used for the 
purpose of supporting and establishing fetal and infant 
mortality and child death review programs for SUIC and SUDC at 
the local level. Second, grants may be used for the purpose of 
improving data collection related to SUID and SUIC--such as 
improving the completion of death scene investigations and 
comprehensive autopsies, training medical examiners, coroners, 
death scene investigators, law enforcement personnel, emergency 
medical technicians, paramedics, emergency department 
personnel, and others who perform death scene investigations 
pertaining to SUID and SUDC. Third, grants may be used for 
identifying, developing, and implementing best practices to 
reduce or prevent SUID and SUDC, including practices to reduce 
sleep-related infant deaths. Grants may also be used for the 
purposes of increasing the voluntary inclusion of tissues or 
genetic materials from autopsies pertaining to SUID and SUDC. 
Finally grants may be used to disseminate information and 
materials to health care professionals and the public on SUID 
and SUDC risk factors, including sleep-related risk factors.
    To be eligible to receive a grant or cooperative agreement 
under this section, entities are required to submit an 
application at such time, in such manner, and containing such 
information as the Secretary shall require, including 
information on how the grant recipient will ensure activities 
conducted under this section are coordinated with other 
Federally-funded programs to reduce infant mortality. The 
Secretary is required to provide technical assistance to 
entities receiving a grant or cooperative agreement under this 
section.
    Section 2 also requires the Secretary to encourage the use 
of CDC-developed SUID and SUDC reporting forms 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. Further, the Secretary shall assess 
whether updates are needed to such forms.
    Finally, the Secretary is authorized to award grants to 
entities, such as national organizations, State and local 
health departments, community-based organizations, and 
nonprofit organizations for the provision of support services 
for grieving families and for capacity building for 
professionals working with grieving families. Such support 
services may include peer-to-peer counseling, education, home 
visits, 24-hour hotlines, informational materials and 
resources, referrals, and bereavement services. Preferences for 
such grants shall be given to entities that have a proven 
history of effective direct support services and interventions 
for SUID and SUDC.
    This section defines Sudden Unexpected Infant Death to mean 
the sudden death of an infant under one year of age that when 
first discovered did not have an obvious cause and includes 
such deaths that are later explained and such deaths that 
remain unexplained. It also defines Sudden Unexpected Death in 
Childhood to mean a sudden unexpected death in childhood that 
remains unexplained after a thorough case investigation.
    To carry out these activities, section 2 authorizes 
$33,000,000 for each of the fiscal years 2021 through 2024.

Sec. 3. Report to Congress

    Section 3 directs the Secretary to submit a report to the 
House Committee on Energy and Commerce and the Senate Committee 
on Health, Education, Labor, and Pensions no later than two 
years after the date of enactment of this Act. The report shall 
include information regarding the incidence and number of 
sudden unexpected infant deaths and sudden unexpected deaths in 
childhood, an assessment of the extent to which various 
approaches of reducing and preventing sudden unexpected infant 
death and sudden unexpected infant death in childhood have been 
effective, and a description of activities carried out under 
section 1121 of the Public Health Service Act.

      XVII. Changes in Existing Law Made by the Bill, as Reported

  In compliance with clause 3(e) of rule XIII of the Rules of 
the House of Representatives, changes in existing law made by 
the bill, as reported, are shown as follows (existing law 
proposed to be omitted is enclosed in black brackets, new 
matter is printed in italics, and existing law in which no 
change is proposed is shown in roman):

                       PUBLIC HEALTH SERVICE ACT




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  TITLE XI--GENETIC DISEASES, HEMOPHILIA PROGRAMS, AND SUDDEN INFANT 
DEATH SYNDROME

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Part B--[Sudden Infant Death Syndrome] Sudden Unexpected Infant Death, 
 Sudden Infant Death Syndrome, and Sudden Unexpected Death in Childhood


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.

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