[House Report 117-210]
[From the U.S. Government Publishing Office]
117th Congress } { Report
HOUSE OF REPRESENTATIVES
1st Session } { 117-210
======================================================================
STILLBIRTH HEALTH IMPROVEMENT AND EDUCATION FOR AUTUMN ACT OF 2021
_______
December 8, 2021.--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. 5487]
The Committee on Energy and Commerce, to whom was referred
the bill (H.R. 5487) to improve research and data collection on
stillbirths, and for other purposes, 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.............................................. 3
II. Background and Need for the Legislation.......................... 3
III. Committee Hearings............................................... 4
IV. Committee Consideration.......................................... 4
V. Committee Votes.................................................. 5
VI. Oversight Findings............................................... 5
VII. New Budget Authority, Entitlement Authority, and Tax Expenditures 5
VIII.Federal Mandates Statement....................................... 5
IX. Statement of General Performance Goals and Objectives............ 5
X. Duplication of Federal Programs.................................. 5
XI. Committee Cost Estimate.......................................... 6
XII. Earmarks, Limited Tax Benefits, and Limited Tariff Benefits...... 6
XIII.Advisory Committee Statement..................................... 6
XIV. Applicability to Legislative Branch.............................. 6
XV. Section-by-Section Analysis of the Legislation................... 6
XVI. Changes in Existing Law Made by the Bill, as Reported............ 7
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 ``Stillbirth Health Improvement and
Education for Autumn Act of 2021'' or the ``SHINE for Autumn Act of
2021''.
SEC. 2. STILLBIRTH RESEARCH AND DATA COLLECTION IMPROVEMENTS.
Title III of the Public Health Service Act is amended by inserting
after section 317L-1 of such Act (42 U.S.C. 247b-13a) the following:
``SEC. 317L-2. STILLBIRTH RESEARCH AND DATA COLLECTION IMPROVEMENTS.
``(a) Stillbirth Surveillance and Risk Factor Studies.--
``(1) In general.--The Secretary may award grants to States
for purposes of--
``(A) conducting surveillance and collecting data
with respect to stillbirths;
``(B) building State and local public health capacity
to assess stillbirth data; and
``(C) collecting and reporting data on stillbirth
risk factors, including any quantifiable outcomes with
respect to such risk factors.
``(2) Authorization of appropriations.--To carry out this
subsection, there is authorized to be appropriated $5,000,000
for each of fiscal years 2022 through 2026.
``(b) Guidelines and Educational Awareness Materials.--
``(1) In general.--The Secretary shall--
``(A) issue guidelines to State departments of health
and State and local vital statistics units on--
``(i) collecting data on stillbirth from
health care providers, and with the consent of
the family involved, including any such data
with respect to the clinical history,
postmortem examination, and placental
pathology;
``(ii) sharing such data with Federal
agencies determined appropriate by the Director
of the Centers for Disease Control and
Prevention; and
``(iii) improving processes and training
related to stillbirth data collection and
reporting to ensure standardization and
completeness of data; and
``(B) develop, and make publicly available,
educational awareness materials on stillbirths.
``(2) Consultation.--In carrying out paragraph (1), the
Secretary may consult with--
``(A) national health care professional associations;
``(B) national associations representing State and
local public health officials;
``(C) organizations that assist families with burial
support and bereavement services;
``(D) nurses and nurse practitioners;
``(E) obstetricians and gynecologists;
``(F) pediatricians;
``(G) maternal-fetal medicine specialists;
``(H) midwives;
``(I) mental health professionals;
``(J) statisticians;
``(K) individuals who have experienced a stillbirth;
and
``(L) advocacy organizations representing such
individuals.
``(3) Authorization of appropriations.--To carry out this
subsection, there is authorized to be appropriated $1,000,000
for each of fiscal years 2022 through 2026.
``(c) Vital Statistics Unit Defined.--In this section, the term
`vital statistics unit' means the entity that is responsible for
maintaining vital records for a State, or a political subdivision of
such State, including official records of live births, deaths, fetal
deaths, marriages, divorces, and annulments.''.
SEC. 3. PERINATAL PATHOLOGY FELLOWSHIPS.
The Public Health Service Act is amended by inserting after section
1122 of such Act (42 U.S.C. 300c-12) the following:
``SEC. 1123. IMPROVING PERINATAL PATHOLOGY.
``(a) In General.--The Secretary shall establish and implement, or
incorporate into an existing training program, a Perinatal Pathology
Fellowship Program or a Postdoctoral Research Fellowship on Factors
Associated with Stillbirth Program to--
``(1) provide training in perinatal autopsy pathology;
``(2) conduct research on, and improve data collection
through fetal autopsies with respect to, stillbirth; and
``(3) address challenges in stillbirth education, research,
and data collection.
``(b) Authorization of Appropriations.--There are authorized to be
appropriated to carry out this section $3,000,000 for each of fiscal
years 2022 through 2026.''.
SEC. 4. REPORTS.
(a) Educational Guidelines Report.--
(1) In general.--Not later than five years after the date of
enactment of this Act, the Secretary of Health and Human
Services shall publish on a public website of the Department of
Health and Human Services a report with educational guidelines
on stillbirth and stillbirth risk factors.
(2) Contents.--Such report shall include, to the extent
practicable and appropriate, the guidelines issued and
educational awareness materials developed under section 317L-2
of the Public Health Service Act, as added by section 2 of this
Act.
(b) Progress Report.--Not later than five years after the date of
enactment of this Act, the Secretary of Health and Human Services shall
submit to the Congress a comprehensive report on the progress and
effectiveness of the Perinatal Pathology Fellowship Program established
under section 1123 of the Public Health Service Act, as added by
section 3 of this Act.
I. Purpose and Summary
H.R. 5487, the ``Stillbirth Health Improvement and
Education for Autumn Act of 2021,'' or the ``SHINE for Autumn
Act of 2021,'' seeks to improve research and data collection on
stillbirths by authorizing grants to states for surveillance
and data collection relating to stillbirth and stillbirth risk
factors, developing guidelines and educational materials for
State departments of health, and establishing a Perinatal
Pathology Fellowship Program at the National Institutes of
Health (NIH) to increase research on stillbirth. The
legislation authorizes $9 million for these activities for each
of fiscal years 2022 through 2026.
II. Background and Need for Legislation
Stillbirth affects one in 160 births--approximately 24,000
babies are stillborn in the United States each year.\1\ That is
10 times as many deaths as those cause by Sudden Infant Death
Syndrome (SIDS).\2 3\ Medical advances, including improved
prenatal care, have reduced the number of late and term
stillbirths, but the rate of early stillbirth has remained
relatively unchanged. Health disparities also play a key role
in stillbirth, as research conducted by the Centers for Disease
Control and Prevention (CDC) found that Black mothers were more
than twice as likely to experience stillbirth compared to
Hispanic and white mothers.\4\
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\1\Centers for Disease Control and Prevention, Stillbirth
(www.cdc.gov/ncbddd/stillbirth/facts.html) (Nov. 16, 2020).
\2\Centers for Disease Control and Prevention, Articles and Key
Findings about Stillbirth (https://www.cdc.gov/ncbddd/stillbirth/
articles.html) (Sept. 17, 2020).
\3\Centers for Disease Control and Prevention, Sudden Unexpected
Infant Death and Sudden Infant Death Syndrome (https://www.cdc.gov/
SIDS/) (Dec. 31, 2020).
\4\See Note 2.
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Despite these reductions in stillbirths, the causes of
stillbirth have not been explored extensively through research.
There are a number of factors for the lack of thorough research
in the United States and globally, including notably a lack of
uniformly collected data, a lack of consensus on interventions,
health disparities present in low-income communities or
countries, and a lack of willing participants in further
research.\5\ There are also social factors and stigma that
reduce the visibility of stillbirths, including the desire for
privacy by a family in mourning.\6\
---------------------------------------------------------------------------
\5\Joy E. Lawn, et al., 3.2 million stillbirths: epidemiology and
overview of the evidence review, BMC pregnancy and childbirth vol. 9
(https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2679408/) (2009).
\6\Id.
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H.R. 5487 is named in honor of Autumn Joy, who was
stillborn on July 8, 2011. The legislation seeks to bolster
research on stillbirths and stillbirth risk factors to help
lower the United States' stillbirth rate. H.R. 5487 would
provide resources to State and local health departments to help
improve data collection around stillbirths and increase
education and awareness around the issue of stillbirth in the
United States. The data collected pursuant to the legislation
is only intended for the purposes of informing public health
research and improving health outcomes related to stillbirths.
III. Committee Hearings
For the purposes of section 3(c) of rule XIII of the Rules
of the House of Representatives, the following hearing was used
to develop or consider H.R. 5487:
The Subcommittee on Health held a legislative hearing on
October 20, 2021, entitled ``Enhancing Public Health:
Legislation to Protect Children and Families.'' The
Subcommittee received testimony from the following witnesses:
Bruce L. Cassis, D.D.S., M.A.G.D.,
President, Academy of General Dentistry;
Raymond DuBois, M.D., Ph.D., Former
President, American Association for Cancer Research;
Donald M. Lloyd-Jones, M.D., Sc.M.,
President, American Heart Association;
Ellyn Miller, President and Founder,
Smashing Walnuts Foundation;
Rick Nolan, Former U.S. Representative (MN);
Jenny Radesky, M.D., Assistant Professor of
Pediatrics, University of Michigan Medical School; and
Stacey Stewart, President and CEO, March of
Dimes.
IV. Committee Consideration
Representatives Jaime Herrera Beutler (R-WA), Lucille
Roybal-Allard (D-CA), Kathy Castor (D-FL), and Markwayne Mullin
(R-OK) introduced H.R. 5487, the ``SHINE for Autumn Act of
2021,'' on October 5, 2021, and it was referred to the
Committee on Energy and Commerce. Subsequently, on October 6,
2021, H.R. 5487 was referred to the Subcommittee on Health. A
legislative hearing was held on the bill on October 20, 2021.
On November 4, 2021, the Subcommittee on Health met in open
markup session, pursuant to notice, to consider H.R. 5487 and 8
other bills. During consideration of the bill, an amendment
offered by Representative Mullin was agreed to by a voice vote.
Upon conclusion of consideration of the bill, the Subcommittee
on Health agreed to report the bill favorably to the full
Committee, amended, by a voice vote.
On November 17, 2021, the full Committee met in open markup
session, pursuant to notice, to consider H.R. 5487 and 11 other
bills. During consideration of the bill, an amendment offered
by Representative Mullin was agreed to by a voice vote. Upon
conclusion of consideration of the bill, the full Committee
agreed to a motion on final passage offered by Representative
Pallone (D-NJ), Chairman of the Committee, to order H.R. 5487
reported favorably to the House, as amended, by a voice vote.
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.
5487.
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.
The Committee has requested but not received from the
Director of the Congressional Budget Office a statement as to
whether this bill contains any new budget authority, spending
authority, credit authority, or an increase or decrease in
revenues or tax expenditures.
VIII. 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.
IX. 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
research and data collection on stillbirths.
X. Duplication of Federal Programs
Pursuant to clause 3(c)(5) of rule XIII, no provision of
H.R. 5487 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.
XI. 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.
XII. 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. 5487 contains no earmarks, limited
tax benefits, or limited tariff benefits.
XIII. Advisory Committee Statement
No advisory committee within the meaning of section 5(b) of
the Federal Advisory Committee Act was created by this
legislation.
XIV. 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.
XV. Section-by-Section Analysis of the Legislation
Section 1. Short title
Section 1 designates that the short title may be cited as
the ``Stillbirth Health Improvement and Education for Autumn
Act of 2021,'' or the ``SHINE for Autumn Act of 2021.''
Sec. 2. Stillbirth research and data collection improvements
Section 2 amends the Public Health Service Act, authorizing
$5 million for each of fiscal years 2022 through 2026 for the
Secretary of Health and Human Services (HHS) to award grants to
States for the purposes of (1) conducting surveillance and
collecting data with respect to stillbirths, (2) building State
and local public health capacity to assess stillbirth data, and
(3) collecting and reporting on stillbirth risk factors,
including any quantifiable outcomes with respect to such risk
factors.
Section 2 also directs the Secretary of HHS to issue
guidelines to State departments of health and State and local
vital statistics units on (1) collecting data on stillbirth
from health care providers, and with the consent of the family
involved, (2) sharing such relevant data with Federal agencies
determined appropriate by the CDC Director, and (3) improving
processes and training related to stillbirth data collection
and reporting to ensure standardization and completeness of
data. The Secretary of HHS is also required to develop and make
publicly available educational awareness materials on
stillbirths. In carrying out these activities, the Secretary of
HHS may consult with national health care professional
associations, national associations representing State and
local public health officials, organizations that assist
families with burial support and bereavement services, nurses
and nurse practitioners, obstetricians and gynecologists,
pediatricians, maternal-fetal medicine specialists, midwives,
mental health professionals, statisticians, individuals who
have experienced a stillbirth, and advocacy organizations
representing such individuals. This section authorizes $1
million for each of fiscal years 2022 through 2026 for those
purposes.
This section defines the term ``vital statistics unit'' as
the entity that is responsible for maintaining vital records
for a State, or a political subdivision of such State,
including official records of live births, deaths, fetal
deaths, marriages, divorces, and annulments.
Sec. 3. Perinatal Pathology Fellowships
Section 3 authorizes $3 million for each of fiscal years
2022 through 2026 for the Secretary of HHS to establish and
implement, or incorporate into an existing training program, a
Perinatal Pathology Fellowship Program, or a Postdoctoral
Research Fellowship on Factors Associated with Stillbirth
Program. These programs should aim to (1) provide training in
perinatal autopsy pathology, (2) conduct research on and
improve data collection through fetal autopsies with respect to
stillbirth, and (3) address challenges in stillbirth education,
research, and data collection.
Sec. 4. Reports
Section 4 directs the Secretary of HHS to, no later than
five years after enactment, publish on HHS's public website a
report with educational guidelines on stillbirth and stillbirth
risk factors. The report shall include, to the extent
practicable and appropriate, the guidelines issued and
educational awareness materials developed under Section 2 of
this legislation. This section also directs the Secretary of
HHS to submit to Congress a comprehensive report on the
progress and effectiveness of the Perinatal Pathology
Fellowship Program established under Section 3 of this
legislation.
XVI. 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 (new matter is
printed in italics and existing law in which no change is
proposed is shown in roman):
PUBLIC HEALTH SERVICE ACT
* * * * * * *
TITLE III--GENERAL POWERS AND DUTIES OF PUBLIC HEALTH SERVICE
* * * * * * *
Part B--Federal-State Cooperation
* * * * * * *
SEC. 317L-2. STILLBIRTH RESEARCH AND DATA COLLECTION IMPROVEMENTS.
(a) Stillbirth Surveillance and Risk Factor Studies.--
(1) In general.--The Secretary may award grants to
States for purposes of--
(A) conducting surveillance and collecting
data with respect to stillbirths;
(B) building State and local public health
capacity to assess stillbirth data; and
(C) collecting and reporting data on
stillbirth risk factors, including any
quantifiable outcomes with respect to such risk
factors.
(2) Authorization of appropriations.--To carry out
this subsection, there is authorized to be appropriated
$5,000,000 for each of fiscal years 2022 through 2026.
(b) Guidelines and Educational Awareness Materials.--
(1) In general.--The Secretary shall--
(A) issue guidelines to State departments of
health and State and local vital statistics
units on--
(i) collecting data on stillbirth
from health care providers, and with
the consent of the family involved,
including any such data with respect to
the clinical history, postmortem
examination, and placental pathology;
(ii) sharing such data with Federal
agencies determined appropriate by the
Director of the Centers for Disease
Control and Prevention; and
(iii) improving processes and
training related to stillbirth data
collection and reporting to ensure
standardization and completeness of
data; and
(B) develop, and make publicly available,
educational awareness materials on stillbirths.
(2) Consultation.--In carrying out paragraph (1), the
Secretary may consult with--
(A) national health care professional
associations;
(B) national associations representing State
and local public health officials;
(C) organizations that assist families with
burial support and bereavement services;
(D) nurses and nurse practitioners;
(E) obstetricians and gynecologists;
(F) pediatricians;
(G) maternal-fetal medicine specialists;
(H) midwives;
(I) mental health professionals;
(J) statisticians;
(K) individuals who have experienced a
stillbirth; and
(L) advocacy organizations representing such
individuals.
(3) Authorization of appropriations.--To carry out
this subsection, there is authorized to be appropriated
$1,000,000 for each of fiscal years 2022 through 2026.
(c) Vital Statistics Unit Defined.--In this section, the term
``vital statistics unit'' means the entity that is responsible
for maintaining vital records for a State, or a political
subdivision of such State, including official records of live
births, deaths, fetal deaths, marriages, divorces, and
annulments.
* * * * * * *
TITLE XI--GENETIC DISEASES, HEMOPHILIA PROGRAMS, AND SUDDEN INFANT
DEATH SYNDROME
* * * * * * *
Part B--Sudden Unexpected Infant Death, Sudden Infant Death Syndrome,
and Sudden Unexpected Death in Childhood
* * * * * * *
SEC. 1123. IMPROVING PERINATAL PATHOLOGY.
(a) In General.--The Secretary shall establish and implement,
or incorporate into an existing training program, a Perinatal
Pathology Fellowship Program or a Postdoctoral Research
Fellowship on Factors Associated with Stillbirth Program to--
(1) provide training in perinatal autopsy pathology;
(2) conduct research on, and improve data collection
through fetal autopsies with respect to, stillbirth;
and
(3) address challenges in stillbirth education,
research, and data collection.
(b) Authorization of Appropriations.--There are authorized to
be appropriated to carry out this section $3,000,000 for each
of fiscal years 2022 through 2026.
* * * * * * *
[all]