[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\
---------------------------------------------------------------------------
    \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.
---------------------------------------------------------------------------
    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.
---------------------------------------------------------------------------
    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]