[House Report 117-209]
[From the U.S. Government Publishing Office]


117th Congress   }                                      {       Report
                        HOUSE OF REPRESENTATIVES
 1st Session     }                                      {      117-209

======================================================================



 
                  IMPROVING THE HEALTH OF CHILDREN ACT

                                _______
                                

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. 5551]

    The Committee on Energy and Commerce, to whom was referred 
the bill (H.R. 5551) to amend title III of the Public Health 
Service Act to reauthorize the National Center on Birth Defects 
and Developmental Disabilities, 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..............................................  2
 II. Background and Need for the Legislation..........................  2
III. Committee Hearings...............................................  3
 IV. Committee Consideration..........................................  4
  V. Committee Votes..................................................  4
 VI. Oversight Findings...............................................  4
VII. New Budget Authority, Entitlement Authority, and Tax Expenditures  4 
VIII.Federal Mandates Statement.......................................  5
 IX. Statement of General Performance Goals and Objectives............  5
  X. Duplication of Federal Programs..................................  5
 XI. Committee Cost Estimate..........................................  5
XII. Earmarks, Limited Tax Benefits, and Limited Tariff Benefits......  5
XIII.Advisory Committee Statement.....................................  5 
XIV. Applicability to Legislative Branch..............................  5
 XV. Section-by-Section Analysis of the Legislation...................  5
XVI. Changes in Existing Law Made by the Bill, as Reported............  6

    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 ``Improving the Health of Children 
Act''.

SEC. 2. REAUTHORIZATION OF THE NATIONAL CENTER ON BIRTH DEFECTS AND 
                    DEVELOPMENTAL DISABILITIES.

  Section 317C of the Public Health Service Act (42 U.S.C. 247b-4) is 
amended--
          (1) by striking subsection (a)(4) and inserting the 
        following:
          ``(4) Specific programs.--The Secretary, acting through the 
        Director of the Center, shall continue to carry out programs 
        related to--
                  ``(A) early identification of developmental delay and 
                disability;
                  ``(B) birth defects;
                  ``(C) folic acid;
                  ``(D) cerebral palsy;
                  ``(E) intellectual disabilities;
                  ``(F) child development;
                  ``(G) newborn screening;
                  ``(H) autism;
                  ``(I) fragile X syndrome;
                  ``(J) fetal alcohol spectrum disorders and other 
                conditions related to prenatal substance use;
                  ``(K) pediatric genetic disorders;
                  ``(L) neuromuscular diseases;
                  ``(M) congenital heart defects;
                  ``(N) attention-deficit/hyperactivity disorder;
                  ``(O) stillbirth;
                  ``(P) Tourette Syndrome; or
                  ``(Q) any other relevant disease, disability, 
                disorder, or condition, as determined the Secretary.'';
          (2) in subsection (c), in the matter preceding paragraph (1), 
        by striking ``Not later than February 1'' and all that follows 
        through ``2 fiscal years--'' and inserting the following: ``The 
        Secretary shall submit biennially 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--''; and
          (3) in subsection (f), by striking ``such sums as may be 
        necessary for each of fiscal years 2003 through 2007'' and 
        inserting ``$186,010,000 for each of fiscal years 2022 through 
        2026''.

SEC. 3. EFFECTS OF FOLIC ACID IN PREVENTION OF BIRTH DEFECTS.

  Section 317J of the Public Health Service Act (42 U.S.C. 247b-11) is 
amended by striking subsection (e) (relating to authorization of 
appropriations).

                         I. Purpose and Summary

    H.R. 5551, the ``Improving the Health of Children Act,'' 
reauthorizes the National Center for Birth Defects and 
Developmental Disabilities at the Centers for Disease Control 
and Prevention (CDC) for fiscal years 2022 through 2026. The 
legislation would authorize CDC to carry out programs related 
to birth defects, folic acid, cerebral palsy, intellectual 
disabilities, child development, newborn screening, autism, 
fragile X syndrome, fetal alcohol syndrome, Tourette syndrome, 
pediatric genetic disorders, disability prevention, or other 
relevant diseases. The legislation authorizes $186,010,000 for 
these activities each of fiscal years 2022 through 2026.

                II. Background and Need for Legislation

    Every four and one-half minutes, a baby is born with a 
birth defect in the United States with nearly 1 in 33 babies 
affected by birth defects each year.\1\ Birth defects are 
structural changes present at birth that can affect almost any 
part or parts of the body (e.g., heart, brain, or foot). Birth 
defects can vary from mild to severe, which can affect the 
expected lifespan of a person with a birth defect.\2\ 
Developmental disabilities include limitations in function 
resulting from disorders of the developing nervous system.\3\ 
These limitations manifest during infancy or childhood as 
delays in reaching developmental milestones or as lack of 
function in one or multiple areas, including cognition, motor 
performance, vision, hearing, speech, and behavior.\4\
---------------------------------------------------------------------------
    \1\Centers for Disease Control and Prevention. Update on Overall 
Prevalence of Major Birth Defects--Atlanta, Georgia, 1978-2005. MMWR 
Morb Mortal Wkly Rep. 2008;57(1):1-5.
    \2\March of Dimes, Birth Defects & Other Health Conditions (https:/
/www.marchofdimes.org/complications/birth-defects-other-health-
conditions.aspx).
    \3\Institute of Medicine (US) Committee on Nervous System Disorders 
in Developing Countries. Neurological, Psychiatric, and Developmental 
Disorders: Meeting the Challenge in the Developing World (2001) 
(https://www.ncbi.nlm.nih.gov/books/NBK223473/).
    \4\Id.
---------------------------------------------------------------------------
    The National Center on Birth Defects and Developmental 
Disabilities (NCBDDD) within CDC was established in April 2001 
as a result of the enactment of the Children's Health Act of 
2000 (P.L. 106-310).\5\ The impetus for the establishment of 
the NCBDDD was a desire to focus public health work on enhanced 
research into the causes of birth defects and developmental 
disabilities; to help children to develop and reach their full 
potential; and to promote the health and well-being among 
people of all ages with disabilities, including blood 
disorders.\6\
---------------------------------------------------------------------------
    \5\National Center on Birth Defects and Developmental Disabilities, 
Our History (https://www.cdc.gov/ncbddd/aboutus/timeline/index.html).
    \6\Friends of NCBDDD, About Us (https://friendsofncbddd.org/about-
us/).
---------------------------------------------------------------------------
    While the center has continued to consistently receive 
appropriations from Congress, this legislation reauthorizes 
NCBDDD for the first time in 15 years. The legislation 
reinforces NCBDDD's core mission and authorizes an increase in 
funding that will enable the Center to continue to carry out 
more than a dozen infant and child health programs.\7\ The 
legislation is needed to continue to make critical investments 
to support the public health surveillance and research programs 
at NCBDDD, which are relied upon for information used to 
identify causes of birth defects, research opportunities, and 
improve the health of those living with birth defects or 
disabilities. The NCBDDD partners with states, academic 
centers, health care providers, and other external partners 
through numerous programs to advance their mission.\8\
---------------------------------------------------------------------------
    \7\National Center on Birth Defects and Developmental Disabilities, 
Fiscal Year 2020 Budget (https://www.cdc.gov/ncbddd/aboutus/budget/
index.html).
    \8\Friends of NCBDDD, NCBDDD State Fact Sheets (https://
friendsofncbddd.org/ncbddd-state-fact-sheets/).
---------------------------------------------------------------------------

                        III. Committee Hearings

    For the purposes of section 3(c) of rule XIII of the Rules 
of the House of Representatives, the following hearing[s] was 
[were] used to develop or consider H.R. 5551:
    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 Earl L. ``Buddy'' Carter (R-GA), Henry 
Cuellar (D-TX), Lori Trahan (D-MA), G.K. Butterfield (D-NC), 
and Richard Hudson (R-NC) introduced H.R. 5551, the ``Improving 
the Health of Children Act,'' on October 12, 2021, and it was 
referred to the Committee on Energy and Commerce. Subsequently, 
on October 13, 2021, H.R. 5551 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. 5551 and 8 
other bills. During consideration of the bill, an amendment in 
the nature of a substitute (AINS) offered by Representative 
Carter 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. 5551 and 11 other 
bills. No amendments were offered during consideration of the 
bill. 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. 5551 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. 
5551.

                         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 provide 
a five-year reauthorization of the National Center on Birth 
Defects and Developmental Disabilities at the Centers for 
Disease Control and Prevention.

                   X. Duplication of Federal Programs

    Pursuant to clause 3(c)(5) of rule XIII, no provision of 
H.R. 5551 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. 5551 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 ``Improving the Health of Children Act.''

Sec. 2. Reauthorization of the National Center on Birth Defects and 
        Developmental Disabilities

    Section 2 amends the Public Health Service Act (PHSA) to 
update the specific programs at the NCBDDD that the Secretary 
of Health and Human Services, acting through the Director of 
CDC, shall carry out, to include: early identification of 
developmental delay and disability; birth defects; folic acid; 
cerebral palsy; intellectual disabilities; child development; 
newborn screening; autism; fragile X syndrome; fetal alcohol 
spectrum disorders and other conditions related to prenatal 
substance use; pediatric genetic disorders; neuromuscular 
diseases; congenital heart defects; attention-deficit/
hyperactivity disorder; stillbirth; Tourette Syndrome; or any 
other relevant disease, disability, disorder, or condition, as 
determined by the Secretary.
    Section 2 also updates the biennially required report 
requirement by the Secretary of HHS to the Committee on Energy 
and Commerce of the House of Representatives and the Committee 
on Health, Education, Labor, and Pensions of the Senate.
    Section 2 further amends the authorization level for the 
activities of the NCBDDD to be $186,010,000 for each of fiscal 
years 2022 through 2026.

Sec. 3. Effects of folic acid in prevention of birth defects

    Section 3 amends the PHSA by striking the specific 
authorization of appropriations for folic acid research and 
prevention.

       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 (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




           *       *       *       *       *       *       *
TITLE III--GENERAL POWERS AND DUTIES OF PUBLIC HEALTH SERVICE

           *       *       *       *       *       *       *



Part B--Federal-State Cooperation

           *       *       *       *       *       *       *



    national center on birth defects and developmental disabilities

  Sec. 317C. (a) In General.--
          (1) National center.--There is established within the 
        Centers for Disease Control and Prevention a center to 
        be known as the National Center on Birth Defects and 
        Developmental Disabilities (referred to in this section 
        as the ``Center''), which shall be headed by a director 
        appointed by the Director of the Centers for Disease 
        Control and Prevention.
          (2) General duties.--The Secretary shall carry out 
        programs--
                  (A) to collect, analyze, and make available 
                data on birth defects, developmental 
                disabilities, and disabilities and health (in a 
                manner that facilitates compliance with 
                subsection (c)(2)), including data on the 
                causes of such defects and disabilities and on 
                the incidence and prevalence of such defects 
                and disabilities;
                  (B) to operate regional centers for the 
                conduct of applied epidemiological research on 
                the prevention of such defects and 
                disabilities;
                  (C) to provide information and education to 
                the public on the prevention of such defects 
                and disabilities;
                  (D) to conduct research on and to promote the 
                prevention of such defects and disabilities, 
                and secondary health conditions among 
                individuals with disabilities; and
                  (E) to support a National Spina Bifida 
                Program to prevent and reduce suffering from 
                the Nation's most common permanently disabling 
                birth defect.
          (3) Folic acid.--The Secretary shall carry out 
        section 317J through the Center.
          [(4) Certain programs.--
                  [(A) Transfers.--All programs and functions 
                described in subparagraph (B) are transferred 
                to the Center, effective upon the expiration of 
                the 180-day period beginning on the date of the 
                enactment of the Children's Health Act of 2000.
                  [(B) Relevant programs.--The programs and 
                functions described in this subparagraph are 
                all programs and functions that--
                          [(i) relate to birth defects; folic 
                        acid; cerebral palsy; intellectual 
                        disabilities; child development; 
                        newborn screening; autism; fragile X 
                        syndrome; fetal alcohol syndrome; 
                        pediatric genetic disorders; disability 
                        prevention; or other relevant diseases, 
                        disorders, or conditions as determined 
                        the Secretary; and
                          [(ii) were carried out through the 
                        National Center for Environmental 
                        Health as of the day before the date of 
                        the enactment of the Act referred to in 
                        subparagraph (A).
                  [(C) Related transfers.--Personnel employed 
                in connection with the programs and functions 
                specified in subparagraph (B), and amounts 
                available for carrying out the programs and 
                functions, are transferred to the Center, 
                effective upon the expiration of the 180-day 
                period beginning on the date of the enactment 
                of the Act referred to in subparagraph (A). 
                Such transfer of amounts does not affect the 
                period of availability of the amounts, or the 
                availability of the amounts with respect to the 
                purposes for which the amounts may be 
                expended.]
          (4) Specific programs.--The Secretary, acting through 
        the Director of the Center, shall continue to carry out 
        programs related to--
                  (A) early identification of developmental 
                delay and disability;
                  (B) birth defects;
                  (C) folic acid;
                  (D) cerebral palsy;
                  (E) intellectual disabilities;
                  (F) child development;
                  (G) newborn screening;
                  (H) autism;
                  (I) fragile X syndrome;
                  (J) fetal alcohol spectrum disorders and 
                other conditions related to prenatal substance 
                use;
                  (K) pediatric genetic disorders;
                  (L) neuromuscular diseases;
                  (M) congenital heart defects;
                  (N) attention-deficit/hyperactivity disorder;
                  (O) stillbirth;
                  (P) Tourette Syndrome; or
                  (Q) any other relevant disease, disability, 
                disorder, or condition, as determined the 
                Secretary.
  (b) Grants and Contracts.--
          (1) In general.--In carrying out subsection (a), the 
        Secretary may make grants to and enter into contracts 
        with public and nonprofit private entities.
          (2) Supplies and services in lieu of award funds.--
                  (A) Upon the request of a recipient of an 
                award of a grant or contract under paragraph 
                (1), the Secretary may, subject to subparagraph 
                (B), provide supplies, equipment, and services 
                for the purpose of aiding the recipient in 
                carrying out the purposes for which the award 
                is made and, for such purposes, may detail to 
                the recipient any officer or employee of the 
                Department of Health and Human Services.
                  (B) With respect to a request described in 
                subparagraph (A), the Secretary shall reduce 
                the amount of payments under the award involved 
                by an amount equal to the costs of detailing 
                personnel and the fair market value of any 
                supplies, equipment, or services provided by 
                the Secretary. The Secretary shall, for the 
                payment of expenses incurred in complying with 
                such request, expend the amounts withheld.
          (3) Application for award.--The Secretary may make an 
        award of a grant or contract under paragraph (1) only 
        if an application for the award is submitted to the 
        Secretary and the application is in such form, is made 
        in such manner, and contains such agreements, 
        assurances, and information as the Secretary determines 
        to be necessary to carry out the purposes for which the 
        award is to be made.
  (c) Biennial Report.--[Not later than February 1 of fiscal 
year 1999 and of every second such year thereafter, the 
Secretary shall submit to the Committee on Commerce of the 
House of Representatives, and the Committee on Labor and Human 
Resources of the Senate, a report that, with respect to the 
preceding 2 fiscal years--] The Secretary shall submit 
biennially 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--
          (1) contains information regarding the incidence and 
        prevalence of birth defects, developmental 
        disabilities, and the health status of individuals with 
        disabilities and the extent to which these conditions 
        have contributed to the incidence and prevalence of 
        infant mortality and affected quality of life;
          (2) contains information under paragraph (1) that is 
        specific to various racial and ethnic groups (including 
        Hispanics, non-Hispanic whites, Blacks, Native 
        Americans, and Asian Americans);
          (3) contains an assessment of the extent to which 
        various approaches of preventing birth defects, 
        developmental disabilities, and secondary health 
        conditions among individuals with disabilities have 
        been effective;
          (4) describes the activities carried out under this 
        section;
          (5) contains information on the incidence and 
        prevalence of individuals living with birth defects and 
        disabilities or developmental disabilities, information 
        on the health status of individuals with disabilities, 
        information on any health disparities experienced by 
        such individuals, and recommendations for improving the 
        health and wellness and quality of life of such 
        individuals;
          (6) contains a summary of recommendations from all 
        birth defects research conferences sponsored by the 
        Centers for Disease Control and Prevention, including 
        conferences related to spina bifida; and
          (7) contains any recommendations of the Secretary 
        regarding this section.
  (d) Applicability of Privacy Laws.--The provisions of this 
section shall be subject to the requirements of section 552a of 
title 5, United States Code. All Federal laws relating to the 
privacy of information shall apply to the data and information 
that is collected under this section.
  (e) Advisory Committee.--Notwithstanding any other provision 
of law, the members of the advisory committee appointed by the 
Director of the National Center for Environmental Health that 
have expertise in birth defects, developmental disabilities, 
and disabilities and health shall be transferred to and shall 
advise the National Center on Birth Defects and Developmental 
Disabilities effective on the date of enactment of the Birth 
Defects and Developmental Disabilities Prevention Act of 2003.
  (f) Authorization of Appropriations.--For the purpose of 
carrying out this section, there are authorized to be 
appropriated [such sums as may be necessary for each of fiscal 
years 2003 through 2007] $186,010,000 for each of fiscal years 
2022 through 2026.

           *       *       *       *       *       *       *


          effects of folic acid in prevention of birth defects

  Sec. 317J. (a) In General.--The Secretary, acting through the 
Director of the Centers for Disease Control and Prevention, 
shall expand and intensify programs (directly or through grants 
or contracts) for the following purposes:
          (1) To provide education and training for health 
        professionals and the general public for purposes of 
        explaining the effects of folic acid in preventing 
        birth defects and for purposes of encouraging each 
        woman of reproductive capacity (whether or not planning 
        a pregnancy) to consume on a daily basis a dietary 
        supplement that provides an appropriate level of folic 
        acid.
          (2) To conduct research with respect to such 
        education and training, including identifying effective 
        strategies for increasing the rate of consumption of 
        folic acid by women of reproductive capacity.
          (3) To conduct research to increase the understanding 
        of the effects of folic acid in preventing birth 
        defects, including understanding with respect to cleft 
        lip, cleft palate, and heart defects.
          (4) To provide for appropriate epidemiological 
        activities regarding folic acid and birth defects, 
        including epidemiological activities regarding neural 
        tube defects.
  (b) Consultations With States and Private Entities.--In 
carrying out subsection (a), the Secretary shall consult with 
the States and with other appropriate public or private 
entities, including national nonprofit private organizations, 
health professionals, and providers of health insurance and 
health plans.
  (c) Technical Assistance.--The Secretary may (directly or 
through grants or contracts) provide technical assistance to 
public and nonprofit private entities in carrying out the 
activities described in subsection (a).
  (d) Evaluations.--The Secretary shall (directly or through 
grants or contracts) provide for the evaluation of activities 
under subsection (a) in order to determine the extent to which 
such activities have been effective in carrying out the 
purposes of the program under such subsection, including the 
effects on various demographic populations. Methods of 
evaluation under the preceding sentence may include surveys of 
knowledge and attitudes on the consumption of folic acid and on 
blood folate levels. Such methods may include complete and 
timely monitoring of infants who are born with neural tube 
defects.
  [(e) Authorization of Appropriations.--For the purpose of 
carrying out this section, there are authorized to be 
appropriated such sums as may be necessary for each of the 
fiscal years 2001 through 2005.]

           *       *       *       *       *       *       *


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