[House Report 118-517]
[From the U.S. Government Publishing Office]


118th Congress    }                                     {       Report
                        HOUSE OF REPRESENTATIVES
 2d Session       }                                     {      118-517

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



 
          CONGENITAL HEART FUTURES REAUTHORIZATION ACT OF 2024

                                _______
                                

  May 22, 2024.--Committed to the Committee of the Whole House on the 
              State of the Union and ordered to be printed

                                _______
                                

Mrs. Rodgers of Washington, from the Committee on Energy and Commerce, 
                        submitted the following

                              R E P O R T

                        [To accompany H.R. 7189]

    The Committee on Energy and Commerce, to whom was referred 
the bill (H.R. 7189) to amend the Public Health Service Act to 
reauthorize a national congenital heart disease research, 
surveillance, and awareness program, 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
Purpose and Summary..............................................     2
Background and Need for Legislation..............................     3
Committee Action.................................................     3
Committee Votes..................................................     3
Oversight Findings and Recommendations...........................     5
New Budget Authority, Entitlement Authority, and Tax Expenditures     5
Congressional Budget Office Estimate.............................     5
Federal Mandates Statement.......................................     5
Statement of General Performance Goals and Objectives............     5
Duplication of Federal Programs..................................     5
Related Committee and Subcommittee Hearings......................     5
Committee Cost Estimate..........................................     6
Earmark, Limited Tax Benefits, and Limited Tariff Benefits.......     6
Advisory Committee Statement.....................................     6
Applicability to Legislative Branch..............................     6
Section-by-Section Analysis of the Legislation...................     6
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 ``Congenital Heart Futures 
Reauthorization Act of 2024''.

SEC. 2. REAUTHORIZATION OF NATIONAL CONGENITAL HEART DISEASE RESEARCH, 
                    SURVEILLANCE, AND AWARENESS PROGRAM.

   Section 399V-2 of the Public Health Service Act (42 U.S.C. 280g-13) 
is amended--
          (1) by redesignating subsections (f) and (g) as subsections 
        (g) and (h), respectively;
          (2) by inserting after subsection (e) the following:
  ``(f) Report and Strategy.--
          ``(1) Report.--Not later than 2 years after the date of 
        enactment of the Congenital Heart Futures Reauthorization Act 
        of 2024, the Secretary shall issue a report to the Committee on 
        Energy and Commerce of the House of Representatives and the 
        Committee on Health, Education, Labor, and Pensions of the 
        Senate including the following:
                  ``(A) A description of past and present activities of 
                the Department of Health and Human Services to increase 
                awareness and knowledge of the public with respect to 
                congenital heart disease, including efforts to address 
                the lifelong needs of congenital heart disease 
                patients.
                  ``(B) An assessment of past and present activities of 
                the Department of Health and Human Services to increase 
                education and training of health care providers with 
                respect to congenital heart disease, including efforts 
                to address the lifelong needs of congenital heart 
                disease patients.
                  ``(C) A description of the current workforce capacity 
                in the United States of health care providers who treat 
                adult patients living with congenital heart disease.
          ``(2) Strategy.--
                  ``(A) Development; submission to congress.--Not later 
                than 1 year after submitting the report required by 
                paragraph (1), the Secretary shall develop and submit 
                to Congress a strategy for improving efforts to 
                increase awareness and knowledge of the public and 
                education and training of health care providers with 
                respect to congenital heart disease. Such strategy 
                shall include findings and recommendations to--
                          ``(i) address any public awareness and 
                        research gaps and opportunities related to the 
                        lifelong needs of congenital heart disease 
                        patients, including long-term health outcomes, 
                        quality of life, mental health, and health care 
                        utilization;
                          ``(ii) address any shortages in the current 
                        workforce of health care providers who treat 
                        adult patients living with congenital heart 
                        disease, which may include strategies to 
                        enhance fellowship training programs or other 
                        continuing education programs; and
                          ``(iii) foster collaboration and 
                        dissemination of information across Federal 
                        agencies, health care providers, researchers, 
                        and patient organizations.
                  ``(B) Consultation.--In developing the strategy under 
                subparagraph (A), the Secretary shall, as appropriate, 
                consult with qualified stakeholder groups, including 
                patient organizations, health care professionals, 
                research entities, health insurance providers, 
                accrediting organizations, and relevant Federal 
                agencies, including the Centers for Disease Control and 
                Prevention, the National Institutes of Health, and the 
                Health Resources and Services Administration.''; and
          (3) in subsection (h), as so redesignated, by striking ``2020 
        through 2024'' and inserting ``2025 through 2029''.

                          Purpose and Summary

    H.R. 7189 reauthorizes the national congenital heart 
disease research, surveillance, and awareness program at the 
Centers for Disease Control and Prevention (CDC). The bill also 
requires the Secretary to issue a report and strategy for 
improvement to Congress on activities related to congenital 
heart disease for both the public and health care providers, as 
well as the current workforce capacity of health care providers 
who treat adult patients living with congenital heart disease 
(CHD). The bill reauthorizes the program for five fiscal years 
from 2025 through 2029.

                  Background and Need for Legislation

    The National Congenital Heart Disease Research, 
Surveillance, and Awareness Program supports the scientific 
understanding of congenital heart disease and the impact of 
heart defects at every stage of life through epidemiology, 
education for CHD patients and communities, and a workshop on 
research gaps and workforce. The information gained through 
this program is intended to develop lifelong, specialized care 
for patients with congenital heart defects. Heart defects are 
the most common type of birth defect, about 40,000 babies are 
born with a heart defect each year in the United States.\1\ As 
medical care and treatments have advanced, people with heart 
defects are living longer and healthier lives; currently, it is 
estimated that more than 2 million people in the United States 
are living with a heart defect.\2\
---------------------------------------------------------------------------
    \1\Centers for Disease Control and Prevention, ``Five Things To 
Know About Heart Defects'', 2021. https://www.cdc.gov/ncbddd/
heartdefects/materials/5-things-to-know.html#::text=Five%20
Things%20To%20Know%20About%20Heart%20Defects%201,defects%20need%20lifelo
ng%20
specialty%20care%20for%20their%20hearts.
    \2\Id.
---------------------------------------------------------------------------

                            Committee Action

    On February 14, 2024, the Subcommittee on Health held a 
hearing on H.R. 7189. The title of the hearing was 
``Legislative Proposals to Support Patients and Caregivers.'' 
The Subcommittee received testimony from:
           Andy Shih, PhD, Chief Science Officer, 
        Autism Speaks;
           Corey Feist, JD, MBA, Co-Founder and CEO, 
        Dr. Lorna Breen Heroes' Foundation;
           Joanne Pike, DrPH, President and CEO, 
        Alzheimer's Association;
           Gordon Tomaselli, MD, Former President, 
        American Heart Association; Marilyn and Stanley M. Katz 
        Dean, Emeritus and Professor of Medicine, Albert 
        Einstein College of Medicine; Adjunct Professor of 
        Medicine, Johns Hopkins University School of Medicine;
           Michelle Whitten, President, CEO, and Co-
        Founder, Global Down Syndrome Foundation;
           Randy Strozyk, President, American Ambulance 
        Association; and
           Christina Annunziata, MD, PhD, Senior Vice 
        President of Extramural Discovery Science, American 
        Cancer Society.
    On March 12, 2024, the Subcommittee on Health met in open 
markup session and forwarded H.R. 7189, as amended, to the full 
Committee by a record vote of 24 yeas and 0 nays.
    On March 20, 2024, the full Committee on Energy and 
Commerce met in open markup session and ordered H.R. 7189, as 
amended, favorably reported to the House by a record vote of 43 
yeas and 0 nays.

                            Committee Votes

    Clause 3(b) of rule XIII requires the Committee to list the 
record votes on the motion to report legislation and amendments 
thereto. The following reflects the record votes taken during 
the Committee consideration:


    [GRAPHIC(S) NOT AVAILABLE IN TIFF FORMAT]

                 Oversight Findings and Recommendations

    Pursuant to clause 2(b)(1) of rule X and clause 3(c)(1) of 
rule XIII, the Committee held a hearing and made findings that 
are reflected in this report.

   New Budget Authority, Entitlement Authority, and Tax Expenditures

    Pursuant to clause 3(c)(2) of rule XIII, the Committee 
finds that H.R. 7189 would result in no new or increased budget 
authority, entitlement authority, or tax expenditures or 
revenues.

                  Congressional Budget Office Estimate

    Pursuant to clause 3(c)(3) of rule XIII, at the time this 
report was filed, the cost estimate prepared by the Director of 
the Congressional Budget Office pursuant to section 402 of the 
Congressional Budget Act of 1974 was not available.

                       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.

         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 
continue to support efforts that improve scientific 
understanding and public awareness of congenital heart disease.

                    Duplication of Federal Programs

    Pursuant to clause 3(c)(5) of rule XIII, no provision of 
H.R. 7189 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.

              Related Committee and Subcommittee Hearings

    Pursuant to clause 3(c)(6) of rule XIII, the following 
related hearing was used to develop or consider H.R. 7189:
           On February 14, 2024, the Subcommittee on 
        Health held a hearing on H.R. 7189. The title of the 
        hearing was ``Legislative Proposals to Support Patients 
        and Caregivers.'' The Subcommittee received testimony 
        from:
                   Andy Shih, PhD, Chief Science 
                Officer, Autism Speaks;
                   Corey Feist, JD, MBA, Co-Founder 
                and CEO, Dr. Lorna Breen Heroes' Foundation;
                   Joanne Pike, DrPH, President and 
                CEO, Alzheimer's Association;
                   Gordon Tomaselli, MD, Former 
                President, American Heart Association; Marilyn 
                and Stanley M. Katz Dean, Emeritus and 
                Professor of Medicine, Albert Einstein College 
                of Medicine; Adjunct Professor of Medicine, 
                Johns Hopkins University School of Medicine;
                   Michelle Whitten, President, 
                CEO, and Co-Founder, Global Down Syndrome 
                Foundation;
                   Randy Strozyk, President, 
                American Ambulance Association; and
                   Christina Annunziata, MD, PhD, 
                Senior Vice President of Extramural Discovery 
                Science, American Cancer Society.

                        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. At the time this report was 
filed, the estimate was not available.

       Earmark, 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. 7189 contains no earmarks, limited 
tax benefits, or limited tariff benefits.

                      Advisory Committee Statement

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

                  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.

             Section-by-Section Analysis of the Legislation


Section 1. Short title

    Section 1 provides that the Act may be cited as the 
``Congenital Heart Futures Reauthorization Act of 2024''.

Section 2. Reauthorization of national congenital heart disease 
        research, surveillance, and awareness program

    Section 2 reauthorizes a national congenital heart disease 
program. This section also requires the Secretary of Health and 
Human Services (HHS) to issue a report to Congress within two 
years of the bill's enactment. The report must include a 
description and assessment of past and present activities at 
HHS, as well as current CHD workforce capacity needs. In the 
following year after report submission, a national strategy is 
required to be submitted to Congress detailing efforts to 
improve public awareness and train care providers on congenital 
heart disease must be submitted as well.

         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 P--ADDITIONAL PROGRAMS

           *       *       *       *       *       *       *


SEC. 399V-2. NATIONAL CONGENITAL HEART DISEASE RESEARCH, SURVEILLANCE, 
                    AND AWARENESS.

  (a) In General.--The Secretary shall, as appropriate--
          (1) enhance and expand research and data collection 
        efforts related to congenital heart disease, including 
        to study and track the epidemiology of congenital heart 
        disease to understand health outcomes for individuals 
        with congenital heart disease across all ages;
          (2) conduct activities to improve public awareness 
        of, and education related to, congenital heart disease, 
        including care of individuals with such disease; and
          (3) award grants to entities to undertake the 
        activities described in this section.
  (b) Activities.--
          (1) In general.--The Secretary shall carry out 
        activities, including, as appropriate, through a 
        national cohort study and a nationally-representative, 
        population-based surveillance system, to improve the 
        understanding of the epidemiology of congenital heart 
        disease in all age groups, with particular attention 
        to--
                  (A) the incidence and prevalence of 
                congenital heart disease in the United States;
                  (B) causation and risk factors associated 
                with, and natural history of, congenital heart 
                disease;
                  (C) health care utilization by individuals 
                with congenital heart disease;
                  (D) demographic factors associated with 
                congenital heart disease, such as age, race, 
                ethnicity, sex, and family history of 
                individuals who are diagnosed with the disease; 
                and
                  (E) evidence-based practices related to care 
                and treatment for individuals with congenital 
                heart disease.
          (2) Permissible considerations.--In carrying out the 
        activities under this section, the Secretary may, as 
        appropriate--
                  (A) collect data on the health outcomes, 
                including behavioral and mental health 
                outcomes, of a diverse population of 
                individuals of all ages with congenital heart 
                disease, such that analysis of the outcomes 
                will inform evidence-based practices for 
                individuals with congenital heart disease; and
                  (B) consider health disparities among 
                individuals with congenital heart disease, 
                which may include the consideration of prenatal 
                exposures.
  (c) Awareness Campaign.--The Secretary may carry out 
awareness and educational activities related to congenital 
heart disease in individuals of all ages, which may include 
information for patients, family members, and health care 
providers, on topics such as the prevalence of such disease, 
the effect of such disease on individuals of all ages, and the 
importance of long-term, specialized care for individuals with 
such disease.
  (d) Public Access.--The Secretary shall ensure that, subject 
to subsection (e), information collected under this section is 
made available, as appropriate, to the public, including 
researchers.
  (e) Patient Privacy.--The Secretary shall ensure that the 
data and information collected under this section are made 
available in a manner that, at a minimum, protects personal 
privacy to the extent required by applicable Federal and State 
law.
  (f) Report and Strategy.--
          (1) Report.--Not later than 2 years after the date of 
        enactment of the Congenital Heart Futures 
        Reauthorization Act of 2024, the Secretary shall issue 
        a report to the Committee on Energy and Commerce of the 
        House of Representatives and the Committee on Health, 
        Education, Labor, and Pensions of the Senate including 
        the following:
                  (A) A description of past and present 
                activities of the Department of Health and 
                Human Services to increase awareness and 
                knowledge of the public with respect to 
                congenital heart disease, including efforts to 
                address the lifelong needs of congenital heart 
                disease patients.
                  (B) An assessment of past and present 
                activities of the Department of Health and 
                Human Services to increase education and 
                training of health care providers with respect 
                to congenital heart disease, including efforts 
                to address the lifelong needs of congenital 
                heart disease patients.
                  (C) A description of the current workforce 
                capacity in the United States of health care 
                providers who treat adult patients living with 
                congenital heart disease.
          (2) Strategy.--
                  (A) Development; submission to congress.--Not 
                later than 1 year after submitting the report 
                required by paragraph (1), the Secretary shall 
                develop and submit to Congress a strategy for 
                improving efforts to increase awareness and 
                knowledge of the public and education and 
                training of health care providers with respect 
                to congenital heart disease. Such strategy 
                shall include findings and recommendations to--
                          (i) address any public awareness and 
                        research gaps and opportunities related 
                        to the lifelong needs of congenital 
                        heart disease patients, including long-
                        term health outcomes, quality of life, 
                        mental health, and health care 
                        utilization;
                          (ii) address any shortages in the 
                        current workforce of health care 
                        providers who treat adult patients 
                        living with congenital heart disease, 
                        which may include strategies to enhance 
                        fellowship training programs or other 
                        continuing education programs; and
                          (iii) foster collaboration and 
                        dissemination of information across 
                        Federal agencies, health care 
                        providers, researchers, and patient 
                        organizations.
                  (B) Consultation.--In developing the strategy 
                under subparagraph (A), the Secretary shall, as 
                appropriate, consult with qualified stakeholder 
                groups, including patient organizations, health 
                care professionals, research entities, health 
                insurance providers, accrediting organizations, 
                and relevant Federal agencies, including the 
                Centers for Disease Control and Prevention, the 
                National Institutes of Health, and the Health 
                Resources and Services Administration.
  [(f)] (g) Eligibility for Grants.--To be eligible to receive 
a grant under subsection (a)(3), an entity shall--
          (1) be a public or private nonprofit entity with 
        specialized experience in congenital heart disease; and
          (2) submit to the Secretary an application at such 
        time, in such manner, and containing such information 
        as the Secretary may require.
  [(g)] (h) Authorization of Appropriations.--To carry out this 
section, there are authorized to be appropriated $10,000,000 
for each of fiscal years [2020 through 2024] 2025 through 2029.

           *       *       *       *       *       *       *


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