[House Report 118-507]
[From the U.S. Government Publishing Office]


118th Congress }                                          { Report 
                        HOUSE OF REPRESENTATIVES
  2d Session   }                                          { 118-507

======================================================================
 
   CHARLOTTE WOODWARD ORGAN TRANSPLANT DISCRIMINATION PREVENTION ACT

                                _______
                                

  May 14, 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. 2706]

    The Committee on Energy and Commerce, to whom was referred 
the bill (H.R. 2706) to prohibit discrimination on the basis of 
mental or physical disability in cases of organ transplants, 
having considered the same, reports favorably thereon with an 
amendment and recommends that the bill as amended do pass.

                                CONTENTS

                                                                   Page
Purpose and Summary..............................................     4
Background and Need for Legislation..............................     4
Committee Action.................................................     5
Committee Votes..................................................     5
Oversight Findings and Recommendations...........................     7
New Budget Authority, Entitlement Authority, and Tax Expenditures     7
Congressional Budget Office Estimate.............................     7
Federal Mandates Statement.......................................     7
Statement of General Performance Goals and Objectives............     7
Duplication of Federal Programs..................................     7
Related Committee and Subcommittee Hearings......................     7
Committee Cost Estimate..........................................     8
Earmark, Limited Tax Benefits, and Limited Tariff Benefits.......     8
Advisory Committee Statement.....................................     8
Applicability to Legislative Branch..............................     8
Section-by-Section Analysis of the Legislation...................     8
Changes in Existing Law Made by the Bill, as Reported............     9

    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 ``Charlotte Woodward Organ Transplant 
Discrimination Prevention Act''.

SEC. 2. DEFINITIONS.

  In this Act:
          (1) Auxiliary aids and services.--The term ``auxiliary aids 
        and services'' has the meaning given the term in section 4 of 
        the Americans with Disabilities Act of 1990 (42 U.S.C. 12103).
          (2) Covered entity.--The term ``covered entity'' means any 
        licensed provider of health care services (including licensed 
        health care practitioners, hospitals, nursing facilities, 
        laboratories, intermediate care facilities, psychiatric 
        residential treatment facilities, institutions for individuals 
        with intellectual or developmental disabilities, and prison 
        health centers), and any transplant hospital (as defined in 
        section 121.2 of title 42, Code of Federal Regulations or a 
        successor regulation), that--
                  (A) is in interstate commerce; or
                  (B) provides health care services in a manner that--
                          (i) substantially affects or has a 
                        substantial relation to interstate commerce; or
                          (ii) includes use of an instrument (including 
                        an instrument of transportation or 
                        communication) of interstate commerce.
          (3) Disability.--The term ``disability'' has the meaning 
        given the term in section 3 of the Americans with Disabilities 
        Act of 1990 (42 U.S.C. 12102).
          (4) Human organ.--The term ``human organ'' has the meaning 
        given the term in section 301(c) of the National Organ 
        Transplant Act (42 U.S.C. 274e(c)).
          (5) Organ transplant.--The term ``organ transplant'' means 
        the transplantation or transfusion of a donated human organ 
        into the body of another human for the purpose of treating a 
        medical condition.
          (6) Qualified individual.--The term ``qualified individual'' 
        means an individual who, with or without a support network, 
        provision of auxiliary aids and services, or reasonable 
        modifications to policies or practices, meets eligibility 
        requirements for the receipt of a human organ.
          (7) Reasonable modifications to policies or practices.--The 
        term ``reasonable modifications to policies or practices'' 
        includes--
                  (A) communication with persons responsible for 
                supporting a qualified individual with postsurgical or 
                other care following an organ transplant or related 
                services, including support with medication;
                  (B) consideration, in determining whether a qualified 
                individual will be able to comply with health 
                requirements following an organ transplant or receipt 
                of related services, of support networks available to 
                the qualified individual, including family, friends, 
                and providers of home and community-based services, 
                including home and community-based services funded 
                through the Medicare or Medicaid program under title 
                XVIII or XIX, respectively, of the Social Security Act 
                (42 U.S.C. 1395 et seq., 1396 et seq.), another health 
                plan in which the qualified individual is enrolled, or 
                any program or source of funding available to the 
                qualified individual; and
                  (C) the use of supported decision-making, when 
                needed, by a qualified individual.
          (8) Related services.--The term ``related services'' means 
        services related to an organ transplant that consist of--
                  (A) evaluation;
                  (B) counseling;
                  (C) treatment, including postoperative treatment, and 
                care;
                  (D) provision of information; and
                  (E) any other service recommended or required by a 
                physician.
          (9) Supported decision-making.--The term ``supported 
        decision-making'' means the use of a support person to assist a 
        qualified individual in making health care decisions, 
        communicate information to the qualified individual, or 
        ascertain a qualified individual's wishes. Such term includes--
                  (A) the inclusion of the individual's attorney-in-
                fact or health care proxy, or any person of the 
                individual's choice, in communications about the 
                individual's health care;
                  (B) permitting the individual to designate a person 
                of the individual's choice for the purposes of 
                supporting that individual in communicating, processing 
                information, or making health care decisions;
                  (C) providing auxiliary aids and services to 
                facilitate the individual's ability to communicate and 
                process health-related information, including providing 
                use of assistive communication technology;
                  (D) providing health information to persons 
                designated by the individual, consistent with the 
                regulations promulgated under section 264(c) of the 
                Health Insurance Portability and Accountability Act of 
                1996 (42 U.S.C. 1320d-2 note) and other applicable laws 
                and regulations governing disclosure of health 
                information;
                  (E) providing health information in a format that is 
                readily understandable by the individual; and
                  (F) working with a court-appointed guardian or other 
                person responsible for making health care decisions on 
                behalf of the individual, to ensure that the individual 
                is included in decisions involving the health care of 
                the individual and that health care decisions are in 
                accordance with the individual's own expressed 
                interests.
          (10) Support network.--The term ``support network'' means, 
        with respect to a qualified individual, one or more people who 
        are--
                  (A) selected by the qualified individual or by the 
                qualified individual and the guardian of the qualified 
                individual, to provide assistance to the qualified 
                individual or guidance to that qualified individual in 
                understanding issues, making plans for the future, or 
                making complex decisions; and
                  (B) who may include the family members, friends, 
                unpaid supporters, members of the religious 
                congregation, and appropriate personnel at a community 
                center, of or serving the qualified individual.

SEC. 3. PROHIBITION OF DISCRIMINATORY POLICY.

  The board of directors described in section 372(b)(1)(B) of the 
Public Health Service Act (42 U.S.C. 274(b)(1)(B)) shall not issue 
policies, recommendations, or other memoranda that would prohibit, or 
otherwise hinder, a qualified individual's access to an organ 
transplant solely on the basis of that individual's disability.

SEC. 4. PROHIBITION OF DISCRIMINATION.

  (a) In General.--Subject to subsection (b), a covered entity may not, 
solely on the basis of a qualified individual's disability--
          (1) determine that the individual is ineligible to receive an 
        organ transplant or related services;
          (2) deny the individual an organ transplant or related 
        services;
          (3) refuse to refer the individual to an organ transplant 
        center or other related specialist for the purpose of receipt 
        of an organ transplant or other related services; or
          (4) refuse to place the individual on an organ transplant 
        waiting list.
  (b) Exception.--
          (1) In general.--
                  (A) Medically significant disabilities.--
                Notwithstanding subsection (a), a covered entity may 
                take a qualified individual's disability into account 
                when making a health care treatment or coverage 
                recommendation or decision, solely to the extent that 
                the disability has been found by a physician, following 
                an individualized evaluation of the potential 
                recipient, to be medically significant to the receipt 
                of the organ transplant or related services, as the 
                case may be.
                  (B) Construction.--Subparagraph (A) shall not be 
                construed to require a referral or recommendation for, 
                or the performance of, a medically inappropriate organ 
                transplant or medically inappropriate related services.
          (2) Clarification.--If a qualified individual has the 
        necessary support network to provide a reasonable assurance 
        that the qualified individual will be able to comply with 
        health requirements following an organ transplant or receipt of 
        related services, as the case may be, the qualified 
        individual's inability to independently comply with those 
        requirements may not be construed to be medically significant 
        for purposes of paragraph (1).
  (c) Reasonable Modifications.--A covered entity shall make reasonable 
modifications to policies or practices (including procedures) of such 
entity if such modifications are necessary to make an organ transplant 
or related services available to qualified individuals with 
disabilities, unless the entity can demonstrate that making such 
modifications would fundamentally alter the nature of such policies or 
practices.
  (d) Clarifications.--
          (1) No denial of services because of absence of auxiliary 
        aids and services.--For purposes of this section, a covered 
        entity shall take such steps as may be necessary to ensure that 
        a qualified individual with a disability is not denied a 
        procedure associated with the receipt of an organ transplant or 
        related services, because of the absence of auxiliary aids and 
        services, unless the covered entity can demonstrate that taking 
        such steps would fundamentally alter the nature of the 
        procedure being offered or would result in an undue burden on 
        the entity.
          (2) Compliance with other law.--Nothing in this section shall 
        be construed--
                  (A) to prevent a covered entity from providing organ 
                transplants or related services at a level that is 
                greater than the level that is required by this 
                section; or
                  (B) to limit the rights of an individual with a 
                disability under, or to replace or limit the scope of 
                obligations imposed by, the Americans with Disabilities 
                Act of 1990 (42 U.S.C. 12101 et seq.) including the 
                provisions added to such Act by the ADA Amendments Act 
                of 2008, section 504 of the Rehabilitation Act of 1973 
                (29 U.S.C. 794), section 1557 of the Patient Protection 
                and Affordable Care Act (42 U.S.C. 18116), or any other 
                applicable law.
  (e) Enforcement.--
          (1) In general.--Any individual who alleges that a qualified 
        individual was subject to a violation of this section by a 
        covered entity may bring a claim regarding the allegation to 
        the Office for Civil Rights of the Department of Health and 
        Human Services, for expedited resolution, as appropriate.
          (2) Rule of construction.--Nothing in this subsection is 
        intended to limit or replace available remedies under the 
        Americans with Disabilities Act of 1990 (42 U.S.C. 12101 et 
        seq.) or any other applicable law.

SEC. 5. APPLICATION TO EACH PART OF PROCESS.

  The provisions of this Act--
          (1) that apply to an organ transplant, also apply to the 
        evaluation and listing of a qualified individual, and to the 
        organ transplant and post-organ-transplant treatment of such an 
        individual; and
          (2) that apply to related services, also apply to the process 
        for receipt of related services by such an individual.

SEC. 6. EFFECT ON OTHER LAWS.

  Nothing in this Act shall be construed to supersede any provision of 
any State or local law that provides greater rights to qualified 
individuals with respect to organ transplants than the rights 
established under this Act.

                          PURPOSE AND SUMMARY

    H.R. 2706 prohibits health care providers and other 
entities from denying or restricting an individual's access to 
organ transplants solely on the basis of the individual's 
disability, except in limited circumstances.

                  BACKGROUND AND NEED FOR LEGISLATION

    According to the National Council on Disability, 
individuals with disabilities are often denied equal access to 
organ transplants based solely on disability status. The 
denials are usually based on assumptions that these 
individuals' lives are of poorer quality than individuals 
without disabilities and on misinterpretations regarding the 
ability of these individuals to comply with postoperative 
care.\1\ Existing federal laws, the Americans with Disabilities 
Act of 1990, the Rehabilitation Act of 1973, and the Patient 
Protection and Affordable Care Act, prohibit organ transplant 
centers from discriminating on the basis of 
disability.2}3}4 However, there is limited 
enforcement and a lack of federal guidance to ensure patients 
are protected. Some states have laws banning organ transplant 
discrimination, but the state patchwork can lead to further 
confusion, and disability-based discrimination in the organ 
transplant system continues to occur. For instance, an infant 
with down syndrome in Florida needed a heart transplant due to 
a congenital heart defect. The infant was denied a heart 
transplant by three physicians and tragically passed away.\5\ 
H.R. 2706 will clarify that individuals with disabilities shall 
not be denied an organ transplant or related services, based 
solely on the individual's disability and includes an expedited 
review and enforcement mechanism through the Department of 
Health and Humans Services Office of Civil Rights.
---------------------------------------------------------------------------
    \1\National Council on Disability, Organ Transplant Discrimination 
Against People with Disabilities, Part of the Bioethics and Disability 
Series, September 25, 2019.
    \2\ Public Law 101-336, Americans with Disabilities Act of 1990.
    \3\Public Law 93-112, Rehabilitation Act of 1973.
    \4\Public Law 111-148, Patient Protection and Affordable Care Act.
    \5\WCJB, Ocala couple inspires NCFL Congresswoman to push forward 
bill for those with disabilities.
---------------------------------------------------------------------------

                            COMMITTEE ACTION

    On February 14, 2024, the Subcommittee on Health held a 
hearing on H.R. 2706. 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. 2706, as amended, to the full 
Committee by voice vote.
    On March 20, 2024, the full Committee on Energy and 
Commerce met in open markup session and ordered H.R. 2706, as 
amended, favorably reported to the House by a record vote of 46 
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:


                 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. 2706 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 
prohibit health care practices that discriminate against 
individuals with a disability during the organ transplant 
process.

                    DUPLICATION OF FEDERAL PROGRAMS

    Pursuant to clause 3(c)(5) of rule XIII, no provision of 
H.R. 2706 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. 2706:
           On February 14, 2024, the Subcommittee on 
        Health held a hearing on H.R. 2706. 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. 2706 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 
``Charlotte Woodward Organ Transplant Discrimination Prevention 
Act''.

Section 2. Definitions

    Section 2 provides definitions for various terms used 
throughout the bill text.

Section 3. Prohibition of discriminatory policy

    Section 3 prohibits the Board of Directors of the Organ 
Procurement and Transplantation Network from issuing policies 
that would prohibit a qualified individual from accessing an 
organ transplant solely on the basis of that individual's 
disability.

Section 4. Prohibition of discrimination

    Section 4 prohibits a covered entity from determining an 
individual is ineligible to receive an organ transplant, 
denying an individual an organ, refusing to refer an individual 
to a transplant center, or refusing to place the individual on 
the transplant waitlist based solely on the individual's 
disability, except in certain circumstances. It also requires 
the Office of Civil Rights within the Department of Health and 
Human Services to expedite claims allowed under this Act, 
providing for stronger enforcement.

Section 5. Application to each part of process

    Section 5 clarifies that certain provisions of this Act 
also apply to the evaluation and listing of qualified 
individuals, post-organ-transplant treatment of such an 
individual, and the process of receipt of related services.

Section 6. Effect on other laws

    Section 6 clarifies that nothing in this Act shall be 
construed to supersede any provision of State or local law that 
provides further protections to individuals with disabilities.

         CHANGES IN EXISTING LAW MADE BY THE BILL, AS REPORTED

    This legislation does not amend any existing Federal 
statute.

                                  [all]