Charlotte Woodward Organ Transplant Discrimination Prevention Act

Charlotte Woodward Organ Transplant Discrimination Prevention Act

This bill expressly prohibits health care providers and other entities involved in matching donated organs with recipients from denying or restricting an individual's access to organ transplants solely on the basis of the individual's disability, except in limited circumstances.

Specifically, these entities may consider an individual's disability when making decisions about transplants only if a physician finds, based on an individualized evaluation, that the individual's physical or mental disability is medically significant to the provision of the transplant. A disability shall not be considered medically significant if the individual has an adequate support system in place to comply with transplant-related medical requirements.

These entities must also make reasonable changes to their policies to make transplants and related care more available to individuals with disabilities.

Aggrieved individuals may bring claims of discrimination to the Office of Civil Rights of the Department of Health and Human Services. The bill provides for expedited resolutions of these claims.

In addition, the board of directors of the Organ Procurement and Transplantation Network may not issue policies that prohibit or hinder access to an organ transplant based solely on the individual's disability. This network is a public-private partnership linking professionals involved in the U.S. organ donation and transplantation system. 

[Congressional Bills 119th Congress]
[From the U.S. Government Publishing Office]
[H.R. 1520 Introduced in House (IH)]

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119th CONGRESS
  1st Session
                                H. R. 1520

     To prohibit discrimination on the basis of mental or physical 
               disability in cases of organ transplants.


_______________________________________________________________________


                    IN THE HOUSE OF REPRESENTATIVES

                           February 24, 2025

   Mrs. Cammack (for herself, Mrs. Dingell, Mr. Issa, Ms. Wasserman 
  Schultz, and Mr. Sessions) introduced the following bill; which was 
            referred to the Committee on Energy and Commerce

_______________________________________________________________________

                                 A BILL


 
     To prohibit discrimination on the basis of mental or physical 
               disability in cases of organ transplants.

    Be it enacted by the Senate and House of Representatives of the 
United States of America in Congress assembled,

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, 1 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.
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