Charlotte Woodward Organ Transplant Discrimination Prevention Act

Subjects: Health


<html><body><pre>[Congressional Bills 118th Congress]
[From the U.S. Government Publishing Office]
[S. 1183 Introduced in Senate (IS)]

&lt;DOC&gt;






118th CONGRESS
  1st Session
                                S. 1183

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


_______________________________________________________________________


                   IN THE SENATE OF THE UNITED STATES

                             April 18, 2023

 Mr. Rubio (for himself and Ms. Hassan) introduced the following bill; 
     which was read twice and referred to the Committee on Health, 
                     Education, Labor, and Pensions

_______________________________________________________________________

                                 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. FINDINGS.

    Congress finds the following:
            (1) The Americans with Disabilities Act of 1990, section 
        504 of the Rehabilitation Act of 1973, and section 1557 of the 
        Patient Protection and Affordable Care Act prohibit 
        discrimination against individuals with disabilities in organ 
        transplantation and the allocation of organs.
            (2) Despite those prohibitions, there are findings and 
        cases that show, as is documented by the National Council on 
        Disability and others, that individuals with disabilities are 
        being denied organ transplants and related services based 
        solely on the fact that those individuals have a disability.
            (3) 34 States have crafted State-level policy to prohibit 
        organ transplant discrimination against individuals with 
        disabilities. Federal action, however, is required to protect 
        individuals with disabilities and to enforce existing law 
        regardless of the State in which they live.
            (4) The current situation, with continuing cases of 
        discrimination against individuals with disabilities, calls for 
        further clarity by Congress about which actions constitute 
        discrimination under current law, which entities are covered, 
        and the remedies available to individuals experiencing 
        potential discrimination.
            (5) Licensed providers of health care services that provide 
        organ transplants and related services in exchange for medical 
        fees are engaging in an economic transaction with patients that 
        occurs in or substantially impacts interstate commerce.
            (6) In the national administration of organ allocation in 
        the United States, organs are transported across State lines 
        for transplantation procedures.
            (7) Discrimination in organ transplantation limits 
        individuals with disabilities from participating in health care 
        transactions in a manner that allows equal access to interstate 
        commerce.
            (8) The existence of discrimination against individuals 
        with disabilities in the provision of organ transplantation and 
        related services burdens the flow of organs through legal 
        channels of interstate commerce.

SEC. 3. DEFINITIONS.

    In this Act:
            (1) Auxiliary aids and services.--The term ``auxiliary aids 
        and services'' includes--
                    (A) qualified interpreters or other effective 
                methods of making aurally delivered materials available 
                to individuals with a hearing impairment;
                    (B) qualified readers, taped texts, or other 
                effective methods of making visually delivered 
                materials available to individuals with a visual 
                impairment;
                    (C) information in a format that is accessible for 
                individuals with a cognitive, neurological, 
                developmental, or intellectual disability;
                    (D) supported decision-making services; and
                    (E) acquisition or modification of equipment or 
                devices.
            (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) Matching entity.--The term ``matching entity'' means an 
        entity described in section 4.
            (6) 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.
            (7) 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.
            (8) 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; and
                    (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.
            (9) 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.
            (10) Secretary.--The term ``Secretary'' means the Secretary 
        of Health and Human Services.
            (11) 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 described 
                in subparagraph (A), (B), (C), or (E) of paragraph (1) 
                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.
            (12) 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. 4. PROHIBITION OF DISCRIMINATORY POLICY.

    An entity who receives a contract under section 372 of the Public 
Health Service Act (42 U.S.C. 274) to match human organs and 
individuals, and otherwise carry out the functions described in 
subsection (b) of that section, 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. 5. 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--
                    (A) may bring a claim regarding the allegation to 
                the Office for Civil Rights of the Department of Health 
                and Human Services, for expedited resolution; and
                    (B) whether or not such a claim is brought under 
                subparagraph (A) or a violation is found pursuant to 
                subparagraph (A), may bring a civil action in a 
                district court of the United States for injunctive or 
                other equitable relief, including the relief described 
                in paragraph (2), against such covered entity to obtain 
                compliance of such covered entity with this section.
            (2) Relief available.--The injunctive and equitable relief 
        available in a civil action brought under paragraph (1)(B), 
        with respect to a covered entity, includes--
                    (A) requiring auxiliary aids and services to be 
                made available by the entity involved;
                    (B) requiring reasonable modifications to policies 
                or practices (including procedures) of such entity; or
                    (C) requiring that a facility of such entity be 
                made readily accessible and usable.
            (3) Expedited review.--In the case of a civil action 
        brought under paragraph (1)(B), with respect to a covered 
        entity, the district court in which such action is brought 
        shall advance on its docket and expedite review and disposition 
        of such action.
            (4) 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. 6. 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. 7. 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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