Charlotte Woodward Organ Transplant Discrimination Prevention Act
Bill: S.3301 | Sponsor: Sen. Rubio, Marco (R-FL)
Policy area: Health

Summary:
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 or before a federal court. The bill provides for expedited resolutions of these claims.

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) More than 25 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) There are 11 geographic regions that are used in the 
        national administration of organ allocation in the United 
        States, with organs being 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 decisionmaking services; and
                    (E) acquisition or modification of equipment or 
                devices.
            (2) Covered entity.--The term ``covered entity'' means--
                    (A) 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, that--
                            (i) is in interstate commerce; or
                            (ii) 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; or
                    (B) any transplant center or entity responsible for 
                matching human organ donors to potential recipients 
                that is in interstate commerce, or that provides the 
                matching services in a manner described in subparagraph 
                (A)(ii).
            (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 or 
        curing 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 individuals responsible for 
                supporting an individual with postsurgical or other 
                care following an organ transplant or related services, 
                including support with medication; and
                    (B) consideration, in determining whether an 
                individual will be able to comply with health 
                requirements following an organ transplant or receipt 
                of related services, of support networks available to 
                the 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 individual is enrolled, or any 
                program or source of funding available to the 
                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) Secretary.--The term ``Secretary'' means the Secretary 
        of Health and Human Services.
            (10) Supported decisionmaking.--The term ``supported 
        decisionmaking'' means the use of a support person to assist an 
        individual in making health care decisions, communicate 
        information to the individual, or ascertain an 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 individual 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.
            (11) Support network.--The term ``support network'' means, 
        with respect to a person, one or more individuals who are--
                    (A) selected by the person or by the person and the 
                guardian of the person, to provide assistance to that 
                person or guidance to that person 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 person.

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 mental or physical 
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;
            (4) refuse to place the individual on an organ transplant 
        waiting list, or place the individual at a lower-priority 
        position on the list than the position at which the individual 
        would have been placed if not for the disability of the 
        individual; or
            (5) decline insurance coverage for the individual for any 
        procedure associated with the receipt of an organ transplant or 
        for related services, which procedure or services, 
        respectively, would be covered under such insurance for such 
        individual if not for the disability of the individual.
    (b) Exception.--
            (1) In general.--
                    (A) Medically significant disabilities.--
                Notwithstanding subsection (a), a covered entity may 
                take a qualified individual's physical or mental 
                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 individual will be able to comply with health 
        requirements following an organ transplant or receipt of 
        related services, as the case may be, the 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.--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, and 
        insurance coverage for the individual is not declined for a 
        procedure or services described in section 4(a)(5), because of 
        the absence of auxiliary aids and services, unless the entity 
        can demonstrate that taking such steps would fundamentally 
        alter the nature of the procedure or services being offered or 
        would result in an undue burden on the entity.
            (2) Compliance with other law.--Nothing in this Act 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.
            (3) Application to each part of process.--The provisions of 
        this section apply to each part of the organ transplant process 
        and the process for receipt of related services.

SEC. 5. ENFORCEMENT.

    (a) In General.--Any individual who alleges that a qualified 
individual was subject to a violation of section 4 by a covered 
entity--
            (1) 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
            (2) whether or not such a claim is brought under paragraph 
        (1) or a violation is found pursuant to paragraph (1), may 
        bring a civil action in a district court of the United States 
        for injunctive or other equitable relief, including the relief 
        described in subsection (b), against such covered entity to 
        obtain compliance of such covered entity with such section.
    (b) Relief Available.--The injunctive and equitable relief 
available in a civil action brought under subsection (a)(2), with 
respect to a covered entity, includes--
            (1) requiring auxiliary aids and services to be made 
        available by such entity;
            (2) requiring reasonable modifications to policies or 
        practices (including procedures) of such entity; or
            (3) requiring that a facility of such entity be made 
        readily accessible and usable.
    (c) Expedited Review.--In the case of a civil action brought under 
subsection (a)(2), 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.
    (d) Rule of Construction.--Nothing in this section is intended to 
limit or replace available remedies under the Americans with 
Disabilities Act of 1990 or any other applicable law.

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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