Charlotte Woodward Organ Transplant Discrimination Prevention Act
Bill: H.R.1235 | Sponsor: Rep. Herrera Beutler, Jaime (R-WA)
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 anatomical gifts and 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 as follows:
            (1) The Americans with Disabilities Act, section 504 of the 
        Rehabilitation Act of 1973, and section 1557 of the Patient 
        Protection and Affordable Care Act (ACA) prohibit 
        discrimination against individuals with disabilities in organ 
        transplantation and the rationing of organs.
            (2) Despite these protections, there are findings and cases 
        that show that individuals with disabilities are being denied 
        organ transplants and related services solely based on the fact 
        that they have a disability, as is documented by the National 
        Council on Disability and others.
            (3) Sixteen States have crafted state level policy to 
        prohibit organ transplant discrimination against individuals 
        with disabilities, however, Federal action is required to 
        protect Americans with disabilities and to enforce existing law 
        regardless of the state in which they live.
            (4) Continuing cases of discrimination against individuals 
        with disabilities calls for further clarity by Congress to 
        which actions constitute discrimination within the existing 
        legal context, which entities are covered, and the remedies 
        available to individuals experiencing potential discrimination.
            (5) Licensed providers of health care services who perform 
        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 for U.S. 
        organ allocation with organs being transported across state 
        lines for transplantation procedures.
            (7) Discrimination in organ transplantation limits 
        individuals with disabilities from participating in a manner 
        that allows equal access to interstate commerce.
            (8) The existence of arbitrary discrimination against 
        individuals with disabilities in organ transplantation and 
        related services burdens the flow of organs through legal 
        channels of interstate commerce.
            (9) Congress is empowered to regulate and protect the 
        instrumentalities of interstate commerce, persons, or things in 
        interstate commerce, even though the threat may come only from 
        intrastate activities.
            (10) Congress' commerce authority includes the power to 
        regulate those activities having substantial relation to 
        interstate commerce and activities that substantially affect 
        interstate commerce.
            (11) Nothing in this bill shall be construed to limit or 
        replace the scope of obligations imposed by the Americans with 
        Disabilities Act, section 504 of the Rehabilitation Act of 
        1973, section 1557 of the Affordable Care Act, or any other 
        applicable law.

SEC. 3. DEFINITIONS.

    For purposes of this Act:
            (1) Anatomical gift.--The term ``anatomical gift'' means a 
        donation of all or part of a human body that takes effect after 
        the death of the donor for the purpose of transplantation or 
        transfusion.
            (2) 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 hearing impairments;
                    (B) qualified readers, taped texts, or other 
                effective methods of making visually delivered 
                materials available to individuals with visual 
                impairments;
                    (C) provision of information in a format that is 
                accessible for individuals with cognitive, 
                neurological, developmental, or intellectual 
                disabilities;
                    (D) provision of supported decision-making 
                services; and
                    (E) acquisition or modification of equipment or 
                devices.
            (3) 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; or
                    (B) any entity responsible for matching anatomical 
                gift donors to potential recipients.
            (4) Disability.--The term ``disability'' has the same 
        meaning give such term in section 4 of the Americans with 
        Disabilities Act of 1990.
            (5) Organ transplant.--The term ``organ transplant'' means 
        the transplantation or transfusion of a part of a human body 
        into the body of another 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 an anatomical gift.
            (7) Reasonable modifications to policies or practices.--The 
        term ``reasonable modifications to policies or practices'' 
        include--
                    (A) communication with individuals responsible for 
                supporting an individual with postsurgical and post-
                transplantation care, including medication; and
                    (B) consideration of support networks available to 
                the individual, including family, friends, and home and 
                community-based services, including home and community-
                based services funded through medicaid, medicare, 
                another health plan in which the individual is 
                enrolled, or any program or source of funding available 
                to the individual, in determining whether the 
                individual is able to comply with posttransplant 
                medical requirements.
            (8) Secretary.--The term ``Secretary'' means the Secretary 
        of Health and Human Services.
            (9) Supported decision making.--The term ``supported 
        decision making'' means the use of a support person to assist 
        an individual in making medical decisions, communicate 
        information to the individual, or ascertain an individual's 
        wishes. Such term may include--
                    (A) the inclusion of the individual's attorney-in-
                fact, health care proxy, or any person of the 
                individual's choice in communications about the 
                individual's medical care;
                    (B) permitting the individual to designate a person 
                of their choice for the purposes of supporting that 
                individual in communicating, processing information, or 
                making medical decisions;
                    (C) providing auxiliary aids and services to 
                facilitate the individual's ability to communicate and 
                process health-related information, including use of 
                assistive communication technology;
                    (D) providing information to persons designated by 
                the individual, consistent with the provisions of the 
                Health Insurance Portability and Accountability Act of 
                1996, (4 U.S.C. 13 et seq.), 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 medical 
                decisions on behalf of the individual, to ensure that 
                the individual is included in decisions involving the 
                health care of the individual and that medical 
                decisions are in accordance with the individual's own 
                expressed interests.
            (10) Support network.--The term ``support network'' means, 
        with respect to a person, one or more individuals 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, including the person's family, friends, 
        unpaid supporters, religious congregations, and community 
        centers.

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) deem such individual ineligible to receive an 
        anatomical gift or organ transplant;
            (2) deny such individual medical or related organ 
        transplantation services, including evaluation, surgery, 
        counseling, and postoperative treatment and care;
            (3) refuse to refer the individual to a transplant center 
        or other related specialist for the purpose of evaluation or 
        receipt of an organ transplant;
            (4) refuse to place an individual on an organ transplant 
        waiting list, or placement of 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 such individual for any 
        procedure associated with the receipt of an anatomical gift, 
        including post-transplantation care if such procedure would be 
        covered under such coverage for such individual if not for the 
        disability of the individual.
    (b) Exception.--
            (1) In general.--Notwithstanding subsection (a), a covered 
        entity may take an individual's disability into account when 
        making treatment or coverage recommendations or decisions, 
        solely to the extent that the physical or mental disability has 
        been found by a physician, following an individualized 
        evaluation of the potential recipient, to be medically 
        significant to the provision of the anatomical gift. The 
        previous sentence shall not be treated as requiring referrals 
        or recommendations for, or the performance of, medically 
        inappropriate organ transplants.
            (2) Clarification.--If an individual has the necessary 
        support system to provide reasonable assurance that the 
        individual will comply with posttransplant medical 
        requirements, the individual's inability to independently 
        comply with those requirements may not be deemed to be 
        medically significant for purposes of paragraph (1).
    (c) Reasonable Modifications.--A covered entity shall make 
reasonable modifications to policies, practices, or procedures of such 
entity if such modifications are necessary to make services such as 
transplantation-related counseling, information, coverage, or treatment 
available to qualified individuals with disabilities, unless the entity 
can demonstrate that making such modifications would fundamentally 
alter the nature of such services.
    (d) Clarifications.--
            (1) A covered entity shall take such steps as may be 
        necessary to ensure that no qualified individual with a 
        disability is denied services such as transplantation-related 
        counseling, information, coverage, or treatment 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 services being offered or would result in an 
        undue burden.
            (2) A covered entity shall otherwise comply with the 
        requirements of titles II and III of the Americans with 
        Disabilities Act of 1990 and the Americans with Disabilities 
        Act Amendments Act of 2008.
            (3) The provisions of this section apply to each part of 
        the organ transplant process.

SEC. 5. ENFORCEMENT.

    (a) In General.--Any individual with a claim, with respect to a 
covered entity, to be (or to have been) subject to discrimination in 
violation of section 3--
            (1) may bring such a claim 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 before the appropriate Federal court for 
        injunctive or other equitable relief, including the relief 
        described in subsection (b), against such covered entity to 
        enforce 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 or services to be made 
        available by such entity;
            (2) requiring the modification of a policy, practice, or 
        procedure of such entity; or
            (3) requiring facilities 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 Federal court 
before 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 and the Americans with Disabilities Act 
Amendments Act of 2008 or any other applicable law.
                                 <all>