S1183-118

1. Short title This Act may be cited as the Charlotte Woodward Organ Transplant Discrimination Prevention Act.

2. Findings Congress finds the following: 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. 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. 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. 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. 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. In the national administration of organ allocation in the United States, organs are transported across State lines for transplantation procedures. Discrimination in organ transplantation limits individuals with disabilities from participating in health care transactions in a manner that allows equal access to interstate commerce. 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.

3. Definitions In this Act: The term auxiliary aids and services includes— qualified interpreters or other effective methods of making aurally delivered materials available to individuals with a hearing impairment; qualified readers, taped texts, or other effective methods of making visually delivered materials available to individuals with a visual impairment; information in a format that is accessible for individuals with a cognitive, neurological, developmental, or intellectual disability; supported decision-making services; and acquisition or modification of equipment or devices. 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— is in interstate commerce; or provides health care services in a manner that— substantially affects or has a substantial relation to interstate commerce; or includes use of an instrument (including an instrument of transportation or communication) of interstate commerce. 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). 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)). The term matching entity means an entity described in section 4. 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. 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. The term reasonable modifications to policies or practices includes— 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 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. The term related services means services related to an organ transplant that consist of— evaluation; counseling; treatment, including postoperative treatment, and care; provision of information; and any other service recommended or required by a physician. The term Secretary means the Secretary of Health and Human Services. 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— 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; 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; 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; 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; providing health information in a format that is readily understandable by the individual; and 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. The term support network means, with respect to a qualified individual, one or more people who are— 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 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.

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.

5. Prohibition of discrimination Subject to subsection (b), a covered entity may not, solely on the basis of a qualified individual’s disability— determine that the individual is ineligible to receive an organ transplant or related services; deny the individual an organ transplant or related services; 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 refuse to place the individual on an organ transplant waiting list. 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. 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. 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). 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. 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. Nothing in this section shall be construed— 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 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. 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; and 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. The injunctive and equitable relief available in a civil action brought under paragraph (1)(B), with respect to a covered entity, includes— requiring auxiliary aids and services to be made available by the entity involved; requiring reasonable modifications to policies or practices (including procedures) of such entity; or requiring that a facility of such entity be made readily accessible and usable. 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. 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.

6. Application to each part of process The provisions of this Act— 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 that apply to related services, also apply to the process for receipt of related services by such an individual.

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.