I 116th CONGRESS 2d Session H. R. 8981 IN THE HOUSE OF REPRESENTATIVES December 16, 2020 Ms. Herrera Beutler (for herself and Ms. Porter ) 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 anatomical gifts and organ transplants.

1. Short title This Act may be cited as the Charlotte Woodward Organ Transplant Discrimination Prevention Act . 2. 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 given 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. 3. 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. 4. 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.