Charlotte Woodward Organ Transplant Discrimination Prevention Act

II 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 Representa- 1 tives of the United States of America in Congress assembled, 2 SECTION 1. SHORT TITLE. 3 This Act may be cited as the ‘‘Charlotte Woodward 4 Organ Transplant Discrimination Prevention Act’’. 5 SEC. 2. FINDINGS. 6 Congress finds the following: 7 (1) The Americans with Disabilities Act of 8 1990, section 504 of the Rehabilitation Act of 1973, 9 and section 1557 of the Patient Protection and Af- 10 VerDate Sep 11 2014 22:36 Apr 20, 2023 Jkt 039200 PO 00000 Frm 00001 Fmt 6652 Sfmt 6201 E:\BILLS\S1183.IS S1183 kjohnson on DSK79L0C42PROD with BILLS 2 •S 1183 IS fordable Care Act prohibit discrimination against in- 1 dividuals with disabilities in organ transplantation 2 and the allocation of organs. 3 (2) Despite those prohibitions, there are find- 4 ings and cases that show, as is documented by the 5 National Council on Disability and others, that indi- 6 viduals with disabilities are being denied organ 7 transplants and related services based solely on the 8 fact that those individuals have a disability. 9 (3) 34 States have crafted State-level policy to 10 prohibit organ transplant discrimination against in- 11 dividuals with disabilities. Federal action, however, 12 is required to protect individuals with disabilities 13 and to enforce existing law regardless of the State 14 in which they live. 15 (4) The current situation, with continuing cases 16 of discrimination against individuals with disabil- 17 ities, calls for further clarity by Congress about 18 which actions constitute discrimination under cur- 19 rent law, which entities are covered, and the rem- 20 edies available to individuals experiencing potential 21 discrimination. 22 (5) Licensed providers of health care services 23 that provide organ transplants and related services 24 in exchange for medical fees are engaging in an eco- 25 VerDate Sep 11 2014 22:36 Apr 20, 2023 Jkt 039200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6201 E:\BILLS\S1183.IS S1183 kjohnson on DSK79L0C42PROD with BILLS 3 •S 1183 IS nomic transaction with patients that occurs in or 1 substantially impacts interstate commerce. 2 (6) In the national administration of organ allo- 3 cation in the United States, organs are transported 4 across State lines for transplantation procedures. 5 (7) Discrimination in organ transplantation 6 limits individuals with disabilities from participating 7 in health care transactions in a manner that allows 8 equal access to interstate commerce. 9 (8) The existence of discrimination against indi- 10 viduals with disabilities in the provision of organ 11 transplantation and related services burdens the flow 12 of organs through legal channels of interstate com- 13 merce. 14 SEC. 3. DEFINITIONS. 15 In this Act: 16 (1) AUXILIARY AIDS AND SERVICES.—The term 17 ‘‘auxiliary aids and services’’ includes— 18 (A) qualified interpreters or other effective 19 methods of making aurally delivered materials 20 available to individuals with a hearing impair- 21 ment; 22 (B) qualified readers, taped texts, or other 23 effective methods of making visually delivered 24 VerDate Sep 11 2014 22:36 Apr 20, 2023 Jkt 039200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\S1183.IS S1183 kjohnson on DSK79L0C42PROD with BILLS 4 •S 1183 IS materials available to individuals with a visual 1 impairment; 2 (C) information in a format that is acces- 3 sible for individuals with a cognitive, neuro- 4 logical, developmental, or intellectual disability; 5 (D) supported decision-making services; 6 and 7 (E) acquisition or modification of equip- 8 ment or devices. 9 (2) COVERED ENTITY.—The term ‘‘covered en- 10 tity’’ means any licensed provider of health care 11 services (including licensed health care practitioners, 12 hospitals, nursing facilities, laboratories, inter- 13 mediate care facilities, psychiatric residential treat- 14 ment facilities, institutions for individuals with intel- 15 lectual or developmental disabilities, and prison 16 health centers), and any transplant hospital (as de- 17 fined in section 121.2 of title 42, Code of Federal 18 Regulations or a successor regulation), that— 19 (A) is in interstate commerce; or 20 (B) provides health care services in a man- 21 ner that— 22 (i) substantially affects or has a sub- 23 stantial relation to interstate commerce; or 24 VerDate Sep 11 2014 01:11 Apr 21, 2023 Jkt 039200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6201 E:\BILLS\S1183.IS S1183 kjohnson on DSK79L0C42PROD with BILLS 5 •S 1183 IS (ii) includes use of an instrument (in- 1 cluding an instrument of transportation or 2 communication) of interstate commerce. 3 (3) DISABILITY.—The term ‘‘disability’’ has the 4 meaning given the term in section 3 of the Ameri- 5 cans with Disabilities Act of 1990 (42 U.S.C. 6 12102). 7 (4) HUMAN ORGAN.—The term ‘‘human organ’’ 8 has the meaning given the term in section 301(c) of 9 the National Organ Transplant Act (42 U.S.C. 10 274e(c)). 11 (5) MATCHING ENTITY.—The term ‘‘matching 12 entity’’ means an entity described in section 4. 13 (6) ORGAN TRANSPLANT.—The term ‘‘organ 14 transplant’’ means the transplantation or trans- 15 fusion of a donated human organ into the body of 16 another human for the purpose of treating a medical 17 condition. 18 (7) QUALIFIED INDIVIDUAL.—The term ‘‘quali- 19 fied individual’’ means an individual who, with or 20 without a support network, provision of auxiliary 21 aids and services, or reasonable modifications to 22 policies or practices, meets eligibility requirements 23 for the receipt of a human organ. 24 VerDate Sep 11 2014 22:36 Apr 20, 2023 Jkt 039200 PO 00000 Frm 00005 Fmt 6652 Sfmt 6201 E:\BILLS\S1183.IS S1183 kjohnson on DSK79L0C42PROD with BILLS 6 •S 1183 IS (8) REASONABLE MODIFICATIONS TO POLICIES 1 OR PRACTICES.—The term ‘‘reasonable modifications 2 to policies or practices’’ includes— 3 (A) communication with persons respon- 4 sible for supporting a qualified individual with 5 postsurgical or other care following an organ 6 transplant or related services, including support 7 with medication; and 8 (B) consideration, in determining whether 9 a qualified individual will be able to comply 10 with health requirements following an organ 11 transplant or receipt of related services, of sup- 12 port networks available to the qualified indi- 13 vidual, including family, friends, and providers 14 of home and community-based services, includ- 15 ing home and community-based services funded 16 through the Medicare or Medicaid program 17 under title XVIII or XIX, respectively, of the 18 Social Security Act (42 U.S.C. 1395 et seq., 19 1396 et seq.), another health plan in which the 20 qualified individual is enrolled, or any program 21 or source of funding available to the qualified 22 individual. 23 VerDate Sep 11 2014 22:36 Apr 20, 2023 Jkt 039200 PO 00000 Frm 00006 Fmt 6652 Sfmt 6201 E:\BILLS\S1183.IS S1183 kjohnson on DSK79L0C42PROD with BILLS 7 •S 1183 IS (9) RELATED SERVICES.—The term ‘‘related 1 services’’ means services related to an organ trans- 2 plant that consist of— 3 (A) evaluation; 4 (B) counseling; 5 (C) treatment, including postoperative 6 treatment, and care; 7 (D) provision of information; and 8 (E) any other service recommended or re- 9 quired by a physician. 10 (10) SECRETARY.—The term ‘‘Secretary’’ 11 means the Secretary of Health and Human Services. 12 (11) SUPPORTED DECISION MAKING.—The term 13 ‘‘supported decision making’’ means the use of a 14 support person to assist a qualified individual in 15 making health care decisions, communicate informa- 16 tion to the qualified individual, or ascertain a quali- 17 fied individual’s wishes. Such term includes— 18 (A) the inclusion of the individual’s attor- 19 ney-in-fact or health care proxy, or any person 20 of the individual’s choice, in communications 21 about the individual’s health care; 22 (B) permitting the individual to designate 23 a person of the individual’s choice for the pur- 24 poses of supporting that individual in commu- 25 VerDate Sep 11 2014 22:36 Apr 20, 2023 Jkt 039200 PO 00000 Frm 00007 Fmt 6652 Sfmt 6201 E:\BILLS\S1183.IS S1183 kjohnson on DSK79L0C42PROD with BILLS 8 •S 1183 IS nicating, processing information, or making 1 health care decisions; 2 (C) providing auxiliary aids and services 3 described in subparagraph (A), (B), (C), or (E) 4 of paragraph (1) to facilitate the individual’s 5 ability to communicate and process health-re- 6 lated information, including providing use of as- 7 sistive communication technology; 8 (D) providing health information to per- 9 sons designated by the individual, consistent 10 with the regulations promulgated under section 11 264(c) of the Health Insurance Portability and 12 Accountability Act of 1996 (42 U.S.C. 1320d– 13 2 note) and other applicable laws and regula- 14 tions governing disclosure of health informa- 15 tion; 16 (E) providing health information in a for- 17 mat that is readily understandable by the indi- 18 vidual; and 19 (F) working with a court-appointed guard- 20 ian or other person responsible for making 21 health care decisions on behalf of the individual, 22 to ensure that the individual is included in deci- 23 sions involving the health care of the individual 24 VerDate Sep 11 2014 22:36 Apr 20, 2023 Jkt 039200 PO 00000 Frm 00008 Fmt 6652 Sfmt 6201 E:\BILLS\S1183.IS S1183 kjohnson on DSK79L0C42PROD with BILLS 9 •S 1183 IS and that health care decisions are in accordance 1 with the individual’s own expressed interests. 2 (12) SUPPORT NETWORK.—The term ‘‘support 3 network’’ means, with respect to a qualified indi- 4 vidual, one or more people who are— 5 (A) selected by the qualified individual or 6 by the qualified individual and the guardian of 7 the qualified individual, to provide assistance to 8 the qualified individual or guidance to that 9 qualified individual in understanding issues, 10 making plans for the future, or making complex 11 decisions; and 12 (B) who may include the family members, 13 friends, unpaid supporters, members of the reli- 14 gious congregation, and appropriate personnel 15 at a community center, of or serving the quali- 16 fied individual. 17 SEC. 4. PROHIBITION OF DISCRIMINATORY POLICY. 18 An entity who receives a contract under section 372 19 of the Public Health Service Act (42 U.S.C. 274) to match 20 human organs and individuals, and otherwise carry out 21 the functions described in subsection (b) of that section, 22 shall not issue policies, recommendations, or other memo- 23 randa that would prohibit, or otherwise hinder, a qualified 24 VerDate Sep 11 2014 22:36 Apr 20, 2023 Jkt 039200 PO 00000 Frm 00009 Fmt 6652 Sfmt 6201 E:\BILLS\S1183.IS S1183 kjohnson on DSK79L0C42PROD with BILLS 10 •S 1183 IS individual’s access to an organ transplant solely on the 1 basis of that individual’s disability. 2 SEC. 5. PROHIBITION OF DISCRIMINATION. 3 (a) IN GENERAL.—Subject to subsection (b), a cov- 4 ered entity may not, solely on the basis of a qualified indi- 5 vidual’s disability— 6 (1) determine that the individual is ineligible to 7 receive an organ transplant or related services; 8 (2) deny the individual an organ transplant or 9 related services; 10 (3) refuse to refer the individual to an organ 11 transplant center or other related specialist for the 12 purpose of receipt of an organ transplant or other 13 related services; or 14 (4) refuse to place the individual on an organ 15 transplant waiting list. 16 (b) EXCEPTION.— 17 (1) IN GENERAL.— 18 (A) MEDICALLY SIGNIFICANT DISABIL- 19 ITIES.—Notwithstanding subsection (a), a cov- 20 ered entity may take a qualified individual’s 21 disability into account when making a health 22 care treatment or coverage recommendation or 23 decision, solely to the extent that the disability 24 has been found by a physician, following an in- 25 VerDate Sep 11 2014 22:36 Apr 20, 2023 Jkt 039200 PO 00000 Frm 00010 Fmt 6652 Sfmt 6201 E:\BILLS\S1183.IS S1183 kjohnson on DSK79L0C42PROD with BILLS 11 •S 1183 IS dividualized evaluation of the potential recipi- 1 ent, to be medically significant to the receipt of 2 the organ transplant or related services, as the 3 case may be. 4 (B) CONSTRUCTION.—Subparagraph (A) 5 shall not be construed to require a referral or 6 recommendation for, or the performance of, a 7 medically inappropriate organ transplant or 8 medically inappropriate related services. 9 (2) CLARIFICATION.—If a qualified individual 10 has the necessary support network to provide a rea- 11 sonable assurance that the qualified individual will 12 be able to comply with health requirements following 13 an organ transplant or receipt of related services, as 14 the case may be, the qualified individual’s inability 15 to independently comply with those requirements 16 may not be construed to be medically significant for 17 purposes of paragraph (1). 18 (c) REASONABLE MODIFICATIONS.—A covered entity 19 shall make reasonable modifications to policies or practices 20 (including procedures) of such entity if such modifications 21 are necessary to make an organ transplant or related serv- 22 ices available to qualified individuals with disabilities, un- 23 less the entity can demonstrate that making such modi- 24 VerDate Sep 11 2014 22:36 Apr 20, 2023 Jkt 039200 PO 00000 Frm 00011 Fmt 6652 Sfmt 6201 E:\BILLS\S1183.IS S1183 kjohnson on DSK79L0C42PROD with BILLS 12 •S 1183 IS fications would fundamentally alter the nature of such 1 policies or practices. 2 (d) CLARIFICATIONS.— 3 (1) NO DENIAL OF SERVICES BECAUSE OF AB- 4 SENCE OF AUXILIARY AIDS AND SERVICES.—For 5 purposes of this section, a covered entity shall take 6 such steps as may be necessary to ensure that a 7 qualified individual with a disability is not denied a 8 procedure associated with the receipt of an organ 9 transplant or related services, because of the absence 10 of auxiliary aids and services, unless the covered en- 11 tity can demonstrate that taking such steps would 12 fundamentally alter the nature of the procedure 13 being offered or would result in an undue burden on 14 the entity. 15 (2) COMPLIANCE WITH OTHER LAW.—Nothing 16 in this section shall be construed— 17 (A) to prevent a covered entity from pro- 18 viding organ transplants or related services at 19 a level that is greater than the level that is [Text truncated for display. 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