| 1 | 1 | | I |
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| 2 | 2 | | 119THCONGRESS |
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| 3 | 3 | | 1 |
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| 4 | 4 | | STSESSION H. R. 1520 |
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| 5 | 5 | | To prohibit discrimination on the basis of mental or physical disability in |
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| 6 | 6 | | cases of organ transplants. |
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| 7 | 7 | | IN THE HOUSE OF REPRESENTATIVES |
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| 8 | 8 | | FEBRUARY24, 2025 |
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| 9 | 9 | | Mrs. C |
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| 10 | 10 | | AMMACK(for herself, Mrs. DINGELL, Mr. ISSA, Ms. WASSERMAN |
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| 11 | 11 | | S |
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| 12 | 12 | | CHULTZ, and Mr. SESSIONS) introduced the following bill; which was re- |
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| 13 | 13 | | ferred to the Committee on Energy and Commerce |
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| 14 | 14 | | A BILL |
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| 15 | 15 | | To prohibit discrimination on the basis of mental or physical |
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| 16 | 16 | | disability in cases of organ transplants. |
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| 17 | 17 | | Be it enacted by the Senate and House of Representa-1 |
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| 18 | 18 | | tives of the United States of America in Congress assembled, 2 |
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| 19 | 19 | | SECTION 1. SHORT TITLE. 3 |
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| 20 | 20 | | This Act may be cited as the ‘‘Charlotte Woodward 4 |
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| 21 | 21 | | Organ Transplant Discrimination Prevention Act’’. 5 |
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| 22 | 22 | | SEC. 2. DEFINITIONS. 6 |
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| 23 | 23 | | In this Act: 7 |
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| 24 | 24 | | (1) A |
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| 25 | 25 | | UXILIARY AIDS AND SERVICES .—The term 8 |
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| 26 | 26 | | ‘‘auxiliary aids and services’’ has the meaning given 9 |
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| 28 | 28 | | kjohnson on DSK7ZCZBW3PROD with $$_JOB 2 |
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| 29 | 29 | | •HR 1520 IH |
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| 30 | 30 | | the term in section 4 of the Americans with Disabil-1 |
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| 31 | 31 | | ities Act of 1990 (42 U.S.C. 12103). 2 |
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| 32 | 32 | | (2) C |
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| 33 | 33 | | OVERED ENTITY.—The term ‘‘covered en-3 |
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| 34 | 34 | | tity’’ means any licensed provider of health care 4 |
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| 35 | 35 | | services (including licensed health care practitioners, 5 |
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| 36 | 36 | | hospitals, nursing facilities, laboratories, inter-6 |
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| 37 | 37 | | mediate care facilities, psychiatric residential treat-7 |
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| 38 | 38 | | ment facilities, institutions for individuals with intel-8 |
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| 39 | 39 | | lectual or developmental disabilities, and prison 9 |
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| 40 | 40 | | health centers), and any transplant hospital (as de-10 |
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| 41 | 41 | | fined in section 121.2 of title 42, Code of Federal 11 |
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| 42 | 42 | | Regulations or a successor regulation), that— 12 |
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| 43 | 43 | | (A) is in interstate commerce; or 13 |
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| 44 | 44 | | (B) provides health care services in a man-14 |
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| 45 | 45 | | ner that— 15 |
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| 46 | 46 | | (i) substantially affects or has a sub-16 |
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| 47 | 47 | | stantial relation to interstate commerce; or 17 |
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| 48 | 48 | | (ii) includes use of an instrument (in-18 |
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| 49 | 49 | | cluding an instrument of transportation or 19 |
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| 50 | 50 | | communication) of interstate commerce. 20 |
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| 51 | 51 | | (3) D |
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| 52 | 52 | | ISABILITY.—The term ‘‘disability’’ has the 21 |
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| 53 | 53 | | meaning given the term in section 3 of the Ameri-22 |
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| 54 | 54 | | cans with Disabilities Act of 1990 (42 U.S.C. 23 |
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| 55 | 55 | | 12102). 24 |
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| 57 | 57 | | kjohnson on DSK7ZCZBW3PROD with $$_JOB 3 |
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| 58 | 58 | | •HR 1520 IH |
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| 59 | 59 | | (4) HUMAN ORGAN.—The term ‘‘human organ’’ 1 |
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| 60 | 60 | | has the meaning given the term in section 301(c) of 2 |
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| 61 | 61 | | the National Organ Transplant Act (42 U.S.C. 3 |
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| 62 | 62 | | 274e(c)). 4 |
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| 63 | 63 | | (5) O |
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| 64 | 64 | | RGAN TRANSPLANT .—The term ‘‘organ 5 |
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| 65 | 65 | | transplant’’ means the transplantation or trans-6 |
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| 66 | 66 | | fusion of a donated human organ into the body of 7 |
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| 67 | 67 | | another human for the purpose of treating a medical 8 |
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| 68 | 68 | | condition. 9 |
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| 69 | 69 | | (6) Q |
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| 70 | 70 | | UALIFIED INDIVIDUAL.—The term ‘‘quali-10 |
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| 71 | 71 | | fied individual’’ means an individual who, with or 11 |
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| 72 | 72 | | without a support network, provision of auxiliary 12 |
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| 73 | 73 | | aids and services, or reasonable modifications to 13 |
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| 74 | 74 | | policies or practices, meets eligibility requirements 14 |
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| 75 | 75 | | for the receipt of a human organ. 15 |
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| 76 | 76 | | (7) R |
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| 77 | 77 | | EASONABLE MODIFICATIONS TO POLICIES 16 |
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| 78 | 78 | | OR PRACTICES.—The term ‘‘reasonable modifications 17 |
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| 79 | 79 | | to policies or practices’’ includes— 18 |
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| 80 | 80 | | (A) communication with persons respon-19 |
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| 81 | 81 | | sible for supporting a qualified individual with 20 |
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| 82 | 82 | | postsurgical or other care following an organ 21 |
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| 83 | 83 | | transplant or related services, including support 22 |
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| 84 | 84 | | with medication; 23 |
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| 85 | 85 | | (B) consideration, in determining whether 24 |
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| 86 | 86 | | a qualified individual will be able to comply 25 |
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| 88 | 88 | | kjohnson on DSK7ZCZBW3PROD with $$_JOB 4 |
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| 89 | 89 | | •HR 1520 IH |
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| 90 | 90 | | with health requirements following an organ 1 |
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| 91 | 91 | | transplant or receipt of related services, of sup-2 |
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| 92 | 92 | | port networks available to the qualified indi-3 |
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| 93 | 93 | | vidual, including family, friends, and providers 4 |
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| 94 | 94 | | of home and community-based services, includ-5 |
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| 95 | 95 | | ing home and community-based services funded 6 |
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| 96 | 96 | | through the Medicare or Medicaid program 7 |
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| 97 | 97 | | under title XVIII or XIX, respectively, of the 8 |
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| 98 | 98 | | Social Security Act (42 U.S.C. 1395 et seq., 9 |
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| 99 | 99 | | 1396 et seq.), another health plan in which the 10 |
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| 100 | 100 | | qualified individual is enrolled, or any program 11 |
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| 101 | 101 | | or source of funding available to the qualified 12 |
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| 102 | 102 | | individual; and 13 |
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| 103 | 103 | | (C) the use of supported decision-making, 14 |
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| 104 | 104 | | when needed, by a qualified individual. 15 |
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| 105 | 105 | | (8) R |
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| 106 | 106 | | ELATED SERVICES.—The term ‘‘related 16 |
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| 107 | 107 | | services’’ means services related to an organ trans-17 |
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| 108 | 108 | | plant that consist of— 18 |
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| 109 | 109 | | (A) evaluation; 19 |
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| 110 | 110 | | (B) counseling; 20 |
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| 111 | 111 | | (C) treatment, including postoperative 21 |
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| 112 | 112 | | treatment, and care; 22 |
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| 113 | 113 | | (D) provision of information; and 23 |
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| 114 | 114 | | (E) any other service recommended or re-24 |
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| 115 | 115 | | quired by a physician. 25 |
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| 117 | 117 | | kjohnson on DSK7ZCZBW3PROD with $$_JOB 5 |
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| 118 | 118 | | •HR 1520 IH |
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| 119 | 119 | | (9) SUPPORTED DECISION -MAKING.—The term 1 |
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| 120 | 120 | | ‘‘supported decision-making’’ means the use of a 2 |
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| 121 | 121 | | support person to assist a qualified individual in 3 |
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| 122 | 122 | | making health care decisions, communicate informa-4 |
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| 123 | 123 | | tion to the qualified individual, or ascertain a quali-5 |
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| 124 | 124 | | fied individual’s wishes. Such term includes— 6 |
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| 125 | 125 | | (A) the inclusion of the individual’s attor-7 |
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| 126 | 126 | | ney-in-fact or health care proxy, or any person 8 |
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| 127 | 127 | | of the individual’s choice, in communications 9 |
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| 128 | 128 | | about the individual’s health care; 10 |
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| 129 | 129 | | (B) permitting the individual to designate 11 |
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| 130 | 130 | | a person of the individual’s choice for the pur-12 |
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| 131 | 131 | | poses of supporting that individual in commu-13 |
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| 132 | 132 | | nicating, processing information, or making 14 |
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| 133 | 133 | | health care decisions; 15 |
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| 134 | 134 | | (C) providing auxiliary aids and services to 16 |
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| 135 | 135 | | facilitate the individual’s ability to communicate 17 |
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| 136 | 136 | | and process health-related information, includ-18 |
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| 137 | 137 | | ing providing use of assistive communication 19 |
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| 138 | 138 | | technology; 20 |
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| 139 | 139 | | (D) providing health information to per-21 |
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| 140 | 140 | | sons designated by the individual, consistent 22 |
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| 141 | 141 | | with the regulations promulgated under section 23 |
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| 142 | 142 | | 264(c) of the Health Insurance Portability and 24 |
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| 143 | 143 | | Accountability Act of 1996 (42 U.S.C. 1320d– 25 |
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| 145 | 145 | | kjohnson on DSK7ZCZBW3PROD with $$_JOB 6 |
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| 146 | 146 | | •HR 1520 IH |
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| 147 | 147 | | 2 note) and other applicable laws and regula-1 |
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| 148 | 148 | | tions governing disclosure of health informa-2 |
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| 149 | 149 | | tion; 3 |
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| 150 | 150 | | (E) providing health information in a for-4 |
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| 151 | 151 | | mat that is readily understandable by the indi-5 |
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| 152 | 152 | | vidual; and 6 |
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| 153 | 153 | | (F) working with a court-appointed guard-7 |
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| 154 | 154 | | ian or other person responsible for making 8 |
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| 155 | 155 | | health care decisions on behalf of the individual, 9 |
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| 156 | 156 | | to ensure that the individual is included in deci-10 |
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| 157 | 157 | | sions involving the health care of the individual 11 |
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| 158 | 158 | | and that health care decisions are in accordance 12 |
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| 159 | 159 | | with the individual’s own expressed interests. 13 |
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| 160 | 160 | | (10) S |
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| 161 | 161 | | UPPORT NETWORK .—The term ‘‘support 14 |
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| 162 | 162 | | network’’ means, with respect to a qualified indi-15 |
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| 163 | 163 | | vidual, 1 or more people who are— 16 |
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| 164 | 164 | | (A) selected by the qualified individual or 17 |
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| 165 | 165 | | by the qualified individual and the guardian of 18 |
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| 166 | 166 | | the qualified individual, to provide assistance to 19 |
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| 167 | 167 | | the qualified individual or guidance to that 20 |
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| 168 | 168 | | qualified individual in understanding issues, 21 |
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| 169 | 169 | | making plans for the future, or making complex 22 |
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| 170 | 170 | | decisions; and 23 |
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| 171 | 171 | | (B) who may include the family members, 24 |
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| 172 | 172 | | friends, unpaid supporters, members of the reli-25 |
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| 174 | 174 | | kjohnson on DSK7ZCZBW3PROD with $$_JOB 7 |
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| 175 | 175 | | •HR 1520 IH |
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| 176 | 176 | | gious congregation, and appropriate personnel 1 |
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| 177 | 177 | | at a community center, of or serving the quali-2 |
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| 178 | 178 | | fied individual. 3 |
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| 179 | 179 | | SEC. 3. PROHIBITION OF DISCRIMINATORY POLICY. 4 |
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| 180 | 180 | | The board of directors described in section 5 |
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| 181 | 181 | | 372(b)(1)(B) of the Public Health Service Act (42 U.S.C. 6 |
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| 182 | 182 | | 274(b)(1)(B)) shall not issue policies, recommendations, 7 |
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| 183 | 183 | | or other memoranda that would prohibit, or otherwise 8 |
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| 184 | 184 | | hinder, a qualified individual’s access to an organ trans-9 |
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| 185 | 185 | | plant solely on the basis of that individual’s disability. 10 |
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| 186 | 186 | | SEC. 4. PROHIBITION OF DISCRIMINATION. 11 |
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| 187 | 187 | | (a) I |
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| 188 | 188 | | NGENERAL.—Subject to subsection (b), a cov-12 |
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| 189 | 189 | | ered entity may not, solely on the basis of a qualified indi-13 |
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| 190 | 190 | | vidual’s disability— 14 |
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| 191 | 191 | | (1) determine that the individual is ineligible to 15 |
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| 192 | 192 | | receive an organ transplant or related services; 16 |
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| 193 | 193 | | (2) deny the individual an organ transplant or 17 |
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| 194 | 194 | | related services; 18 |
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| 195 | 195 | | (3) refuse to refer the individual to an organ 19 |
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| 196 | 196 | | transplant center or other related specialist for the 20 |
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| 197 | 197 | | purpose of receipt of an organ transplant or other 21 |
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| 198 | 198 | | related services; or 22 |
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| 199 | 199 | | (4) refuse to place the individual on an organ 23 |
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| 200 | 200 | | transplant waiting list. 24 |
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| 201 | 201 | | (b) E |
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| 202 | 202 | | XCEPTION.— 25 |
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| 204 | 204 | | kjohnson on DSK7ZCZBW3PROD with $$_JOB 8 |
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| 205 | 205 | | •HR 1520 IH |
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| 206 | 206 | | (1) IN GENERAL.— 1 |
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| 207 | 207 | | (A) M |
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| 208 | 208 | | EDICALLY SIGNIFICANT DISABIL -2 |
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| 209 | 209 | | ITIES.—Notwithstanding subsection (a), a cov-3 |
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| 210 | 210 | | ered entity may take a qualified individual’s 4 |
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| 211 | 211 | | disability into account when making a health 5 |
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| 212 | 212 | | care treatment or coverage recommendation or 6 |
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| 213 | 213 | | decision, solely to the extent that the disability 7 |
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| 214 | 214 | | has been found by a physician, following an in-8 |
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| 215 | 215 | | dividualized evaluation of the potential recipi-9 |
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| 216 | 216 | | ent, to be medically significant to the receipt of 10 |
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| 217 | 217 | | the organ transplant or related services, as the 11 |
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| 218 | 218 | | case may be. 12 |
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| 219 | 219 | | (B) C |
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| 220 | 220 | | ONSTRUCTION.—Subparagraph (A) 13 |
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| 221 | 221 | | shall not be construed to require a referral or 14 |
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| 222 | 222 | | recommendation for, or the performance of, a 15 |
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| 223 | 223 | | medically inappropriate organ transplant or 16 |
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| 224 | 224 | | medically inappropriate related services. 17 |
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| 225 | 225 | | (2) C |
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| 226 | 226 | | LARIFICATION.—If a qualified individual 18 |
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| 227 | 227 | | has the necessary support network to provide a rea-19 |
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| 228 | 228 | | sonable assurance that the qualified individual will 20 |
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| 229 | 229 | | be able to comply with health requirements following 21 |
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| 230 | 230 | | an organ transplant or receipt of related services, as 22 |
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| 231 | 231 | | the case may be, the qualified individual’s inability 23 |
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| 232 | 232 | | to independently comply with those requirements 24 |
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| 234 | 234 | | kjohnson on DSK7ZCZBW3PROD with $$_JOB 9 |
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| 235 | 235 | | •HR 1520 IH |
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| 236 | 236 | | may not be construed to be medically significant for 1 |
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| 237 | 237 | | purposes of paragraph (1). 2 |
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| 238 | 238 | | (c) R |
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| 239 | 239 | | EASONABLEMODIFICATIONS.—A covered entity 3 |
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| 240 | 240 | | shall make reasonable modifications to policies or practices 4 |
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| 241 | 241 | | (including procedures) of such entity if such modifications 5 |
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| 242 | 242 | | are necessary to make an organ transplant or related serv-6 |
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| 243 | 243 | | ices available to qualified individuals with disabilities, un-7 |
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| 244 | 244 | | less the entity can demonstrate that making such modi-8 |
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| 245 | 245 | | fications would fundamentally alter the nature of such 9 |
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| 246 | 246 | | policies or practices. 10 |
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| 247 | 247 | | (d) C |
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| 248 | 248 | | LARIFICATIONS.— 11 |
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| 249 | 249 | | (1) N |
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| 250 | 250 | | O DENIAL OF SERVICES BECAUSE OF AB -12 |
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| 251 | 251 | | SENCE OF AUXILIARY AIDS AND SERVICES .—For 13 |
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| 252 | 252 | | purposes of this section, a covered entity shall take 14 |
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| 253 | 253 | | such steps as may be necessary to ensure that a 15 |
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| 254 | 254 | | qualified individual with a disability is not denied a 16 |
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| 255 | 255 | | procedure associated with the receipt of an organ 17 |
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| 256 | 256 | | transplant or related services, because of the absence 18 |
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| 257 | 257 | | of auxiliary aids and services, unless the covered en-19 |
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| 258 | 258 | | tity can demonstrate that taking such steps would 20 |
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| 259 | 259 | | fundamentally alter the nature of the procedure 21 |
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| 260 | 260 | | being offered or would result in an undue burden on 22 |
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| 261 | 261 | | the entity. 23 |
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| 262 | 262 | | (2) C |
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| 263 | 263 | | OMPLIANCE WITH OTHER LAW .—Nothing 24 |
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| 264 | 264 | | in this section shall be construed— 25 |
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| 266 | 266 | | kjohnson on DSK7ZCZBW3PROD with $$_JOB 10 |
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| 267 | 267 | | •HR 1520 IH |
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| 268 | 268 | | (A) to prevent a covered entity from pro-1 |
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| 269 | 269 | | viding organ transplants or related services at 2 |
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| 270 | 270 | | a level that is greater than the level that is re-3 |
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| 271 | 271 | | quired by this section; or 4 |
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| 272 | 272 | | (B) to limit the rights of an individual with 5 |
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| 273 | 273 | | a disability under, or to replace or limit the 6 |
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| 274 | 274 | | scope of obligations imposed by, the Americans 7 |
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| 275 | 275 | | with Disabilities Act of 1990 (42 U.S.C. 12101 8 |
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| 276 | 276 | | et seq.) including the provisions added to such 9 |
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| 277 | 277 | | Act by the ADA Amendments Act of 2008, sec-10 |
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| 278 | 278 | | tion 504 of the Rehabilitation Act of 1973 (29 11 |
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| 279 | 279 | | U.S.C. 794), section 1557 of the Patient Pro-12 |
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| 280 | 280 | | tection and Affordable Care Act (42 U.S.C. 13 |
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| 281 | 281 | | 18116), or any other applicable law. 14 |
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| 282 | 282 | | (e) E |
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| 283 | 283 | | NFORCEMENT.— 15 |
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| 284 | 284 | | (1) I |
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| 285 | 285 | | N GENERAL.—Any individual who alleges 16 |
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| 286 | 286 | | that a qualified individual was subject to a violation 17 |
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| 287 | 287 | | of this section by a covered entity may bring a claim 18 |
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| 288 | 288 | | regarding the allegation to the Office for Civil 19 |
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| 289 | 289 | | Rights of the Department of Health and Human 20 |
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| 290 | 290 | | Services, for expedited resolution, as appropriate. 21 |
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| 291 | 291 | | (2) R |
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| 292 | 292 | | ULE OF CONSTRUCTION .—Nothing in this 22 |
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| 293 | 293 | | subsection is intended to limit or replace available 23 |
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| 294 | 294 | | remedies under the Americans with Disabilities Act 24 |
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| 296 | 296 | | kjohnson on DSK7ZCZBW3PROD with $$_JOB 11 |
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| 297 | 297 | | •HR 1520 IH |
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| 298 | 298 | | of 1990 (42 U.S.C. 12101 et seq.) or any other ap-1 |
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| 299 | 299 | | plicable law. 2 |
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| 300 | 300 | | SEC. 5. APPLICATION TO EACH PART OF PROCESS. 3 |
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| 301 | 301 | | The provisions of this Act— 4 |
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| 302 | 302 | | (1) that apply to an organ transplant, also 5 |
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| 303 | 303 | | apply to the evaluation and listing of a qualified in-6 |
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| 304 | 304 | | dividual, and to the organ transplant and post- 7 |
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| 305 | 305 | | organ-transplant treatment of such an individual; 8 |
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| 306 | 306 | | and 9 |
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| 307 | 307 | | (2) that apply to related services, also apply to 10 |
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| 308 | 308 | | the process for receipt of related services by such an 11 |
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| 309 | 309 | | individual. 12 |
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| 310 | 310 | | SEC. 6. EFFECT ON OTHER LAWS. 13 |
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| 311 | 311 | | Nothing in this Act shall be construed to supersede 14 |
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| 312 | 312 | | any provision of any State or local law that provides great-15 |
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| 313 | 313 | | er rights to qualified individuals with respect to organ 16 |
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| 314 | 314 | | transplants than the rights established under this Act. 17 |
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| 315 | 315 | | Æ |
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| 317 | 317 | | kjohnson on DSK7ZCZBW3PROD with $$_JOB |
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