Charlotte Woodward Organ Transplant Discrimination Prevention Act

I 117TH CONGRESS 1ST SESSION H. R. 1235 To prohibit discrimination on the basis of mental or physical disability in cases of anatomical gifts and organ transplants. IN THE HOUSE OF REPRESENTATIVES FEBRUARY 23, 2021 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. 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 as follows: 7 (1) The Americans with Disabilities Act, section 8 504 of the Rehabilitation Act of 1973, and section 9 1557 of the Patient Protection and Affordable Care 10 VerDate Sep 11 2014 23:01 Mar 20, 2021 Jkt 019200 PO 00000 Frm 00001 Fmt 6652 Sfmt 6201 E:\BILLS\H1235.IH H1235 kjohnson on DSK79L0C42PROD with BILLS 2 •HR 1235 IH Act (ACA) prohibit discrimination against individ- 1 uals with disabilities in organ transplantation and 2 the rationing of organs. 3 (2) Despite these protections, there are findings 4 and cases that show that individuals with disabilities 5 are being denied organ transplants and related serv- 6 ices solely based on the fact that they have a dis- 7 ability, as is documented by the National Council on 8 Disability and others. 9 (3) Sixteen States have crafted state level policy 10 to prohibit organ transplant discrimination against 11 individuals with disabilities, however, Federal action 12 is required to protect Americans with disabilities and 13 to enforce existing law regardless of the state in 14 which they live. 15 (4) Continuing cases of discrimination against 16 individuals with disabilities calls for further clarity 17 by Congress to which actions constitute discrimina- 18 tion within the existing legal context, which entities 19 are covered, and the remedies available to individ- 20 uals experiencing potential discrimination. 21 (5) Licensed providers of health care services 22 who perform organ transplants and related services 23 in exchange for medical fees are engaging in an eco- 24 VerDate Sep 11 2014 23:01 Mar 20, 2021 Jkt 019200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6201 E:\BILLS\H1235.IH H1235 kjohnson on DSK79L0C42PROD with BILLS 3 •HR 1235 IH nomic transaction with patients that occurs in or 1 substantially impacts interstate commerce. 2 (6) There are 11 geographic regions that are 3 used for U.S. organ allocation with organs being 4 transported across state lines for transplantation 5 procedures. 6 (7) Discrimination in organ transplantation 7 limits individuals with disabilities from participating 8 in a manner that allows equal access to interstate 9 commerce. 10 (8) The existence of arbitrary discrimination 11 against individuals with disabilities in organ trans- 12 plantation and related services burdens the flow of 13 organs through legal channels of interstate com- 14 merce. 15 (9) Congress is empowered to regulate and pro- 16 tect the instrumentalities of interstate commerce, 17 persons, or things in interstate commerce, even 18 though the threat may come only from intrastate ac- 19 tivities. 20 (10) Congress’ commerce authority includes the 21 power to regulate those activities having substantial 22 relation to interstate commerce and activities that 23 substantially affect interstate commerce. 24 VerDate Sep 11 2014 23:01 Mar 20, 2021 Jkt 019200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\H1235.IH H1235 kjohnson on DSK79L0C42PROD with BILLS 4 •HR 1235 IH (11) Nothing in this bill shall be construed to 1 limit or replace the scope of obligations imposed by 2 the Americans with Disabilities Act, section 504 of 3 the Rehabilitation Act of 1973, section 1557 of the 4 Affordable Care Act, or any other applicable law. 5 SEC. 3. DEFINITIONS. 6 For purposes of this Act: 7 (1) ANATOMICAL GIFT.—The term ‘‘anatomical 8 gift’’ means a donation of all or part of a human 9 body that takes effect after the death of the donor 10 for the purpose of transplantation or transfusion. 11 (2) AUXILIARY AIDS AND SERVICES.—The term 12 ‘‘auxiliary aids and services’’ includes— 13 (A) qualified interpreters or other effective 14 methods of making aurally delivered materials 15 available to individuals with hearing impair- 16 ments; 17 (B) qualified readers, taped texts, or other 18 effective methods of making visually delivered 19 materials available to individuals with visual im- 20 pairments; 21 (C) provision of information in a format 22 that is accessible for individuals with cognitive, 23 neurological, developmental, or intellectual dis- 24 abilities; 25 VerDate Sep 11 2014 23:01 Mar 20, 2021 Jkt 019200 PO 00000 Frm 00004 Fmt 6652 Sfmt 6201 E:\BILLS\H1235.IH H1235 kjohnson on DSK79L0C42PROD with BILLS 5 •HR 1235 IH (D) provision of supported decision-making 1 services; and 2 (E) acquisition or modification of equip- 3 ment or devices. 4 (3) COVERED ENTITY.—The term ‘‘covered en- 5 tity’’ means— 6 (A) any licensed provider of health care 7 services, including licensed health care practi- 8 tioners, hospitals, nursing facilities, labora- 9 tories, intermediate care facilities, psychiatric 10 residential treatment facilities, institutions for 11 individuals with intellectual or developmental 12 disabilities, and prison health centers; or 13 (B) any entity responsible for matching 14 anatomical gift donors to potential recipients. 15 (4) DISABILITY.—The term ‘‘disability’’ has the 16 same meaning give such term in section 4 of the 17 Americans with Disabilities Act of 1990. 18 (5) ORGAN TRANSPLANT.—The term ‘‘organ 19 transplant’’ means the transplantation or trans- 20 fusion of a part of a human body into the body of 21 another for the purpose of treating or curing a med- 22 ical condition. 23 (6) QUALIFIED INDIVIDUAL.—The term ‘‘quali- 24 fied individual’’ means an individual who, with or 25 VerDate Sep 11 2014 23:01 Mar 20, 2021 Jkt 019200 PO 00000 Frm 00005 Fmt 6652 Sfmt 6201 E:\BILLS\H1235.IH H1235 kjohnson on DSK79L0C42PROD with BILLS 6 •HR 1235 IH without a support network, provision of auxiliary 1 aids and services, or reasonable modifications to 2 policies or practices, meets eligibility requirements 3 for the receipt of an anatomical gift. 4 (7) REASONABLE MODIFICATIONS TO POLICIES 5 OR PRACTICES.—The term ‘‘reasonable modifications 6 to policies or practices’’ include— 7 (A) communication with individuals re- 8 sponsible for supporting an individual with 9 postsurgical and post-transplantation care, in- 10 cluding medication; and 11 (B) consideration of support networks 12 available to the individual, including family, 13 friends, and home and community-based serv- 14 ices, including home and community-based serv- 15 ices funded through medicaid, medicare, an- 16 other health plan in which the individual is en- 17 rolled, or any program or source of funding 18 available to the individual, in determining 19 whether the individual is able to comply with 20 posttransplant medical requirements. 21 (8) SECRETARY.—The term ‘‘Secretary’’ means 22 the Secretary of Health and Human Services. 23 (9) SUPPORTED DECISION MAKING.—The term 24 ‘‘supported decision making’’ means the use of a 25 VerDate Sep 11 2014 23:01 Mar 20, 2021 Jkt 019200 PO 00000 Frm 00006 Fmt 6652 Sfmt 6201 E:\BILLS\H1235.IH H1235 kjohnson on DSK79L0C42PROD with BILLS 7 •HR 1235 IH support person to assist an individual in making 1 medical decisions, communicate information to the 2 individual, or ascertain an individual’s wishes. Such 3 term may include— 4 (A) the inclusion of the individual’s attor- 5 ney-in-fact, health care proxy, or any person of 6 the individual’s choice in communications about 7 the individual’s medical care; 8 (B) permitting the individual to designate 9 a person of their choice for the purposes of sup- 10 porting that individual in communicating, proc- 11 essing information, or making medical deci- 12 sions; 13 (C) providing auxiliary aids and services to 14 facilitate the individual’s ability to communicate 15 and process health-related information, includ- 16 ing use of assistive communication technology; 17 (D) providing information to persons des- 18 ignated by the individual, consistent with the 19 provisions of the Health Insurance Portability 20 and Accountability Act of 1996, (4 U.S.C. 13 21 et seq.), and other applicable laws and regula- 22 tions governing disclosure of health informa- 23 tion; 24 VerDate Sep 11 2014 23:01 Mar 20, 2021 Jkt 019200 PO 00000 Frm 00007 Fmt 6652 Sfmt 6201 E:\BILLS\H1235.IH H1235 kjohnson on DSK79L0C42PROD with BILLS 8 •HR 1235 IH (E) providing health information in a for- 1 mat that is readily understandable by the indi- 2 vidual; and 3 (F) working with a court-appointed guard- 4 ian or other individual responsible for making 5 medical decisions on behalf of the individual, to 6 ensure that the individual is included in deci- 7 sions involving the health care of the individual 8 and that medical decisions are in accordance 9 with the individual’s own expressed interests. 10 (10) SUPPORT NETWORK.—The term ‘‘support 11 network’’ means, with respect to a person, one or 12 more individuals selected by the person or by the 13 person and the guardian of the person, to provide 14 assistance to that person or guidance to that person 15 in understanding issues, making plans for the fu- 16 ture, or making complex decisions, including the per- 17 son’s family, friends, unpaid supporters, religious 18 congregations, and community centers. 19 SEC. 4. PROHIBITION OF DISCRIMINATION. 20 (a) IN GENERAL.—Subject to subsection (b), a cov- 21 ered entity may not, solely on the basis of a qualified indi- 22 vidual’s mental or physical disability— 23 (1) deem such individual ineligible to receive an 24 anatomical gift or organ transplant; 25 VerDate Sep 11 2014 23:01 Mar 20, 2021 Jkt 019200 PO 00000 Frm 00008 Fmt 6652 Sfmt 6201 E:\BILLS\H1235.IH H1235 kjohnson on DSK79L0C42PROD with BILLS 9 •HR 1235 IH (2) deny such individual medical or related 1 organ transplantation services, including evaluation, 2 surgery, counseling, and postoperative treatment and 3 care; 4 (3) refuse to refer the individual to a transplant 5 center or other related specialist for the purpose of 6 evaluation or receipt of an organ transplant; 7 (4) refuse to place an individual on an organ 8 transplant waiting list, or placement of the indi- 9 vidual at a lower-priority position on the list than 10 the position at which the individual would have been 11 placed if not for the disability of the individual; or 12 (5) decline insurance coverage for such indi- 13 vidual for any procedure associated with the receipt 14 of an anatomical gift, including post-transplantation 15 care if such procedure would be covered under such 16 coverage for such individual if not for the disability 17 of the individual. 18 (b) EXCEPTION.— 19 (1) IN GENERAL.—Notwithstanding subsection 20 (a), a covered entity may take an individual’s dis- 21 ability into account when making treatment or cov- 22 erage recommendations or decisions, solely to the ex- 23 tent that the physical or mental disability has been 24 found by a physician, following an individualized 25 VerDate Sep 11 2014 23:01 Mar 20, 2021 Jkt 019200 PO 00000 Frm 00009 Fmt 6652 Sfmt 6201 E:\BILLS\H1235.IH H1235 kjohnson on DSK79L0C42PROD with BILLS 10 •HR 1235 IH evaluation of the potential recipient, to be medically 1 significant to the provision of the anatomical gift. 2 The previous sentence shall not be treated as requir- 3 ing referrals or recommendations for, or the per- 4 formance of, medically inappropriate organ trans- 5 plants. 6 (2) CLARIFICATION.—If an individual has the 7 necessary support system to provide reasonable as- 8 surance that the individual will comply with 9 posttransplant medical requirements, the individual’s 10 inability to independently comply with those require- 11 ments may not be deemed to be medically significant 12 for purposes of paragraph (1). 13 (c) REASONABLE MODIFICATIONS.—A covered entity 14 shall make reasonable modifications to policies, practices, 15 or procedures of such entity if such modifications are nec- 16 essary to make services such as transplantation-related 17 counseling, information, coverage, or treatment available 18 to qualified individuals with disabilities, unless the entity 19 can demonstrate that making such modifications would 20 fundamentally alter the nature of such services. 21 (d) CLARIFICATIONS.— 22 (1) A covered entity shall take such steps as 23 may be necessary to ensure that no qualified indi- 24 vidual with a disability is denied services such as 25 VerDate Sep 11 2014 23:01 Mar 20, 2021 Jkt 019200 PO 00000 Frm 00010 Fmt 6652 Sfmt 6201 E:\BILLS\H1235.IH H1235 kjohnson on DSK79L0C42PROD with BILLS 11 •HR 1235 IH transplantation-related counseling, information, cov- 1 erage, or treatment because of the absence of auxil- 2 iary aids and services, unless the entity can dem- 3 onstrate that taking such steps would fundamentally 4 alter the nature of the services being offered or 5 would result in an undue burden. 6 (2) A covered entity shall otherwise comply with 7 the requirements of titles II and III of the Ameri- 8 cans with Disabilities Act of 1990 and the Ameri- 9 cans with Disabilities Act Amendments Act of 2008. 10 (3) The provisions of this section apply to each 11 part of the organ transplant process. 12 SEC. 5. ENFORCEMENT. 13 (a) IN GENERAL.—Any individual with a claim, with 14 respect to a covered entity, to be (or to have been) subject 15 to discrimination in violation of section 3— 16 (1) may bring such a claim to the Office for 17 Civil Rights of the Department of Health and 18 Human Services for expedited resolution; and 19 (2) whether or not such a claim is brought 20 under paragraph (1) or a violation is found pursuant 21 to paragraph (1), may bring a civil action before the 22 appropriate Federal court for injunctive or other eq- 23 uitable relief, including the relief described in sub- 24 VerDate Sep 11 2014 23:01 Mar 20, 2021 Jkt 019200 PO 00000 Frm 00011 Fmt 6652 Sfmt 6201 E:\BILLS\H1235.IH H1235 kjohnson on DSK79L0C42PROD with BILLS 12 •HR 1235 IH section (b), against such covered entity to enforce 1 compliance of such covered entity with such section. 2 (b) RELIEF AVAILABLE.—The injunctive and equi- 3 table relief available in a civil action brought under sub- 4 section (a)(2), with respect to a covered entity, includes— 5 (1) requiring auxiliary aids or services to be 6 made available by such [Text truncated for display. 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