Charlotte Woodward Organ Transplant Discrimination Prevention Act

This Act may be cited as the Charlotte Woodward Organ Transplant Discrimination Prevention Act.
In this Act:
The term auxiliary aids and services has the meaning given the term in section 4 of the Americans with Disabilities Act of 1990 (42 U.S.C. 12103).
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 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;
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; and
the use of supported decision-making, when needed, by a 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 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 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, 1 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.
The board of directors described in section 372(b)(1)(B) of the Public Health Service Act (42 U.S.C. 274(b)(1)(B)) 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.
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 (Public Law 110–325), 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, as appropriate.
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.
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.
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.
This Act may be cited as the Charlotte Woodward Organ Transplant Discrimination Prevention Act.
In this Act:
The term auxiliary aids and services has the meaning given the term in section 4 of the Americans with Disabilities Act of 1990 (42 U.S.C. 12103).
The term covered entity means any—
entity operating a program or activity, involving an organ transplant or related services, receiving Federal financial assistance; or
public entity covered by title II of the Americans with Disabilities Act of 1990 (42 U.S.C. 12131 et seq.) that carries out activities relating to such a transplant or services.
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 organ has the meaning given the term human organ in section 301(c) of the National Organ Transplant Act (42 U.S.C. 274e(c)).
The term qualified individual with a disability means such individual within the meaning of the term as used in title II of the Americans with Disabilities Act of 1990 (42 U.S.C. 12131 et seq.), section 504 of the Rehabilitation Act of 1973 (29 U.S.C. 794), and any other applicable Federal law, including their implementing regulations.
The term reasonable modifications means such modifications within the meaning of the term as used in or for the Americans with Disabilities Act of 1990 (42 U.S.C. 12101 et seq.), section 504 of the Rehabilitation Act of 1973 (29 U.S.C. 794), and any other applicable Federal law, including their implementing regulations.
The term related services means services, including the process by which an individual receives such services, related to an organ transplant that consist of—
evaluation and listing on the transplant waiting lists;
counseling;
treatment, including postoperative treatment, and care;
provision of information; and
any other service recommended or required by a physician.
Section 372(b)(2)(B) of the Public Health Service Act (42 U.S.C. 274(b)(2)(B)) is amended to read as follows:
establish membership criteria and medical criteria for allocating organs, which shall not include medical criteria that would discriminate on the basis of disability in access to an organ transplant, and provide to members of the public an opportunity to comment with respect to such membership and medical criteria;
Consistent with section 504 of the Rehabilitation Act of 1973 (29 U.S.C. 794), the Americans with Disabilities Act of 1990 (42 U.S.C. 12101 et seq.), and any other applicable Federal law, including their implementing regulations, and, subject to subsection (b), a covered entity shall not, on the basis of the disability of a qualified individual with a 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;
refuse to place the individual on the transplant waiting lists; or
otherwise discriminate based on disability with respect to the provision of an organ transplant or related services.
Notwithstanding subsection (a), following an individualized assessment by a covered entity, the covered entity may take the disability of a qualified individual with a disability into account in carrying out a program or activity consistent with section 504 of the Rehabilitation Act of 1973 (29 U.S.C. 794), the Americans with Disabilities Act of 1990 (42 U.S.C. 12101 et seq.), and any other applicable Federal law, including their implementing regulations, including section 84.56 of title 45, Code of Federal Regulations, as in effect on the date of enactment of this Act.
If a qualified individual with a disability would be able to comply with the health requirements following an organ transplant or provision of related services if given the necessary reasonable modifications to policies, practices, or procedures, or appropriate auxiliary aids and services, the individual’s inability to independently comply with those requirements may not be taken into account for purposes of paragraph (1).
Consistent with section 504 of the Rehabilitation Act of 1973 (29 U.S.C. 794), the Americans with Disabilities Act of 1990 (42 U.S.C. 12101 et seq.), and any other applicable Federal law, and their implementing regulations, a covered entity shall make reasonable modifications to policies, practices, or procedures when such modifications are necessary to avoid discrimination on the basis of disability as described in subsection (a) except as provided in subsection (b), unless the entity can demonstrate that making such modifications would fundamentally alter the nature of the program or activity involved.
For the purposes of subsection (b)(2) and subparagraph (A), the reasonable modifications may include the use of supported decision-making, when needed, by a qualified individual with a disability.
Consistent with section 504 of the Rehabilitation Act of 1973 (29 U.S.C. 794), the Americans with Disabilities Act of 1990 (42 U.S.C. 12101 et seq.), and any other applicable Federal law, and their implementing regulations, a covered entity shall take such steps as may be necessary to ensure that no qualified individual with a disability is excluded, denied services, segregated, or otherwise discriminated against, based on disability, from or for a procedure associated with the receipt of an organ transplant or related services because of the absence of appropriate auxiliary aids and services, unless the covered entity can demonstrate that taking such steps would fundamentally alter the nature of the program or activity involved or would result in an undue burden.
Nothing in this subsection shall be construed to modify or alter the requirements for privacy or security of individually identifiable health information under the privacy, security, and breach notification rules under parts 160 and 164 of title 45, Code of Federal Regulations (or a successor regulation) or for the confidentiality of substance use disorder patient records under part 2 of title 42, Code of Federal Regulations (or a successor regulation).
When a complaint regarding an allegation of discrimination on the basis of disability with respect to the provision of an organ transplant or related services is brought to the Office for Civil Rights of the Department of Health and Human Services, such Office shall consider the complaint, consistent with the Office's practices and procedures, for expedited complaint resolution or early complaint resolution, as appropriate and as appropriate, may require a remedy, consistent with the enforcement remedies for a violation of section 504 of the Rehabilitation Act of 1973 (29 U.S.C. 794), the Americans with Disabilities Act of 1990 (42 U.S.C. 12101 et seq.), and any other applicable Federal law, including their implementing regulations.
Not later than 1 year after the date of enactment of this Act, and annually thereafter, the Secretary shall prepare and submit to the committees specified in paragraph (2) a report that contains—
a description of the activities carried out under this section, which shall, at a minimum, contain—
information concerning the number of complaints received related to discrimination as described in subsection (a);
a description of the process by which the Office for Civil Rights of the Department of Health and Human Services carried out the expedited complaint resolution or early complaint resolution, where appropriate;
the results of such complaints; and
information stating the resources necessary for such Office to carry out such activities; and
recommendations by the Secretary to improve enforcement of this Act.
The Secretary shall submit the report to the Committee on Energy and Commerce of the House of Representatives, and to the Committee on Health, Education, Labor, and Pensions of the Senate.
Nothing in this Act shall be construed to invalidate or limit the rights, remedies, and procedures, including legal standards, available to an individual aggrieved under—
the Americans with Disabilities Act of 1990 (42 U.S.C. 12101 et seq.);
section 504 of the Rehabilitation Act of 1973 (29 U.S.C. 794); or
any other applicable Federal or State law that provides additional protections against discrimination on the basis of disability with respect to organ transplants or related services.