H. R. 1235
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
To prohibit discrimination on the basis of mental or physical disability in cases of anatomical gifts and organ transplants.
This Act may be cited as the
Charlotte Woodward Organ Transplant Discrimination Prevention Act.
Congress finds as follows:
The Americans with Disabilities Act, section 504 of the Rehabilitation Act of 1973, and section 1557 of the Patient Protection and Affordable Care Act (ACA) prohibit discrimination against individuals with disabilities in organ transplantation and the rationing of organs.
Despite these protections, there are findings and cases that show that individuals with disabilities are being denied organ transplants and related services solely based on the fact that they have a disability, as is documented by the National Council on Disability and others.
Sixteen States have crafted state level policy to prohibit organ transplant discrimination against individuals with disabilities, however, Federal action is required to protect Americans with disabilities and to enforce existing law regardless of the state in which they live.
Continuing cases of discrimination against individuals with disabilities calls for further clarity by Congress to which actions constitute discrimination within the existing legal context, which entities are covered, and the remedies available to individuals experiencing potential discrimination.
Licensed providers of health care services who perform organ transplants and related services in exchange for medical fees are engaging in an economic transaction with patients that occurs in or substantially impacts interstate commerce.
There are 11 geographic regions that are used for U.S. organ allocation with organs being transported across state lines for transplantation procedures.
Discrimination in organ transplantation limits individuals with disabilities from participating in a manner that allows equal access to interstate commerce.
The existence of arbitrary discrimination against individuals with disabilities in organ transplantation and related services burdens the flow of organs through legal channels of interstate commerce.
Congress is empowered to regulate and protect the instrumentalities of interstate commerce, persons, or things in interstate commerce, even though the threat may come only from intrastate activities.
Congress’ commerce authority includes the power to regulate those activities having substantial relation to interstate commerce and activities that substantially affect interstate commerce.
Nothing in this bill shall be construed to limit or replace the scope of obligations imposed by the Americans with Disabilities Act, section 504 of the Rehabilitation Act of 1973, section 1557 of the Affordable Care Act, or any other applicable law.
For purposes of this Act:
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.
Auxiliary aids and services
The term auxiliary aids and services includes—
qualified interpreters or other effective methods of making aurally delivered materials available to individuals with hearing impairments;
qualified readers, taped texts, or other effective methods of making visually delivered materials available to individuals with visual impairments;
provision of information in a format that is accessible for individuals with cognitive, neurological, developmental, or intellectual disabilities;
provision of supported decision-making services; and
acquisition or modification of equipment or devices.
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; or
any entity responsible for matching anatomical gift donors to potential recipients.
The term disability has the same meaning give such term in section 4 of the Americans with Disabilities Act of 1990.
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.
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.
Reasonable modifications to policies or practices
The term reasonable modifications to policies or practices include—
communication with individuals responsible for supporting an individual with postsurgical and post-transplantation care, including medication; and
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.
The term Secretary means the Secretary of Health and Human Services.
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—
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;
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;
providing auxiliary aids and services to facilitate the individual’s ability to communicate and process health-related information, including use of assistive communication technology;
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;
providing health information in a format that is readily understandable by the individual; and
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.
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.
Prohibition of discrimination
Subject to subsection (b), a covered entity may not, solely on the basis of a qualified individual’s mental or physical disability—
deem such individual ineligible to receive an anatomical gift or organ transplant;
deny such individual medical or related organ transplantation services, including evaluation, surgery, counseling, and postoperative treatment and care;
refuse to refer the individual to a transplant center or other related specialist for the purpose of evaluation or receipt of an organ transplant;
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
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.
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.
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).
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.
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.
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.
The provisions of this section apply to each part of the organ transplant process.
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—
may bring such a claim to the Office for Civil Rights of the Department of Health and Human Services for expedited resolution; and
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.
The injunctive and equitable relief available in a civil action brought under subsection (a)(2), with respect to a covered entity, includes—
requiring auxiliary aids or services to be made available by such entity;
requiring the modification of a policy, practice, or procedure of such entity; or
requiring facilities of such entity be made readily accessible and usable.
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.
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.