[Congressional Bills 117th Congress]
[From the U.S. Government Publishing Office]
[H.R. 1235 Introduced in House (IH)]
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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 Representatives of the
United States of America in Congress assembled,
SECTION 1. SHORT TITLE.
This Act may be cited as the ``Charlotte Woodward Organ Transplant
Discrimination Prevention Act''.
SEC. 2. FINDINGS.
Congress finds as follows:
(1) 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.
(2) 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.
(3) 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.
(4) 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.
(5) 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.
(6) There are 11 geographic regions that are used for U.S.
organ allocation with organs being transported across state
lines for transplantation procedures.
(7) Discrimination in organ transplantation limits
individuals with disabilities from participating in a manner
that allows equal access to interstate commerce.
(8) 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.
(9) 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.
(10) Congress' commerce authority includes the power to
regulate those activities having substantial relation to
interstate commerce and activities that substantially affect
interstate commerce.
(11) 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.
SEC. 3. DEFINITIONS.
For purposes of this Act:
(1) Anatomical gift.--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.
(2) Auxiliary aids and services.--The term ``auxiliary aids
and services'' includes--
(A) qualified interpreters or other effective
methods of making aurally delivered materials available
to individuals with hearing impairments;
(B) qualified readers, taped texts, or other
effective methods of making visually delivered
materials available to individuals with visual
impairments;
(C) provision of information in a format that is
accessible for individuals with cognitive,
neurological, developmental, or intellectual
disabilities;
(D) provision of supported decision-making
services; and
(E) acquisition or modification of equipment or
devices.
(3) Covered entity.--The term ``covered entity'' means--
(A) 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
(B) any entity responsible for matching anatomical
gift donors to potential recipients.
(4) Disability.--The term ``disability'' has the same
meaning give such term in section 4 of the Americans with
Disabilities Act of 1990.
(5) Organ transplant.--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.
(6) Qualified individual.--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.
(7) Reasonable modifications to policies or practices.--The
term ``reasonable modifications to policies or practices''
include--
(A) communication with individuals responsible for
supporting an individual with postsurgical and post-
transplantation care, including medication; and
(B) 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.
(8) Secretary.--The term ``Secretary'' means the Secretary
of Health and Human Services.
(9) 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--
(A) 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;
(B) 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;
(C) providing auxiliary aids and services to
facilitate the individual's ability to communicate and
process health-related information, including use of
assistive communication technology;
(D) 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;
(E) providing health information in a format that
is readily understandable by the individual; and
(F) 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.
(10) Support network.--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.
SEC. 4. PROHIBITION OF DISCRIMINATION.
(a) In General.--Subject to subsection (b), a covered entity may
not, solely on the basis of a qualified individual's mental or physical
disability--
(1) deem such individual ineligible to receive an
anatomical gift or organ transplant;
(2) deny such individual medical or related organ
transplantation services, including evaluation, surgery,
counseling, and postoperative treatment and care;
(3) refuse to refer the individual to a transplant center
or other related specialist for the purpose of evaluation or
receipt of an organ transplant;
(4) 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
(5) 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.
(b) Exception.--
(1) In general.--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.
(2) Clarification.--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).
(c) Reasonable Modifications.--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.
(d) Clarifications.--
(1) 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.
(2) 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.
(3) The provisions of this section apply to each part of
the organ transplant process.
SEC. 5. ENFORCEMENT.
(a) In General.--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--
(1) may bring such a claim to the Office for Civil Rights
of the Department of Health and Human Services for expedited
resolution; and
(2) 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.
(b) Relief Available.--The injunctive and equitable relief
available in a civil action brought under subsection (a)(2), with
respect to a covered entity, includes--
(1) requiring auxiliary aids or services to be made
available by such entity;
(2) requiring the modification of a policy, practice, or
procedure of such entity; or
(3) requiring facilities of such entity be made readily
accessible and usable.
(c) Expedited Review.--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.
(d) 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.
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