[Pages H2858-H2860]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

CHARLOTTE WOODWARD ORGAN TRANSPLANT DISCRIMINATION PREVENTION ACT

Mr. BILIRAKIS. Mr. Speaker, I move to suspend the rules and pass the
bill (H.R. 1520) to prohibit discrimination on the basis of mental or
physical disability in cases of organ transplants.
The Clerk read the title of the bill.
The text of the bill is as follows:

H.R. 1520

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. DEFINITIONS.

In this Act:
(1) Auxiliary aids and services.--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).
(2) Covered entity.--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--
(A) is in interstate commerce; or
(B) provides health care services in a manner that--
(i) substantially affects or has a substantial relation to
interstate commerce; or
(ii) includes use of an instrument (including an instrument
of transportation or communication) of interstate commerce.
(3) Disability.--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).
(4) Human organ.--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)).
(5) Organ transplant.--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.
(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 a human organ.
(7) Reasonable modifications to policies or practices.--The
term ``reasonable modifications to policies or practices''
includes--
(A) 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;
(B) 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
(C) the use of supported decision-making, when needed, by a
qualified individual.
(8) Related services.--The term ``related services'' means
services related to an organ transplant that consist of--
(A) evaluation;
(B) counseling;
(C) treatment, including postoperative treatment, and care;
(D) provision of information; and
(E) any other service recommended or required by a
physician.
(9) Supported decision-making.--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--
(A) 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;
(B) 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;
(C) 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;
(D) 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;
(E) providing health information in a format that is
readily understandable by the individual; and
(F) 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.
(10) Support network.--The term ``support network'' means,
with respect to a qualified individual, 1 or more people who
are--
(A) 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
(B) 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.

SEC. 3. PROHIBITION OF DISCRIMINATORY POLICY.

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.

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 disability--
(1) determine that the individual is ineligible to receive
an organ transplant or related services;
(2) deny the individual an organ transplant or related
services;
(3) 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
(4) refuse to place the individual on an organ transplant
waiting list.
(b) Exception.--
(1) In general.--
(A) Medically significant disabilities.--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.
(B) Construction.--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.
(2) Clarification.--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).
(c) Reasonable Modifications.--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.
(d) Clarifications.--
(1) No denial of services because of absence of auxiliary
aids and services.--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.
(2) Compliance with other law.--Nothing in this section
shall be construed--
(A) to prevent a covered entity from providing organ
transplants or related services

[[Page H2859]]

at a level that is greater than the level that is required by
this section; or
(B) 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, 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.
(e) Enforcement.--
(1) In general.--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.
(2) Rule of construction.--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.

SEC. 5. APPLICATION TO EACH PART OF PROCESS.

The provisions of this Act--
(1) 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
(2) that apply to related services, also apply to the
process for receipt of related services by such an
individual.

SEC. 6. EFFECT ON OTHER LAWS.

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.

The SPEAKER pro tempore. Pursuant to the rule, the gentleman from
Florida (Mr. Bilirakis) and the gentleman from New Jersey (Mr. Pallone)
each will control 20 minutes.
The Chair recognizes the gentleman from Florida.

General Leave

Mr. BILIRAKIS. Mr. Speaker, I ask unanimous consent that all Members
have 5 legislative days in which to revise and extend their remarks and
include extraneous material in the Record on this particular bill.
The SPEAKER pro tempore. Is there objection to the request of the
gentleman from Florida?
There was no objection.
Mr. BILIRAKIS. Mr. Speaker, I yield myself such time as I may
consume.
Mr. Speaker, I rise today in strong support of H.R. 1520, the
Charlotte Woodward Organ Transplant Discrimination Prevention Act led
by my good friend Mrs. Cammack. She is on a roll.
This legislation prohibits healthcare providers and other entities
from denying an individual's access to organ transplants based solely
on the basis of an individual's disability.
According to the National Council on Disability, such denials are
usually based on assumptions regarding the patient's quality of life
and misinterpretations surrounding the ability for these individuals to
comply with postoperative care.
Though existing Federal laws prohibit organ transplant centers from
discriminating on the basis of disability, there is limited enforcement
and a lack of Federal guidance to ensure patients are protected.
No one should be denied access to an organ transplant just because
they have a disability. H.R. 1520 clarifies that individuals with
disabilities shall not be denied an organ transplant or related
services based solely on the individual's disability and includes an
expedited review and enforcement mechanism through the Department of
Health and Human Services' Office of Civil Rights.
This is a must-pass bill. We must protect individuals, our
constituents, and in some cases family members, with disabilities. They
should not be discriminated against.
Mr. Speaker, I urge my colleagues to join me in voting in favor of
H.R. 1520, and I reserve the balance of my time.
Mr. PALLONE. Mr. Speaker, I yield myself such time as I may consume.
Mr. Speaker, I rise in support of H.R. 1520, the Charlotte Woodward
Organ Transplant Discrimination Prevention Act.
This bill prohibits people who are eligible for a lifesaving organ
transplant from being denied the transplant based solely on their
disability status.
Existing Federal laws, including the Americans with Disabilities Act,
the Rehabilitation Act, and the Affordable Care Act, already prohibit
organ transplant centers from discriminating based solely on
disability. However, there are still cases where people with
disabilities have been denied access to organ transplants. This is
often because of misperceptions about how a disability impacts the
medical likelihood of transplant success or unfounded assumptions
regarding people with disabilities' ability to comply with
postoperative care.
This bill prohibits covered entities from determining that an
individual is ineligible to receive a transplant based solely on the
fact that the individual has a disability.
The legislation also acknowledges the importance of support networks
and services in helping with postoperative care.
Organ transplants, Mr. Speaker, as you know, save lives, and it is
important that the system is free from discrimination.
I am pleased that we are taking this step to clarify and build upon
existing civil rights protections for people with disabilities.
However, I am concerned that ongoing cuts at the Department of Health
and Human Services will limit the effectiveness of this bill.
H.R. 1520 instructs the Office of Civil Rights to enforce the
discrimination protections included in the bill. However, the Trump
administration is not only proposing to eliminate the Office of Civil
Rights as an independent agency, but it has fired some of the office's
staff. The final number of staff who have or will be eliminated is
unclear because the Department has refused to be transparent with
Congress on the number of employees who have been terminated.
The Office of Civil Rights is already understaffed and underfunded,
which has created a backlog of cases. If my Republican colleagues truly
care about the proper implementation of this bill, they will join me in
conducting oversight of the Trump administration's rampant cuts at HHS
and the Office of Civil Rights.
I thank Representative Dingell and also Representative Cammack for
their work on this bill. It is very important legislation, and I
encourage all of my colleagues to vote ``yes'' on H.R. 1520.
Mr. Speaker, I reserve the balance of my time.
Mr. BILIRAKIS. Mr. Speaker, I yield such time as she may consume to
the gentlewoman from Florida (Mrs. Cammack).

{time} 1530

Mrs. CAMMACK. Mr. Speaker, I thank the chairman for his leadership.
Mr. Speaker, I rise today in strong support of H.R. 1520, the
Charlotte Woodward Organ Transplant Discrimination Prevention Act.
This legislation is deeply personal for many families across the
United States who have experienced unimaginable pain and loss simply
because their loved ones had a disability.
One of those families is from my district in Ocala, Florida, Bobbi
and Josh Sarmiento. Their infant son, baby Zion, was born with Down
syndrome and in need of a heart transplant. At just 6 months old, Zion
was denied that chance.
The doctors told the parents, Bobbi and Josh, that baby Zion's life
wasn't worth the heart, that it couldn't ``be wasted'' on a child with
a disability.
That is not just wrong, but it is inhumane. It should never ever
happen again.
This bill that we are considering here today is named after Charlotte
Woodward, a remarkable woman with Down syndrome who received a
lifesaving heart transplant over a decade ago.
Charlotte's story is a living, breathing testament to the truth that
we must affirm here today: Every life, regardless of disability, has
value and potential.
I am so pleased to announce that Charlotte is with us here today in
the gallery. I recognize you, Charlotte, and thank you for all that you
do.
Mr. Speaker, H.R. 1520 ensures that individuals with disabilities are
not discriminated against in organ transplant eligibility. It gives
families a mechanism for timely intervention, time that oftentimes
families just don't have, through the Department of Health and Human
Services, when medical decisions are clouded by bias rather than
compassion and science.
I am proud to work once again with my colleague and friend
Congresswoman Debbie Dingell in advancing this bipartisan effort. This
bill passed overwhelmingly in the last Congress,

[[Page H2860]]

and I am confident that this body will do what is right once again.
Mr. Speaker, I urge my colleagues to support this bill and fight for
life.
The SPEAKER pro tempore. The Chair reminds Members that the rules do
not allow references to persons in the gallery.
Mr. PALLONE. Mr. Speaker, I yield such time as she may consume to the
gentlewoman from Michigan (Mrs. Dingell), a member of our committee.
Mrs. DINGELL. Mr. Speaker, I rise today to share my strong support
for H.R. 1520, the Charlotte Woodward Organ Transplant Discrimination
Prevention Act.
Mr. Speaker, as co-chair of the Bipartisan Disabilities Caucus, I am
proud to co-lead the Charlotte Woodward Organ Transplant Discrimination
Prevention Act alongside my colleague, Representative Kat Cammack. I
thank her for her partnership on this vital bill named after the
incredible young woman whom you just met.
I came out here looking for her because I said to Frank months or
years ago: Frank, she will be in the committee. She is the living
energy of somebody who knew that something had to be done, and
Charlotte is just always there. Her energy is going to get this issue
righted. She has been the bill's biggest supporter, sitting time and
time again in the Energy and Commerce Committee room for nearly every
hearing and markup and telling her story and her tremendous work.
For those who don't know her story, it has been mentioned that
Charlotte was born with Down syndrome and a heart condition. Due to
this heart condition, she successfully underwent a lifesaving heart
transplant in 2012. In the years since, she has become the advocate we
all know, sharing her story to educate and advocate for others with
disabilities.
In her honor, this important bill prohibits discrimination against
people with disabilities in the organ transplant system. Specifically,
it prohibits eligible individuals from being denied a lifesaving
transplant procedure based solely on their disability status. It is
unthinkable that people with disabilities are passed over for
lifesaving transplants based on discriminatory and subjective
assumptions about their ability to comply with postoperative care.
With this legislation, we can take action and ensure that all
Americans, regardless of their disability status, receive equitable
access to the care that they need.
I thank Energy and Commerce Committee Chair Guthrie and Ranking
Member Pallone for fighting with us for this important piece of
legislation. Again, I thank Representative Cammack for being such a
great bipartisan partner.
Mr. Speaker, I urge all of my colleagues to support this important
bill.
Mr. BILIRAKIS. Mr. Speaker, I yield such time as he may consume to
the gentleman from Georgia (Mr. Carter), the chairman of the Health
Subcommittee under the Energy and Commerce Committee.
Mr. CARTER of Georgia. Mr. Speaker, I thank the gentleman for
yielding.
Mr. Speaker, I rise today in strong support of the Charlotte Woodward
Organ Transplant Discrimination Prevention Act, which prohibits
discrimination against people with disabilities in the organ transplant
system.
This bill prohibits covered entities from determining that an
individual is ineligible to receive a transplant or denying a
transplant based solely on the fact that the individual has a
disability.
The bill is named after Charlotte Woodward, an advocate with Down
syndrome who received a lifesaving heart transplant a decade ago. Since
then, she has advocated tirelessly to ensure that others living with
Down syndrome and other disabilities have the same access to lifesaving
care that she did.
Unfortunately, there have been too many instances in which
individuals with disabilities have been denied a lifesaving organ
transplant, and this is unacceptable.
Congress has the opportunity to help ensure that individuals with
disabilities are treated fairly within the organ transplant system. No
one, Mr. Speaker--no one--should be denied access to an organ
transplant just because they have a disability.

That is why I am proud to support this bill, which will make sure
that all Americans, no matter their disability status, will be able to
receive the access to care that they need and deserve.
Mr. Speaker, I thank my good friends, Representative Cammack and
Representative Dingell, for their leadership on this important issue,
and I urge my colleagues to support this legislation.
Mr. PALLONE. Mr. Speaker, I yield myself such time as I may consume.
Mr. Speaker, while I support this underlying legislation--and it is
important legislation--I have to say that it is disappointing to see
that my Republican colleagues are proceeding with this bill without a
CBO score. They are violating their own protocol, which requires a CBO
score before bringing a bill to the floor.
Over the past 3 years, there have been countless times that
Democratic bills have been denied floor consideration because they
included an increased authorization line, which is against the majority
leader's floor protocol.
It is entirely inconsistent for Republicans to deny floor
consideration for an increased authorization line that has no score but
then bring a bill to the floor that could have a mandatory score.
It is the majority's responsibility to request and obtain CBO scores
for bills they are planning to move. The Republicans are changing the
rules as they please. I am, of course, concerned about this from a
process perspective, and I encourage my Republican colleagues to follow
their own rules.
Mr. Speaker, I reserve the balance of my time.
Mr. BILIRAKIS. Mr. Speaker, I yield myself the balance of my time to
close.
Mr. Speaker, there is no cost. There is no cost to this particular
bill, and it is necessary.
Mr. Speaker, the bottom line is that you cannot put a price on the
value of life. As a matter of fact, no one should determine a person's
quality of life, as far as I am concerned.
God bless Charlotte for advocating on behalf of this bill and, of
course, my good friends Mrs. Cammack and Mrs. Dingell. We have to get
this done. Time is of the essence.
Mr. Speaker, it is a responsible thing to do, and I yield back the
balance of my time.
Mr. PALLONE. Mr. Speaker, let me associate myself with the remarks
that the chairman made. This is an important bill. I urge all of my
colleagues to support it, and I yield back the balance of my time.
The SPEAKER pro tempore. The question is on the motion offered by the
gentleman from Florida (Mr. Bilirakis) that the House suspend the rules
and pass the bill, H.R. 1520.
The question was taken; and (two-thirds being in the affirmative) the
rules were suspended and the bill was passed.
A motion to reconsider was laid on the table.

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