[Congressional Record Volume 170, Number 148 (Monday, September 23, 2024)]
[House]
[Pages H5580-H5582]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
CHARLOTTE WOODWARD ORGAN TRANSPLANT DISCRIMINATION PREVENTION ACT
Mr. BUCSHON. Mr. Speaker, I move to suspend the rules and pass the
bill (H.R. 2706) to prohibit discrimination on the basis of mental or
physical disability in cases of organ transplants, as amended.
The Clerk read the title of the bill.
The text of the bill is as follows:
H.R. 2706
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, one 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.
[[Page H5581]]
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 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
Indiana (Mr. Bucshon) and the gentleman from New Jersey (Mr. Pallone)
each will control 20 minutes.
The Chair recognizes the gentleman from Indiana.
General Leave
Mr. BUCSHON. Mr. Speaker, I ask unanimous consent that all Members
may have 5 legislative days in which to revise and extend their remarks
and include extraneous material in the Record on the bill.
The SPEAKER pro tempore. Is there objection to the request of the
gentleman from Indiana?
There was no objection.
Mr. BUCSHON. Mr. Speaker, I yield myself such time as I may consume.
Mr. Speaker, I rise in support of H.R. 2760, the Charlotte Woodward
Organ Transplant Discrimination Prevention Act, led by Representative
Cammack.
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.
H.R. 2706 will clarify that organ transplant discrimination on the
basis of disability is prohibited and require the HHS Office of Civil
Rights to review these claims in an expedited manner to ensure a timely
resolution.
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 individuals with
disabilities are treated fairly within the organ transplant system.
No one should be denied access to an organ transplant just because
they have a disability.
Mr. Speaker, I encourage my colleagues to support this bill, and I
reserve the balance of my time.
{time} 1530
Mr. PALLONE. Mr. Speaker, I yield myself such time as I may consume.
Mr. Speaker, I rise in support of H.R. 2706, the Charlotte Woodward
Organ Transplant Discrimination Prevention Act.
Mr. Speaker, this bill prohibits eligible individuals from being
denied a lifesaving organ 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 disabled persons'
abilities 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. It also acknowledges the
importance of support networks and services and helping with
postoperative care.
Mr. Speaker, organ transplants can save lives, and it is important
that the system be free from discrimination. I am glad that we are
taking this step to clarify and build upon existing civil rights
protections for people with disabilities. I thank our colleagues on the
Energy and Commerce Committee, Mrs. Cammack and Representative Dingell,
as well, for their bipartisan work on this bill.
Mr. Speaker, I encourage all my colleagues to vote ``yes'' on H.R.
2706, and I reserve the balance of my time.
Mr. BUCSHON. Mr. Speaker, I yield 5 minutes to the gentlewoman from
Florida (Mrs. Cammack).
Mrs. CAMMACK. Mr. Speaker, I thank my colleague, Representative
Bucshon, for yielding me time.
Mr. Speaker, it is an honor to stand here today and debate H.R. 2706,
the Charlotte Woodward Organ Transplant Discrimination Prevention Act.
Of course, I don't think there is a whole lot of debate that is going
to happen here today because I hope it will be unanimous.
For Members who don't know, this bill is named after Charlotte
Woodward, an adult woman with Down syndrome who received a lifesaving
heart transplant over 12 years ago.
Sadly, as has been mentioned, not all individuals with disabilities
have that same opportunity. That is why we are here to consider this
bill today, to ensure that all Americans, regardless of the disability
they may have, have the same opportunity to receive a lifesaving organ
transplant.
When I first learned of this issue, I could not believe that this
practice was happening here in our country. However, after learning
more about the issue and hearing stories from advocates, including
Charlotte herself, they were advocating for change. I was shocked and
horrified to learn that
[[Page H5582]]
there were no protections for these individuals.
According to a 2019 report from the National Council on Disability,
which is the agency that advises the legislative and executive branch
on disability policy issues, people with disabilities have been
routinely denied due to subjective judgments about the value of a human
who happens to have a disability, subjective assumptions about their
quality of life, and misconceptions about their ability to comply with
postoperative care.
Even more, that same report found that some organ transplant programs
have policies that exclude, rather than include, people with
disabilities as candidates for transplant.
In 2021, as a freshman Member of Congress, I met Bobbi and Josh
Sarmiento. They are from Ocala, Florida, in my district. These
constituents reached out and wanted to share the story of their son,
baby Zion. I spent time learning about their journey and couldn't help
being moved to action as I left them that day.
I couldn't possibly do justice in recounting their story. Instead, I
will read an excerpt from baby Zion's mom, Bobbi, in her own words,
their story and experience with the organ transplant system that she
provided to a congressional panel just last year.
In Bobbi's words, she said:
We learned at 10 weeks gestation that our son, Zion, had
Down syndrome, and at his 20-week anatomy scan, he had a
heart defect called a complete AVSD, or also called a
complete AV canal defect. Simply put, we have four chambers
in our heart. Zion had a large hole in the center separating
those chambers from forming. This is a common heart defect
those with Down syndrome have.
Our beautiful boy was born on June 15, 2021. We spent 40
days in the NICU before being discharged to go home. We have
some of the best memories of our time at home before his
open-heart surgery was scheduled for September of 2021. We
did all the research and asked all the questions. We never
knew we would end up being the worst-case scenario.
To make a long story short, Zion had 5 open-heart surgeries
in a matter of 12 days. He was such a warrior through each
one. After the fifth surgery didn't work as planned, we were
told that he would need a heart transplant. The hospital we
were at did not do transplants, so we were left with three
options in Florida. To qualify, we were told his other organs
had to be working, which they were, and we have the autopsy
to prove this.
Our first option told us that they had never done a
successful heart transplant on someone with Down syndrome. I
asked how many they had tried. No response. Through my own
research and digging that moms do to get answers, I have
since learned that the answer was zero. Our second option
said that they didn't feel their team could do a successful
heart transplant for Zion, and the third option kept us
waiting.
Finally, they came back and said that, because baby Zion
was on ECMO life support three times through the five
surgeries, he couldn't have brain activity. I would like to
note that Zion came off ECMO after the second and fifth
surgery, which we knew upfront was vital to being accepted
for the heart transplant list. They wanted a brain
activity test run and sent to them for their final
decision. We were told before it was sent that the test
was perfect.
With nothing to disqualify him, we thought that we would be
on our way to the next step. They came back and told us that
after much deliberation, they concluded that they just
couldn't waste a heart.
Wow, that is hard to read.
Our son was worth the same chance at life as anyone else.
With no options left, we had to make the decision to remove
the machines. On October 8, 2021, our son left our arms and
ran into the arms of Jesus.
The SPEAKER pro tempore. The time of the gentlewoman has expired.
Mr. BUCSHON. Mr. Speaker, I yield such time as she may consume to the
gentlewoman from Florida.
Mrs. CAMMACK. Baby Zion deserved the same chance at life as any other
American, but he was denied a heart transplant by the same doctors
because he had Down syndrome, and they ``couldn't waste a heart.''
The tragic story of baby Zion and the courage of his parents, Josh
and Bobbi, along with the drive of so many incredible advocates, have
led us today to H.R. 2706, the Charlotte Woodward Organ Transplant
Discrimination Prevention Act, which would prohibit healthcare
providers and other entities from denying or restricting an
individual's access to organ transplants solely based on an
individual's disability.
The bill would require expedited review of discrimination claims at
the Office for Civil Rights at the Department of Health and Human
Services. No family should have to wait or be denied.
I thank Charlotte Woodward, Bobbi and Josh, and all of the advocates
who have worked so hard to get this bill where it is today. We would
not be here without your tireless work to educate and advocate on
behalf of individuals with disabilities across the country.
I also want to thank my colleague, Debbie Dingell, for her
partnership and work on this bill. It was truly an honor to work with
the gentlewoman on important issues like this.
I also acknowledge my Senate counterpart, Senator Rubio, for
championing this issue in the Senate.
Lastly, I thank Chair Cathy McMorris Rodgers for her work and support
on this issue. Her leadership in Energy and Commerce on this issue and
the multitude of important issues that we deal with in the committee
cannot be overstated. Not only is the gentlewoman a trailblazer and an
ability advocate, but a force of nature.
Mr. Speaker, I urge my colleagues to support this bill.
Mr. BUCSHON. Mr. Speaker, I have no further speakers, and I am
prepared to close. I reserve the balance of my time.
Mr. PALLONE. Mr. Speaker, in closing, I think Mrs. Cammack explained
very well why we need to pass this bill, and I would ask all of my
colleagues to support it.
Mr. Speaker, I yield back the balance of my time.
Mr. BUCSHON. Mr. Speaker, in closing, I encourage a ``yes'' vote on
this bill, and I yield back the balance of my time.
The SPEAKER pro tempore. The question is on the motion offered by the
gentleman from Indiana (Mr. Bucshon) that the House suspend the rules
and pass the bill, H.R. 2706, as amended.
The question was taken; and (two-thirds being in the affirmative) the
rules were suspended and the bill, as amended, was passed.
A motion to reconsider was laid on the table.
____________________