[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.

                          ____________________