Organ Transplant 

Discrimination Against 

People with Disabilities

Part of the Bioethics and 

Disability Series

National Council on Disability

September 25, 2019
National Council on Disability (NCD)

1331 F Street NW, Suite 850

Washington, DC 20004

Organ Transplant Discrimination Against People with Disabilities: Part of the Bioethics and 

Disability Series

National Council on Disability, September 25, 2019

This report is also available in alternative formats. Please visit the National Council on Disability (NCD) 

website (www.ncd.gov) or contact NCD to request an alternative format using the following information:

ncd@ncd.gov Email

202-272-2004 Voice

202-272-2022 Fax

The views contained in this report do not necessarily represent those of the Administration, as this and 

all NCD documents are not subject to the A-19 Executive Branch review process.
National Council on Disability

An independent federal agency making recommendations to the President and Congress 

to enhance the quality of life for all Americans with disabilities and their families.

Letter of Transmittal

September 25, 2019

The President

The White House

Washington, DC 20500

Dear Mr. President,

On behalf of the National Council on Disability (NCD), I am pleased to submit Organ Transplants and 

Discrimination Against People with Disabilities, part of a five-report series on the intersection of 

disability and bioethics. This report, and the others in the series, focuses on how the historical and 

continued devaluation of the lives of people with disabilities by the medical community, legislators, 

researchers, and even health economists, perpetuates unequal access to medical care, including lifesaving care.

Organ transplants save lives. But for far too long, people with disabilities have been denied organ 

transplants as a result of unfounded assumptions about their quality of life and misconceptions about 

their ability to comply with post-operative care. Although the Americans with Disabilities Act (ADA) 

and Section 504 of the Rehabilitation Act of 1973 (Section 504) prohibit discrimination on the basis of 

disability, organ transplant centers and medical professionals are often unaware that this prohibition 

applies to the organ transplant process. 

NCD examined applicable federal and state laws, the disability-related policies of various organ 

transplant centers, and policies of the Organ Procurement and Transplantation Network (OPTN). 

Among other things, NCD found that discrimination continues to occur in the nine states that have 

enacted laws explicitly prohibiting such discrimination; that disabilities unrelated to a person’s need 

for an organ transplant generally have little or no impact on the likelihood that the transplant will be 

successful; and that many organ transplant centers have policies that bar or caution against placing 

people with HIV, psychiatric disabilities, or intellectual and developmental disabilities (I/DD) on the 

waiting list to receive an organ transplant.

The lives of people with disabilities are equally valuable to those without disabilities, and healthcare 

decisions based on devaluing the lives of people with disabilities are discriminatory. Organ Transplants 

and Discrimination Against People with Disabilities provides an overview of the ways in which people 

with disabilities are discriminated against in the organ transplant process, an analysis of the protections 

provided, and the reasons underlying continued discrimination. The report describes why additional 

steps must be taken at the federal and state levels to clarify the law and educate organ transplant 

centers, physicians, and other medical professionals in order to prevent discrimination against people 

with disabilities. It concludes by outlining recommendations that can remedy such discrimination.

1331 F Street, NW ■ Suite 850 ■ Washington, DC 20004

202-272-2004 Voice ■ 202-272-2074 TTY ■ 202-272-2022 Fax ■ www.ncd.gov
NCD stands ready to assist the Administration, Congress and federal agencies to ensure that people 

with disabilities do not face discrimination in accessing life-saving organ transplants.

Respectfully,

Neil Romano

Chairman

(The same letter of transmittal was sent to the President Pro Tempore of the U.S. Senate and the Speaker of the 

U.S. House of Representatives.)

2 National Council on Disability
National Council on Disability Members and Staff

Members

Neil Romano, Chairman

Benro Ogunyipe, Vice Chairperson

Billy Altom

Rabia Belt

James Brett

Daniel Gade

Andrés Gallegos

Wendy S. Harbour

Clyde Terry

Staff

Phoebe Ball, Legislative Affairs Specialist

Stacey S. Brown, Staff Assistant

Joan M. Durocher, General Counsel & Director of Policy

Lisa Grubb, Executive Director

Netterie Lewis, Administrative Support Specialist

Amy Nicholas, Attorney Advisor

Nicholas Sabula, Public Affairs Specialist

Amged Soliman, Attorney Advisor

Anne Sommers, Director of Legislative Affairs & Outreach

Ana Torres-Davis, Attorney Advisor

Keith Woods, Financial Management Analyst

Organ Transplants and Discrimination Against People with Disabilities 3
4 National Council on Disability
Contents

Acknowledgments . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  

Executive Summary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11

Purpose . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11

Background . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11

Key Findings . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  1

Key Recommendations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14

The Department of Justice (DOJ), in conjunction with 

the Department of Health and Human Services (HHS) . . . . . . . . . . . 14

UNOS/OPTN . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  1

State Legislatures . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  1

Acronym Glossary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  1

Glossary . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  2

How Does the Report Define “Disability”? . . . . . . . . . . . . . . . . . . . . . . . . .  2

Summary of Methodology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  2

Qualitative Data . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  2

Quantitative Data . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  2

Literature Review . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  2

Limitations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  2

Chapter 1: The Organ Transplantation Process 

and Discrimination on the Basis of Disability . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  2

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  2

A Brief Overview of the Organ Transplant Process . . . . . . . . . . . . . . . . . .  2

How Many Organ Transplant Centers Are There? . . . . . . . . . . . . . . . . . . .  2

Disability Discrimination by Physicians . . . . . . . . . . . . . . . . . . . . . . . . . . .  2

Organ Transplants and Discrimination Against People with Disabilities 5
Disability Discrimination by Organ Transplant Centers . . . . . . . . . . . . . . .  2

Refusal to Evaluate a Person with a Disability as a Candidate . . . . . .  3

Disability Discrimination During the Evaluation . . . . . . . . . . . . . . . . .  3

Organ Procurement Policies and Practices, and Their Effect 

on People with Disabilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  3

Chapter 2: Ethical and Medical Perspectives on Organ Transplants 

for People with Disabilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  3

Medical Perspectives on Organ Transplants 

for People with Disabilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  3

Medical Practitioners and Transplants 

for People with Disabilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  3

Medical Success of Organ Transplants 

for People with Disabilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  3

People with Intellectual and Developmental 

Disabilities (I/DD) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  3

People with Psychiatric Disabilities . . . . . . . . . . . . . . . . . . . . . . . .  3

Patients Who Are HIV-Positive . . . . . . . . . . . . . . . . . . . . . . . . . . . .  4

Post-Operative Care for People with Disabilities 

Receiving Organ Transplants . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  4

Ethical Issues and Bioethicist Perspectives on 

Organ Transplants for People with Disabilities . . . . . . . . . . . . . . . . . . . .  4

Ethical Question 1: “What is the proper relationship 

between disability and the allocation of organs?” . . . . . . . . . . . . . .  4

Ethical Question 2: “Is there a means of allocating scarce 

healthcare resources, such as organs, that does not 

discriminate against people with disabilities?” . . . . . . . . . . . . . . . .  4

Existing Medical and Ethical Guidelines for Organ Transplants . . . . . . . .  4

Chapter 3: Federal Laws, Regulations, and Guidance and Their Impact 

on Organ Transplants for People with Disabilities . . . . . . . . . . . . . . . . . . . . . . . . . . . .  4

The Americans with Disabilities Act . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  4

Section 504 of the Rehabilitation Act of 1973 . . . . . . . . . . . . . . . . . . . . . . .  4

Section 1557 of the Patient Protection and Affordable Care Act . . . . . . . .  4

HHS’s UNOS Guidelines . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  4

6 National Council on Disability
Case Law and Guidance Regarding Organ Transplantation 

and Federal Law . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  4

Do Organ Transplant Centers Follow Federal Law? . . . . . . . . . . . . . . . . . .  5

Chapter 4: State Laws Prohibiting Discrimination Against People 

with Disabilities in Organ Transplants . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  5

A Brief Overview of State Laws . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  5

California’s Organ Transplant Nondiscrimination Law . . . . . . . . . . . . . . .  5

Maryland’s Organ Transplant Nondiscrimination Law . . . . . . . . . . . . . . .  6

Chapter 5: Case Study: Lief and Paul . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  6

Beginnings . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  6

Disregard . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  6

Transplantation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  6

Aftermath . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  6

Chapter 6: Recommendations . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  6

Preface . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  6

Federal Guidance and Policy Reform . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  6

State Legislation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  6

Organ Procurement Policy Reform . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  6

Appendix . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  7

Endnotes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  7

Organ Transplants and Discrimination Against People with Disabilities 7
8 National Council on Disability
Acknowledgments

This report is part of a series of reports on bioethics and people with disabilities which was developed 

through a cooperative agreement with the Disability Rights Education & Defense Fund (DREDF). The 

National Council on Disability (NCD) appreciates the work of those who contributed their expertise in 

its development, including Julia Bascom, Executive Director, Autistic Self Advocacy Network (ASAN); 

Samantha Crane, Legal Director and Director of Public Policy, ASAN; Kelly Israel, Policy Analyst, ASAN; 

Maura Klugman, Senior Staff Attorney, Judge David L. Bazelon Center for Mental Health Law (Bazelon); 

Jennifer Mathis, Director of Policy and Legal Advocacy, Bazelon; and Erin Shea, Policy and Legal 

Advocacy Fellow, Bazelon. NCD also appreciates the work of Marilyn Golden, Senior Policy Analyst, 

DREDF, who shepherded the entire report series in cooperation with NCD. We also thank those who 

participated on the Advisory Panel, in interviews, and in the stakeholder convening, whose knowledge 

and willingness to share information helped make this series possible.

Organ Transplants and Discrimination Against People with Disabilities 9
10 National Council on Disability
Executive Summary

Purpose

People with disabilities are often denied 

equal access to organ transplants 

solely on the basis of their disability. 

These denials are frequently based on 

discriminatory assumptions that the lives of 

people with disabilities are of poorer quality 

than those of people without disabilities, and on 

misperceptions about the ability of people with 

disabilities to comply with postoperative care.

Despite the existence 

of studies debunking 

those misconceptions 

and the harrowing 

experiences of people 

with disabilities and their 

families, there are few 

resources that provide 

a nationwide overview of the problem and offer 

practical recommendations to federal and state 

policymakers. Similarly, despite the fact that 

discrimination against people with disabilities in 

the organ transplant process is barred by federal 

law and the laws of nine states, this type of 

discrimination has not been formally litigated. 

This report will examine these issues and provide 

policy recommendations.

Background

Donated organs in the United States are 

distributed via a federally run, national system 

rather than a private market because the National 

Organ Transplant Act of 1984 (NOTA) prohibits 

the buying and selling of organs.

The federally run system is called the Organ 

Procurement and Transplantation Network 

(OPTN), and it is run by the United Network for 

Organ Sharing (UNOS). NOTA established the 

OPTN, which is overseen 

by the Department 

of Health and Human 

Services (HHS). UNOS 

has run OPTN as the 

sole contractor since 

1986. UNOS and 

OPTN are treated as 

synonymous and the two acronyms are often 

used interchangeably in this report.

There are six types of organs that can be 

donated through this system: the heart, lungs, 

kidneys, liver, pancreas, and intestine. UNOS/

OPTN runs a national waiting list and creates the 

medical and geographic criteria that determine 

how the organs are matched with recipients. 

UNOS/OPTN also supervises two types of 

UNOS/OPTN runs a national waiting 

list and creates the medical and 

geographic criteria that determine 

how the organs are matched with 

recipients

Organ Transplants and Discrimination Against People with Disabilities 11
organizations with significant influence over the 

organ transplantation process: organ transplant 

centers/hospitals and organ procurement 

organizations (OPOs).

Organ transplant centers and hospitals include 

transplant coordinators and other personnel 

who work with the patient and the patient’s 

family, as well as the transplant surgeons who 

actually transplant the organ. These transplant 

centers themselves 

decide whether to accept 

patients as candidates for 

transplant and whether 

to place patients on 

the national waiting 

list. To do so, organ 

transplant centers must 

first evaluate potential 

patients to determine whether, in their view, an 

organ should be transplanted into that patient. 

Each organ transplant center has its own policies 

and practices governing how it decides which 

patients to accept and submit to the national 

waiting list.

Some of 

these policies list 

contraindications, which 

are facts about the 

patient and the patient’s 

health that make it less 

likely that the patient will be accepted by the 

organ transplant center. There are “absolute 

contraindications,” meaning the organ transplant 

center will never accept a patient with this 

characteristic, and “relative contraindications,” 

meaning the organ transplant center is less 

likely to accept a patient with this characteristic. 

While UNOS/OPTN does not explicitly consider 

disability to be a contraindication to organ 

transplant, some doctors and organ transplant 

centers still consider disability, and particularly 

mental health disabilities, to be either a relative 

or absolute contraindication to organ transplant, 

often despite evidence to the contrary.

Once a transplant center has agreed to 

transplant an organ into the patient, the patient is 

added to a national waiting list, which is managed 

by UNOS/OPTN. UNOS/OPTN has its own 

specific policies for each 

organ that determine the 

priority level of patients 

on the waiting list. These 

policies typically prioritize 

the sickest patients first 

and do not specifically 

reference disability other 

than when a disability led 

to the need for the transplant.

OPOs attempt to recruit new organ donors 

and provide donors with information and support. 

They also coordinate the organ donation process, 

ensuring that the organ is safely removed 

and transported to its 

recipient.

Once an organ has 

been transplanted, the 

patient must adhere to a 

strict post-operative care 

regimen for the rest of 

the patient’s life. Postoperative care regimens 

may involve taking multiple medications at 

specific times each day, follow-ups with the 

transplant center, lifestyle changes, and the 

management of medication side effects or 

co-occurring conditions that are more common 

in organ transplant recipients. The assumption 

that people with disabilities will not be able to 

comply with postoperative care has caused 

Each organ transplant center has 

its own policies and practices 

governing how it decides which 

patients to accept and submit to the 

national waiting list

UNOS/OPTN has its own specific 

policies for each organ that 

determine the priority level of 

patients on the waiting list

12 National Council on Disability
disability to be considered a contraindication 

to organ transplant at many transplant centers 

despite the fact that people with disabilities, 

when provided with necessary supports, are 

no less likely to comply than people without 

disabilities.

Key Findings

■ If a person has a disability that is unrelated 

to the reason a person needs an organ 

transplant, the disability will generally have 

little or no impact on the likelihood of the 

transplant being successful.

■ If a person with a disability receives 

adequate support, 

the person’s 

disability should 

also have very 

limited impact on 

the ability to adhere 

to a post-transplant 

care regimen. For 

some transplant 

candidates with 

disabilities, postoperative care would require 

careful coordination between the person’s 

primary care and other providers, the 

person’s circle of support, and the transplant 

team, but such support and coordination can 

be provided.

■ Doctors, clinicians, and other medical 

experts, including those who are part of 

the organ transplantation process, differ in 

their perspectives with respect to whether 

people with disabilities should receive 

equal priority for organ transplants. Some 

doctors are concerned that people with 

intellectual and developmental disabilities 

(I/DD) and mental health disabilities will be 

unable to comply with necessary postoperative care. Others may believe that 

the person’s disability impacts the medical 

likelihood of transplant success, such as 

the graft or patient survival rate. Still other 

doctors have published significant research 

debunking myths and stereotypes about 

the medical suitability of people with 

particular types of disabilities for organ 

transplants.

■ Disability-related policies vary greatly 

across organ transplant centers and 

across categories of disability. Many 

centers may have a 

current or past policy 

that treats HIV or AIDS, 

psychiatric disabilities, 

or intellectual and 

developmental 

disabilities (I/DD) as 

relative or absolute 

contraindications to 

transplant.

■ While rarely invoked in this context, 

the Americans with Disabilities Act and 

Section 504 of the Rehabilitation Act 

prohibit organ transplant centers from 

discriminating on the basis of disability. 

Limited enforcement is likely due to the timesensitive nature of organ transplant decisions, 

and the fact that federal litigation can take 

years to resolve. The lack of federal guidance 

may also contribute to the lack of litigation 

under federal antidiscrimination laws.

■ Nine states have laws banning organ 

transplant discrimination. Newer state 

laws often, but not always, include more 

The assumption that people with 

disabilities will not be able to 

comply with postoperative care has 

caused disability to be considered a 

contraindication to organ transplant 

at many transplant centers 

Organ Transplants and Discrimination Against People with Disabilities 13
protections against discrimination than 

older laws. Despite the existence of both 

state and federal antidiscrimination laws, 

disability-based discrimination in the organ 

transplant process continues to occur.

■ UNOS/OPTN has proposed organ 

procurement policies that pose serious risk 

to people with disabilities. Existing policies 

and practices fail to protect people with 

disabilities from being pressured to donate 

organs, and some recent OPTN proposals 

would weaken the few protections that 

currently exist.

■ The fair allocation of organs is a complex 

and much-debated 

ethical issue among 

bioethicists and 

other stakeholders. 

At the heart of the 

debate are concerns 

about scarcity of 

transplantable 

organs and societal beliefs about the worth 

of the life of a person with a disability. 

While there is no broad consensus, most 

individuals interviewed for this report believe 

that organs should be allocated purely on 

the basis of medical necessity, rather than a 

subjective analysis of the individual’s quality 

of life before or after the transplant.

Key Recommendations

The Department of Justice (DOJ), in 

conjunction with the Department of 

Health and Human Services (HHS)

■ DOJ, in conjunction with HHS, should 

release guidance and provide technical 

assistance clarifying that Titles II and III of 

the Americans with Disabilities Act (ADA) 

and Section 504 of the Rehabilitation Act 

of 1973 apply to organ transplant centers 

and hospitals. This guidance and technical 

assistance should detail the obligations of 

organ transplant centers and hospitals to 

avoid discriminating on the basis of disability 

in the organ transplant process and advise 

organ transplant centers how to ensure 

their evaluation of candidates complies with 

federal law. This guidance and technical 

assistance should:

● Emphasize that the United Network 

for Organ Sharing (UNOS)/Organ 

Procurement and 

Transplantation Network 

(OPTN) should ensure 

that its policies are 

consistently applied in 

a manner that avoids 

discrimination.

● Explicitly state that making assumptions 

regarding the post-transplant quality of 

life for people with disabilities violates 

federal law.

● Make clear that the ADA and Section 504 

apply throughout the organ transplant 

process, including informal eligibility 

determinations, such that disability 

should only be taken into account 

to the extent that it can be clearly 

shown to be likely to impair successful 

transplantation.

● Encourage priority review of any cases 

brought challenging discrimination on the 

basis of disability in the organ transplant 

Despite the existence of both state 

and federal antidiscrimination laws, 

disability-based discrimination 

in the organ transplant process 

continues to occur

14 National Council on Disability
context in acknowledgment of the timesensitive nature of a transplant denial.

● Delineate organ transplant center 

and physician responsibilities under 

Section 504 and the ADA to make 

reasonable modifications in their policies, 

practices, and procedures for people 

with disabilities seeking transplantation, 

and to ensure effective communication 

with those people including by providing, 

among other things, accessible digital 

and print materials for patients and 

families. Reasonable modifications 

should include ensuring that a patient 

has the necessary support services to 

comply with postoperative care.

■ DOJ and HHS should also provide technical 

assistance to organ transplant centers and 

physicians in complying with the foregoing 

obligations. Issuing guidance and providing 

technical assistance would increase the 

likelihood that the application of the ADA, 

Section 504, and Section 1557 to the organ 

transplant process would be understood 

and that compliance with these laws would 

prevent disability discrimination in the organ 

transplant process. Organ transplant center 

policies that discriminate could more easily 

be challenged, and it could become easier to 

address the hidden discrimination inherent 

in the evaluation process.

UNOS/OPTN

■ UNOS/OPTN should ensure that individuals 

and families are able to make informed 

decisions about the withdrawal of lifesustaining treatment prior to and independent 

from any contacts from organ procurement 

organizations.

State Legislatures

■ State legislatures should adopt clear and 

detailed laws prohibiting disability-based 

discrimination in the organ transplantation 

process, including complaint procedures, 

with expedited priority review for these 

complaints and robust remedies for 

discrimination, especially considering that 

timeliness can be a matter of life and death 

in cases involving organ transplants.

Organ Transplants and Discrimination Against People with Disabilities 15
16 National Council on Disability
Acronym Glossary

ADA Americans with Disabilities Act

ALS amyotrophic lateral sclerosis

ASAN Autistic Self Advocacy Network

DALYs Disability Adjusted Life Years

DOJ Department of Justice

DREDF Disability Rights Education & Defense Fund

EMTALA Emergency Medical Treatment and Active Labor Act

GWU George Washington University

HCBS home and community-based services

HHS Health and Human Services

I/DD intellectual and developmental disabilities

LTTS long-term services and supports

LVAD left ventricular assist device

MELD Model for End Stage Liver Disease

NCD National Council on Disability

NIDILRR National Institute on Disability, Independent Living, and Rehabilitation Research

NOTA National Organ Transplant Act of 1984

OCR Office for Civil Rights

OPO organ procurement organizations

OPTN Organ Procurement and Transplantation Network

PCC Physicians for Compassionate Care

QALYs Quality Adjusted Life Years

SAMHSA Substance Abuse and Mental Health Services Administration

UMMC University of Maryland Medical Center

UNOS United Network for Organ Sharing

Organ Transplants and Discrimination Against People with Disabilities 17
18 National Council on Disability
Glossary

Contraindication: An indication that a particular candidate for an organ transplant is unsuitable for 

organ transplantation. Contraindications are usually identified by organ transplant centers during the 

evaluation process described in Chapter 1.

Graft survival: The probability of the organ itself continuing to function at some specific point 

after transplantation. For example, if four kidneys are transplanted into four patients and two of the 

transplanted kidneys fail after a year (forcing these two patients to go back on dialysis), this would 

reflect a 50 percent 1-year graft survival rate.

Medical noncompliance. The inability or failure to follow a prescribed course of treatment. While 

some disabilities may be related to a higher rate of medical noncompliance after organ transplant 

unless the person with a disability receives sufficient supports, medical noncompliance is not 

necessarily linked to disability.

Organ Procurement Organization (OPO): Centers for Medicare and Medicaid Services (CMS)-designated 

organizations that have two roles: (1) increasing the number of registered donors in the area in which they 

serve; (2) coordinating the actual donation and transport of the donated organ once the organ becomes 

available for donation (either via the donor’s consent or the donor’s death, depending on the organ).

Organ Procurement and Transplantation Network (OPTN): The United States’ organ transplant 

network. All organ transplant centers, organ procurement organizations (OPOs), and others involved 

in the process of transplanting organs are members. OPTN coordinates the entire organ transplantation 

process. It runs the computerized system used to match donated organs to recipients, creates the 

medical criteria used to determine when each person on the national waiting list receives an organ, and 

provides medical and ethical guidance to organ transplant centers and OPOs.

Organ transplantation: The process of transplanting a solid organ (such as a liver, kidney, or heart) 

from one body into another, as well as ensuring that the body accepts the transplant.

Patient survival: The likelihood that the recipient of an organ transplant will be alive at some specific 

point after transplantation. For example, if four hearts are transplanted into four patients and only two 

of them survive after a year, this would reflect a 50 percent 1-year patient survival rate.

Renal transplantation: The transplantation of a kidney.

United Network for Organ Sharing (UNOS): The nonprofit organization that acts as the sole 

contractor managing the United States’ national organ transplant waiting list and the Organ 

Procurement and Transplantation Network (OPTN).

Organ Transplants and Discrimination Against People with Disabilities 19
The fair allocation of organs is a complex 

and much-debated ethical issue among 

bioethicists and other stakeholders

At the heart of the debate are concerns 

about scarcity of transplantable organs 

and societal beliefs about the worth 

of the life of a person with a disability

While there is no broad consensus, most 

individuals interviewed for this report 

believe that organs should be allocated 

purely on the basis of medical necessity, 

rather than a subjective analysis of the 

individual’s quality of life before or after 

the transplant

20 National Council on Disability
Introduction

One of the most persistent and enduring 

debates in the field of bioethics and 

health is how best to allocate scarce 

medical resources. Medical resources—such 

as medications, treatments, hospital beds, or 

supplies—are considered scarce when there 

is a limited supply but a high demand. Medical 

resource scarcity often results in the need to 

prioritize some patients’ needs over those of 

others, even though such prioritization may deny 

some patients access to lifesaving care.

Transplantable organs are among the 

scarcest of all medical 

resources. According 

to data from UNOS, 

there are currently more 

than 113,000 people on 

the national transplant 

waiting list, and over 

6,500 people died while 

on the waiting list in 2017.1 Due to the scarcity 

of transplantable organs and the life-or-death 

implications of organ allocation decisions, fair 

allocation of transplantable organs is critically 

important.

People with disabilities are, however, 

frequently denied equal access to organ 

transplants. Denials of equal access may 

result from organ transplant centers’ written 

and unwritten policies excluding people with 

disabilities as candidates for transplant, and even 

refusing to evaluate a particular person’s medical 

suitability for an organ transplant because of the 

person’s disability. Discrimination by physicians 

and organ transplant centers also may result in 

people with disabilities being given lower priority 

for transplants than people without disabilities.

This report discusses the history, causes, and 

bioethical implications of disability discrimination 

in organ transplantation and recommends 

approaches to reduce the likelihood of such 

discrimination.

How Does the 

Report Define 

“Disability”?

This report uses a broad 

definition of the term 

“disability” as it is 

defined in the Americans 

with Disabilities Act (42 U.S.C. § 12102). Under 

that definition, a disability is any physical or 

mental impairment that substantially limits a 

“major life activity” or “major bodily function” (for 

example, a physical task such as eating, drinking, 

or moving or a cognitive task such as reading, 

concentrating, or thinking).2 A wide array of 

individuals are “people with disabilities” covered 

by the ADA, including people with intellectual 

and developmental disabilities (I/DD); people 

According to data from UNOS, there 

are currently more than 113,000 

people on the national transplant 

waiting list, and over 6,500 people 

died while on the waiting list in 2017

Organ Transplants and Discrimination Against People with Disabilities 21
with psychiatric disabilities; people with physical 

disabilities such as mobility-related impairments, 

deafness, and visual impairments; and people 

with chronic ailments or diseases (such as being 

HIV-positive or having AIDS). Most of the policies 

the NCD research team examined for this report 

specifically addressed people with I/DD, people 

with psychiatric disabilities, and people who are 

HIV positive or have AIDS. This report therefore 

focuses on the impact of organ transplantation 

policies on these three populations of people 

with disabilities.

Summary of Methodology

In order to present a clear and comprehensive 

picture of disability discrimination as it manifests 

at each stage of the organ transplant process, 

the NCD research team consulted stakeholders 

(including doctors, clinicians, and people with 

disabilities and their families); federal laws 

pertaining to disability as well as specific state 

laws banning disability discrimination in organ 

transplantation; organ transplant center policies; 

UNOS/OPTN guidelines; and relevant scholarly 

articles from legal, medical, and bioethical 

perspectives.

Qualitative Data

To understand the day-to-day impact of unequal 

access to organ transplants on people with 

disabilities, NCD conducted seven in-depth 

interviews with a variety of stakeholders. Our 

interviews were with representatives of advocacy 

organizations who serve people with disabilities, 

a clinician who assists people with disabilities in 

acquiring the services and supports they need 

to comply with postoperative care, a bioethicist 

with expertise in ethical issues relating to organ 

transplantation, and people who have been 

denied access to an organ transplant on the 

basis of disability. These interviews helped 

demonstrate how organ transplant discrimination 

is experienced by people with disabilities and 

supported NCD’s conclusions in this report. 

NCD was unable to interview any executives or 

directors of organ transplant centers.

Quantitative Data

NCD used the UNOS/OPTN member directory 

to determine how many organ transplant centers 

there are in each geographic region as assigned 

by UNOS/OPTN, as well as how many organ 

transplant centers exist in states with organ 

transplant discrimination laws.

Literature Review

NCD conducted a comprehensive literature 

review of federal laws, statutes, and policies 

affecting people with disabilities, with a particular 

focus on how these laws might impact organ 

transplantation. NCD acquired and reviewed 

the text of all nine state laws banning disability 

discrimination in the organ transplant context, 

as well as the text of pending legislation in 

two states. NCD also conducted an extensive 

search on commonly used legal databases for 

law review articles and law journal excerpts 

pertaining to organ transplantation. To obtain 

information on how organ transplant centers 

view disability, as well as the perspectives of 

medical and ethical experts on organ transplants, 

NCD reviewed articles from research journals, 

bioethics journals, and news articles pertaining to 

organ transplantation and disability.

Limitations

Three of the seven people NCD interviewed were 

the family members of people with disabilities 

22 National Council on Disability
who were discriminated against at some point 

during the organ transplantation process. All 

three individuals interviewed were part of highprofile cases that were covered in depth by the 

national and local press. In addition, all of the 

people who were available for interviews had 

family members with I/DD and one had a family 

member with co-occurring I/DD and psychiatric 

disability. They therefore did not represent the 

full diversity of individuals who have been subject 

to organ transplant discrimination.

NCD’s research team has attempted to 

supplement its qualitative data by searching 

for news articles, research articles, and other 

information pertaining to people with other 

disabilities and includes that information in 

this report.

The qualitative data NCD gathered represents 

only the views of specific individuals who have 

been subjected to discrimination and complements 

rather than supplants the quantitative data and 

literature review.

Organ Transplants and Discrimination Against People with Disabilities 23
24 National Council on Disability
Chapter 1: The Organ Transplantation Process 

and Discrimination on the Basis of Disability

Introduction

OPTN is under the jurisdiction of United 

States Department of Health and Human 

Services (HHS)3 and is managed by 

UNOS.4 These entities supervise organ transplant 

centers, which are components of larger 

hospitals.5 UNOS/OPTN also supervises organ 

procurement organizations (OPOs).

As explained throughout this report, disability 

discrimination, particularly discrimination against 

people with psychiatric disabilities and people 

with I/DD, can be found at almost all stages of 

the organ transplantation process.

A Brief Overview of the Organ 

Transplant Process

There are four steps to the organ transplant 

process:8

1. The patient’s physician refers the patient to 

an organ transplant center.

2. The organ transplant center evaluates the 

patient’s eligibility for an organ transplant.

3. If the organ transplant center determines 

that the patient is eligible, the organ 

transplant center places the patient on the 

national waiting list.

4. If a match is found, the transplant center 

carries out transplantation of that organ.

When a patient is referred by a physician in 

Step 1, the patient must then be evaluated 

by one of the nation’s 2526 organ transplant 

centers to determine whether the patient meets 

that transplant center’s criteria for an organ 

transplant.7 Although the evaluation process 

is often initiated after the patient’s physician 

provides the patient with a referral to a specific 

local organ transplant center, a referral from a 

physician is not necessary in order to receive an 

evaluation, and the patient (or the patient’s legally 

authorized guardians or decision makers) may 

choose to contact whichever transplant center 

best meets the patient’s needs (often referred to 

as self-referral).9

The typical evaluation consists of various 

medical tests to determine current health status 

and evaluations of the patient’s psychological 

health, financial situation, and social supports.10

The exact process varies among transplant 

centers, as each center determines its own 

criteria for evaluating patients.11 Each organ 

transplant center is required by law to provide its 

specific guidelines and criteria for inclusion and 

exclusion of patients as candidates for transplant 

Organ Transplants and Discrimination Against People with Disabilities 25
to both OPTN and the local OPO with which it is 

affiliated.12

The transplant team may include:

■ transplant physicians (doctors who manage 

the patient’s medical care, testing, and 

medications);

■ transplant surgeons (the doctors who 

actually perform the organ transplantation);

■ financial coordinators (who work with the 

patient and hospital administrators with 

respect to the financial aspects of the 

patient’s care);

■ transplant coordinators (who are responsible 

for the patient’s evaluation, treatment, and 

follow-up care); and

■ social workers 

(who help patients 

prepare for 

transplant mentally 

and emotionally).13

The evaluation stage 

is typically when the transplant team learns 

whether the patient has a disability other than 

the condition that led to the need for a transplant. 

Sometimes, however, the patient or the patient’s 

family has already provided this information 

during earlier conversations with the transplant 

team.

Following the evaluation, the transplant team 

determines whether or not they will accept the 

patient as a candidate for transplant.14 The organ 

transplant team’s decisions are typically informed 

by guidelines produced by recognized experts 

in the field,15 such as the International Society 

for Heart and Lung Transplantation’s heart 

transplantation criteria,16 as well as the policies 

of their particular organ transplant center, as 

discussed above. On occasion, these criteria and 

policies do in fact reference specific disabilities 

and may even refer to specific types of 

disabilities as relative contraindications (e.g., HIV/

AIDS), factors that weigh against transplanting an 

organ into a specific candidate.17 The transplant 

team itself retains a great deal of discretion when 

evaluating which individuals it will recommend for 

transplant, and therefore may consider additional 

factors not included in these criteria.18

If the transplant team decides that they will 

accept the patient as a candidate for transplant, 

the transplant team places the candidate on 

the OPTN national waiting list.19 All candidates 

for transplant must be registered on the OPTN 

waiting list20 pursuant to NOTA.21 Patients with 

a living, known donor 

are often able to get off 

of the waiting list more 

quickly because they do 

not have to wait for an 

organ from a deceased 

donor.22

OPTN sets medical criteria specific to each 

organ that govern the allocation of donated 

organs to recipients on the national waiting 

list.23 In general, these criteria focus on four 

concerns: (i) medical compatibility between the 

donor and organ recipient (for livers, this would 

include blood type and liver size),24 (ii) how 

long the patient has been on the waiting list, 

(iii) the distance between the donated organ or 

living donor and the recipient, and (iv), for some 

organs such as livers and hearts, how urgently 

the transplant is needed.25 Medical urgency is 

taken into account with respect to some organs 

and not others because with some organs, 

such as kidneys, it is possible to survive for 

a longer period of time without receiving a 

The transplant team itself retains 

a great deal of discretion when 

evaluating which individuals it will 

recommend for transplant 

26 National Council on Disability
transplant than is the case with other organs 

(e.g., through the use of dialysis instead of a 

kidney).26

Where medical urgency is one of the medical 

criteria for transplant, however, it is one of the 

most important factors, as it determines how 

long the patient can afford to wait for an organ 

before the patient’s life is at risk. The patients 

are therefore “ranked”—that is, prioritized on the 

waiting list—by the OPTN in the order of their 

medical urgency and time spent on the waitlist 

at a specific priority level.27 For example, for liver 

transplants, “[m]edical urgency is determined 

by” the liver patient’s Model for End Stage Liver 

Disease (MELD) score.28 Each patient’s MELD 

score, time on the waitlist, and geographical 

distance from the organ places them within 

one of thirteen priority categories, of which 

the designations 1A and 1B are “the most 

medically needy.”29 Local and regional 1A and 1B 

candidates are at the top of the waitlist, followed 

by eleven other categories that rotate among 

local, regional, and national candidates, where 

candidates are ranked based on descending 

MELD score and length of time on the waitlist.30

None of the criteria used by OPTN mention or 

consider any unrelated disability in the organ 

recipient (such as an intellectual disability, 

psychiatric disability, or HIV) to be relevant to the 

allocation decision.31

OPTN’s criteria are occasionally amended or 

changed. For example, OPTN’s criteria for the 

allocation of hearts originally divided patients 

on the waiting list into three designations 

based on medical urgency, conveyed here in 

descending order of urgency: 1A, 1B, and 2.32

As of October 2018, patients are now divided 

into six statuses, and patients with the most 

urgent need may receive hearts transported 

from up to 500 miles away (farther than they 

would have been transported under the older 

guidance).33

To match donor organs to patients, OPOs 

will “typically [access] the computerized organ 

matching system, [enter] information about the 

donor organs, and [run] the match program” 

unless the OPO requests that OPTN’s Organ 

Center handle the matching process or “there 

is a need to identify” a perfectly matched 

donor and recipient for a kidney transplant.34

The computerized program generates a list of 

possible recipients for each donated organ and 

prioritizes the recipients based on “objective 

criteria (i.e., blood type, tissue type, size of 

the organ, medical urgency of the patient, 

time on the waiting list, and distance between 

donor and recipient).”35 The specific criteria 

considered depend on the type of organ being 

transplanted,36 but information in the computer 

system is entered by transplant centers, and 

OPOs rely on their determinations when finding 

a match.

Once the computer generates the list of 

potential recipients, the OPO’s procurement 

coordinator contacts the transplant surgeon 

caring for the highest-ranked patient on the 

list and offers the organ to that patient.37 If the 

transplant surgeon decides that the organ is 

not “suitable” for that patient, based on factors 

including “the donor’s medical history and the 

current health of the potential recipient,” the 

transplant surgeon can turn the organ down.38

If the organ is turned down, the procurement 

coordinator then continues down the list until 

one of the transplant centers accepts the organ.39

UNOS is constantly working with transplant 

centers to find ways for less-than-perfect organs 

to still be effective for transplants, including 

Organ Transplants and Discrimination Against People with Disabilities 27
organs from donors with disabilities or treatable 

illnesses.40

How Many Organ Transplant Centers 

Are There?

According to the OPTN member directory, as 

of March 2019, there were 252 organ transplant 

centers in the United States.41 All organ 

transplant centers are members of the OPTN.42

As transplant centers are subdivisions of medical 

centers or hospitals, the entire hospital or 

medical center is listed in the OPTN member 

directory.43

OPTN divides the United States into 

geographic regions in 

order to better facilitate 

efficient transplantation 

of organs.44 There are 

11 regions total, and 

58 OPOs that assist 

with the transport of 

donated organs to their 

recipients. OPOs will be 

discussed in more detail 

in the section, “Organ 

Procurement Policies and Practices and Their 

Effect on People with Disabilities.” Table 1 in 

the Appendix identifies the states in each of the 

11 regions and shows how many organ transplant 

centers are located in each geographic region. 

Table 2 in the Appendix lists the number of organ 

transplant centers located in each state, as well 

the geographic region in which each state is 

located.

Disability Discrimination 

by Physicians

Physicians, including both personal physicians 

and physicians working for organ transplant 

centers, sometimes refuse to recommend 

that a person with a disability receive an organ 

transplant on the basis of that person’s disability, 

even when the disability should not impact the 

success of an organ transplant. In these cases, 

personal physicians may refuse to provide a 

referral for the patient to receive an evaluation 

at a transplant center or physicians working for 

organ transplant centers may refuse to evaluate 

a referred patient or to place that patient on the 

waiting list following the evaluation.

This discrimination can be explicit and 

deliberate, such as a physician directly stating 

that he or she is not recommending a person 

with a disability be 

placed on the waiting list 

for an organ transplant 

because of that disability. 

But it is also possible for 

a physician’s prejudice 

toward people with 

disabilities to influence 

decision making in 

more subtle ways. For 

instance, a physician 

could, because of disability-related stereotyping, 

prejudice, or unfamiliarity with people with a 

disability, mistake symptoms of organ failure 

for a psychological ailment or a more minor 

physical ailment.

To better understand physician discrimination, 

NCD interviewed Karen Corby for this report. 

Karen Corby is the mother of Paul Corby, an 

autistic man with psychiatric disabilities who 

was denied an organ transplant. Karen Corby 

described a series of doctors’ visits in which 

each doctor who evaluated Paul Corby insisted 

that his worsening physical condition was 

merely a symptom of anxiety.45 According to 

Physicians ... sometimes refu

to recommend that a person 

with a disability receive an organ 

transplant on the basis of that 

person’s disability, even when the 

disability should not impact the 

success of an organ transplant

28 National Council on Disability
Paul’s mother, while the doctors initially thought 

Paul’s symptoms could signal heart problems, 

they began saying his symptoms were due to 

anxiety once they learned that Paul has autism.46

This continued for 3 months, through visits to 

doctors’ offices or the hospital for vomiting, 

chest pains, or persistent cough.47 Despite 

these symptoms, rapid heartbeat, and inability 

to eat, Paul’s doctors never tested his heart and 

continued to say Paul’s symptoms were caused 

by anxiety.48

Physicians may also fail to recommend 

standard therapies or treatments to people 

with disabilities that they would recommend 

immediately to patients 

without disabilities. 

For example, the 

NCD research team 

interviewed Jessica 

Sunshine Bodey, the 

mother of Lief O’Neill, 

an 11-year-old boy in 

critical need of a heart 

transplant. While the 

family was informed that 

Lief was being denied 

a transplant because he had autism—a decision 

they found discriminatory—Lief’s medical team 

also did not inform them that bridge therapies 

were available to extend his life while he waited 

for a transplant.49 The bridge therapy in question, 

a left ventricular assist device, or LVAD, is 

considered a standard “bridge therapy” on the 

way to receiving a transplanted heart.50 Lief 

ultimately needed four consecutive LVADs to 

survive.51

Lief’s experience is not unique: people with 

disabilities often do not receive the services and 

supports they need in the organ transplantation 

process. A 2004 survey, the most recent one 

available, found that only 52 percent of people 

with disabilities who requested a referral to 

a specialist regarding an organ transplant 

evaluation actually received a referral, while 

35 percent of those “for whom a transplant 

had been suggested” never even received an 

evaluation.52 NCD was unable to find a study 

that specifically examined organ transplant 

referrals and evaluation rates for people without 

disabilities, but two studies that looked at 

transplant populations as a whole suggest that 

people without disabilities receive referrals and 

evaluations at higher rates than people with 

disabilities. One study 

examining patients 

with liver disease at a 

Veterans Affairs center 

between 2002 and 2003 

found that, while many 

barriers to transplantation 

exist, of patients who 

received a referral, 

75 percent received an 

evaluation.53 Another 

study found that between 

92.1 and 95.5 percent of patients deemed 

appropriate for evaluation for kidney transplant 

received a referral and that of those, 81.4 percent 

were placed on the transplant waiting list.54

Disability Discrimination by Organ 

Transplant Centers

The primary forms of disability discrimination 

practiced by organ transplant centers are (1) the 

refusal to evaluate a person with a disability as 

a candidate for transplant and (2) the refusal to 

place a person with a disability on the national 

organ transplant waiting list.

52 percent of people with 

disabilities who requested a referral 

to a specialist regarding an organ 

transplant evaluation actually 

received a referral, while 35 percent 

of those “for whom a transplant 

had been suggested” never even 

received an evaluation

Organ Transplants and Discrimination Against People with Disabilities 29
Refusal to Evaluate a Person 

with a Disability as a Candidate

In some cases, organ transplant centers may 

categorically refuse to evaluate a patient with a 

disability as a candidate for transplant. Christine 

Rivera, the mother of Amelia Rivera—a 3-yearold girl with a developmental disability who 

needed a kidney transplant—stated that the 

organ transplant center that evaluated Amelia 

made no attempt to determine her medical 

suitability for transplant.55 Instead, the doctor 

explained that the transplant center would never 

place her on the waiting list because she had an 

intellectual disability.56 Ms. Rivera explained that 

one of her own family members would donate 

the organ, meaning there would be no need 

to place her daughter 

on the OPTN waiting 

list, but the doctor 

continued to vehemently 

refuse to consider an 

organ transplant for her 

daughter.57

Disability Discrimination During 

the Evaluation

As discussed in Chapter 3, many organ transplant 

centers have written policies or practices that 

arguably fail to follow federal law by facially 

discriminating on the basis of disability. That 

said, there are few empirical studies analyzing 

how organ transplant centers actually evaluate 

patients for transplantation, particularly with 

respect to how any particular disability influences 

which patients are selected. A study conducted 

by Stanford University in 2008, for example, 

showed that 62 percent of pediatric transplant 

centers tended to make “eligibility decisions 

based on disability . . . informally, making 

discrimination difficult to show.”58 A more recent 

2017 study found that no comprehensive study 

of the patient selection criteria for US-based 

transplant programs for people with psychiatric 

disabilities had been conducted in over 

20 years.59 But it appears that many transplant 

centers, including those that either lack written 

policies or have written nondiscriminatory 

policies, discriminate on the basis of disability 

when evaluating patients for organ transplants.

Disability discrimination persists in the 

evaluation process because, in spite of evidence 

to the contrary,60 many physicians still view HIV 

and AIDS, as well as intellectual, developmental, 

or psychiatric disabilities, as relative or absolute 

contraindications to transplant, and many 

transplant centers 

continue to consider 

the disabilities of 

organ transplant 

candidates when 

making determinations 

about which candidates 

are eligible to be placed on the waiting list 

for a transplant.61 This view of disability as an 

absolute or relative contraindication to an organ 

transplant reveals pervasive biases within the 

medical community demonstrating that disability 

discrimination during the evaluation process is a 

problem.

For instance, a 2006 National Public Radio 

story found that about 60 percent of transplant 

centers report having serious reservations 

about giving a kidney to someone with a mild to 

moderate intellectual disability.62 A subsequent 

2008 survey of pediatric transplant centers 

found that 43 percent always or usually consider 

intellectual disabilities an absolute or relative 

contraindication to transplant due to assumptions 

In some cases, organ transplant 

centers may categorically refuse to 

evaluate a patient with a disability 

as a candidate for transplant

30 National Council on Disability
about quality of life, concerns regarding 

“compliance or long-term self-care,” “financial 

concerns,” and “the functional prognosis of the 

delay itself.”63 The patient’s “degree” of and 

type of I/DD mattered in the 2008 study: while 

40 percent of transplant programs reported 

that I/DD would “never” be an absolute 

contraindication to transplant, 21 percent of 

the programs reported that “severe delay” was 

an absolute contraindication and 19 percent 

reported that “profound delay” was an absolute 

contraindication.64

There may have been small improvements 

over the last few decades in how candidates 

with I/DD are evaluated for organ transplants. 

Prior to the 1990s, intellectual disability was 

typically regarded as 

a contraindication to 

organ transplant.65 In 

1995, 65 percent of 

second-year medical 

students viewed 

Down syndrome as 

a contraindication to 

heart transplant and only 31 percent rated 

it as irrelevant.66 By 2013, in a study of liver 

transplant providers, 82 percent did not see 

“mild cognitive disability” as a contraindication 

to transplant at all, and 42.6 percent did not 

see “moderate cognitive disability” as a 

contraindication.67 All but 11 percent of these 

transplant centers, however, saw “severe 

cognitive disability” as a contraindication.68

Indeed, a 2018 article found that providers 

and medical associations continue to view 

I/DD as a contraindication for organ transplants 

for pediatric patients because of assumptions 

about the patient’s quality of life, lifespan, and 

post-transplant compliance.69

... [A]bout 60 percent of transpla

centers report having serious 

reservations about giving a kidney 

to someone with a mild to moderate 

intellectual disability

The same 2013 survey of liver transplant 

providers found that while most organ transplant 

centers did not consider psychiatric disability to 

be an absolute contraindication to transplant, 

they did rank it among the top three “most 

controversial” characteristics of patients.70

Provider opinions also differed based on whether 

the person with the psychiatric diagnosis was 

“stable” or “unstable,” which appears to refer 

to the degree to which the person managed 

symptoms, and the number of suicide attempts.71

For example, when the patient had “acute liver 

failure,” a diagnosis of “major psychiatric illness, 

stable” was not considered a contraindication 

by 57.6 percent of respondents, was viewed 

as a relative contraindication by 41.2 percent 

of respondents, and 

was viewed as an 

absolute contraindication 

by 1.2 percent of 

respondents.72 But the 

diagnosis of “major 

psychiatric illness, 

unstable” was viewed as 

an absolute contraindication by 39.8 percent of 

respondents, and as a relative contraindication by 

another 52.9 percent of respondents.73

The belief that patients with psychiatric 

disabilities will be unable to comply with posttransplant regimens, including medication 

and follow-up appointments may “lead to the 

creation of eligibility criteria that bar patients 

with psychotic disorders from [transplants]” 

despite the fact that “studies demonstrate that 

the overall noncompliance rate of psychiatric 

patients falls within the range of noncompliance 

seen in the larger transplant population.”74 Some 

medical professionals also view psychiatric 

disabilities as a contraindication for organ 

Organ Transplants and Discrimination Against People with Disabilities 31
transplants based on the belief that people with 

psychiatric disabilities enjoy a lower quality of 

life and thus should not benefit from a resource 

as scarce as organs.75

Patients who are HIV-positive are less likely 

to face discrimination on the basis of disability 

in the evaluation 

process than in the 

past. Perhaps because 

the life expectancy 

and prognosis of those 

with the condition have 

improved dramatically.76

Since it was first 

discovered, a diagnosis of HIV-positive is no 

longer considered an absolute contraindication 

by most organ transplant centers.77 But it is 

worth noting that 54.6 percent of respondents 

to the 2013 survey still considered HIVpositive status to be a relative contraindication, 

suggesting that HIVpositive status remains 

a factor that weighs 

against a candidate 

being accepted as a 

patient.78

The informal nature 

of evaluations for organ 

transplants may also 

lead to discrimination on 

the basis of disability. 

A 2009 study of pediatric 

transplant centers stated 

that 69 percent of those 

surveyed reported 

that their transplant 

center’s process for evaluating the relevance of 

neurodevelopmental disability to eligibility for an 

organ transplant, on a scale of 1 to 5, was mostly 

“informal, implicit, or unstated” as opposed to 

“formal, explicit, and uniform.”79 This “lack of 

uniformity” in organ transplant center guidelines 

could produce situations in which a patient could 

be rejected by one organ transplant center but 

accepted by another, even in the same state.80

Yet patients may not 

realize they can “shop” 

for transplant centers 

in the same way the 

US healthcare system 

allows them to “shop” 

for doctors; others may 

not be able to do this 

because of health, financial, or transportation 

issues.

Rectifying discrimination on the basis 

of disability in the organ transplant process 

may involve imposing additional procedural 

requirements on organ transplant centers to 

prevent inconsistent, 

subjective decision 

making that facilitates 

discrimination. David 

Magnus, a professor of 

Medicine and Biomedical 

Ethics at Stanford 

University, argues that 

the solution to this 

opaque kind of decision 

making is not to merely 

say, ”You shouldn’t 

discriminate,” but rather 

to standardize or specify 

the evaluation process 

transplant centers 

must use so that psychosocial assessments 

of transplant candidates are as objective and 

evidence-based as possible.81

“[S]tudies demonstrate that the 

overall noncompliance rate of 

psychiatric patients falls within the 

range of noncompliance seen in the 

larger transplant population.

A 2009 study of pediatric 

transplant centers stated that 

69 percent of those surveyed 

reported that their transplant 

center’s process for evaluating the 

relevance of neurodevelopmental 

disability to eligibility for an 

organ transplant .. was most

“informal, implicit, or unstated” as 

opposed to “formal, explicit, and 

uniform.”

32 National Council on Disability
Organ Procurement Policies and 

Practices, and Their Effect on People 

with Disabilities

Disability-based discrimination occurs not 

only in the allocation of organs, but also in the 

procurement process. Existing policies have not 

adequately protected 

individuals and families 

from being contacted 

and even pressured by 

OPOs prior to a decision 

that life support will 

be withdrawn, even 

in cases involving ICU 

patients who recovered 

and went home.82 The 

newly injured population 

is particularly vulnerable 

to abusive organ procurement policies because 

their recent trauma and uncertain future makes 

them susceptible to “the message that their 

death would mean more to the people around 

them than their life.”83 People with disabilities 

in intensive care units 

whose prognoses are 

uncertain are likewise 

vulnerable to abuse 

in organ procurement 

practices.84 In the initial 

phase of an injury or a 

serious exacerbation of 

a chronic or progressive condition, healthcare 

decision making that could lead to death may 

be under consideration. Conditions that involve 

ongoing interventions, such as a feeding tube 

or even ongoing critical medications, may also 

involve decisions that lead to death. These 

situations all create potential for organ donation 

and, thus, activities by OPOs.

Colleen Burns, a woman with a history 

of depression who had overdosed on a toxic 

cocktail of drugs, provides one such example 

of this abuse. After her overdose, Colleen was 

declared brain dead, and was on the operating 

table after her family had agreed to allow organ 

donation when she 

woke up just before the 

process began.85 The 

hospital missed several 

signs that Colleen’s brain 

was still functioning, 

including that “her 

nostrils flared, her lips 

and tongue moved, she 

was breathing ‘above 

the ventilator’ (meaning, 

taking breaths of her own 

accord) [, a]nd when a nurse performed a reflex 

test, scraping a finger along the bottom of Burns’ 

foot, the woman’s toes curled inward.”86 Doctors 

also never ordered repeat CT scans, “inexplicably 

and inaccurately said that she suffered from 

cardiac arrest” although 

she had not, and, most 

critically, given that 

Colleen’s hospitalization 

was caused by a drug 

overdose, “failed to 

measure whether the 

drugs she had taken still 

lingered in her system, 

preventing her from exhibiting even the most 

primitive reflexes expected of someone with 

brain activity.”87

Discrimination in organ procurement is 

further complicated by the fact that doctors 

have varying opinions about what medically 

constitutes brain death, including the minimally 

The newly injured population is 

particularly vulnerable to abusive 

organ procurement policies because 

their recent trauma and uncertain 

future makes them susceptible to 

“the message that their death would 

mean more to the people around 

them than their life.

Discrimination in organ procurement 

is further complicated by the fact that 

doctors have varying opinions about 

what medically constitutes brain 

death 

Organ Transplants and Discrimination Against People with Disabilities 33
acceptable observation period to determine that 

brain function has irreversibly ceased.88 This 

uncertainty is heightened by policies surrounding 

determinations of brain death in hospitals, 

which vary widely and 

do not necessarily 

conform to accepted 

best practices.89

A survey of almost 500 

hospitals found that 

most do not require 

that someone with a 

background in neurology 

or neuroscience be 

present when brain death 

determinations are made, 

nor do they require 

the determination to be made by the patient’s 

attending physician.90 This lack of uniformity 

and precision in hospital policies and practices 

increases the likelihood of abuse, or at the very 

least, mistaken determinations of brain death, as 

in the case of Colleen Burns.

There have been 

several recent 

OPTN proposals and 

professional articles 

pushing to weaken 

protections for 

conscious people with 

disabilities91 and explicitly 

encouraging individuals 

to see themselves as 

sources of organs to 

save others.92 In 2017, 

the UNOS/OPTN Ethics Committee released a 

living donation white paper that recommended 

modifying OPTN policies for informed consent, 

psychosocial and medical evaluation, and followup used to determine the eligibility of a living 

donor in order to “accommodate” donations from 

people with certain fatal diseases (such as ALS 

and cystic fibrosis).93 Due to the white paper’s 

statements concerning 

assisted suicide and the 

psychological benefits 

of donation for people 

with fatal diseases 

and their families or 

communities, advocates 

expressed concern that 

such revised criteria 

may promote accepting 

living donors with fatal 

diseases who feel like 

they are a burden or 

who are seeking enhanced meaning by donating 

when such reasons would not be acceptable 

for other living donors.94 The proposal also 

suggested that scrutiny of donor deaths should 

consider circumstances in which the donor’s 

death was a result of the person’s “underlying 

disease, and not . . . the 

living donation process 

itself” differently than 

circumstances in which 

the donor’s death was 

related to the donation 

process.95

Other policy proposals 

discussed in professional 

articles, such as Organ 

Donation Euthanasia, 

which would allow for 

the removal of organs from patients whose 

poor prognoses would make them eligible to 

be withdrawn from life support under general 

anesthesia,96 may also serve to exacerbate 

A survey of almost 500 hospitals 

found that most do not require 

that someone with a background 

in neurology or neuroscience 

be present when brain death 

determinations are made, nor do 

they require the determination to 

be made by the patient’s attending 

physician

[A]dvocates expressed concern that 

such revised criteria may promote 

accepting living donors with 

fatal diseases who feel like they 

are a burden or who are seeking 

enhanced meaning by donating 

when such reasons would not be 

acceptable for other living donors

34 National Council on Disability
the pressures placed on people with these 

disabilities and their families regarding organ 

donation.97 UNOS/OPTN has also not established 

protocols to ensure that organs are not procured 

before a conscious potential donor has received 

appropriate psychological counseling and 

supports to live. For these vulnerable patients, 

this lack of protocols and policies may make them 

more susceptible to suggestions of the benefits 

of organ donation.

It is worth noting that 

recent developments 

in organ procurement 

have significantly 

increased the number 

of organs available to 

people with HIV awaiting 

transplant. While the 

first transplants of organs (a liver and kidney) 

from a deceased donor with HIV to HIV-positive 

recipients occurred in 2016,98 living donation of 

kidneys “was considered too dangerous because 

the infection and the medications that control 

it increase the chances of kidney disease.”99 In 

2017, however, Johns Hopkins conducted a study 

on 42,000 people100 that found that those “with 

well-controlled HIV have basically the same risks 

as those without HIV and are healthy enough 

to donate kidneys” because “new antiretroviral 

drugs are safe for the kidney.”101 In light of those 

findings, the first living kidney transplant between 

people with HIV was performed at Johns Hopkins 

in March of 2019, with the surgeons performing 

the surgery hoping that its success “will expand 

the pool of available organs and help change 

perceptions of HIV.”102

The donor, Nina Martinez, 

spoke of her choice to 

donate in similar terms, 

saying, “Society perceives 

me and people like me 

as people who bring 

death. . . . And I can’t 

figure out any better way 

to show that people like me can bring life.”103

In Chapter 6, “Recommendations,” NCD offers 

several recommendations for the Department of 

Health and Human Services that may help people 

with disabilities make their own informed choices 

about organ donation while preventing them 

from being discriminated against in the organ 

procurement process.

UNOS/OPTN has also not 

established protocols to ensure 

that organs are not procured before 

a conscious potential donor has 

received appropriate psychological 

counseling and supports to live

Organ Transplants and Discrimination Against People with Disabilities 35
36 National Council on Disability
Chapter 2: Ethical and Medical Perspectives on Organ 

Transplants for People with Disabilities

Medical Perspectives on Organ 

Transplants for People with 

Disabilities

Medical Practitioners and Transplants 

for People with Disabilities

Medical practitioners have generally 

voiced one of two opinions in the 

research literature about people 

with “mental disabilities” (including intellectual 

and developmental disabilities [I/DD] and/or 

psychiatric disabilities):

Opinion 1: They accept patients with mental 

disabilities on a case-by-case basis, but may 

have significant reservations about transplanting 

organs into these patients due to concerns about 

the patient’s potential inability to follow a posttransplant regimen.104

Opinion 2: They believe patients with mental 

disabilities should never be excluded from an 

organ transplant on the basis of disability and 

argue for increased equity with respect to these 

patients.105

As explained in Chapter 3, some organ 

transplant centers have written policies 

describing psychiatric disabilities as absolute 

contraindications to organ transplant. But with 

respect to I/DD, NCD did not find examples of 

doctors or clinicians who have opined that people 

with I/DD should never receive organ transplants. 

This may be because doctors rarely voice this 

opinion publicly: when one woman in Oklahoma 

with I/DD was denied a kidney, the transplant 

center that denied her refused to talk about the 

case with journalists investigating the denial 

of her transplant, instead citing confidentiality 

issues.106

Doctors at other organ transplant centers and 

hospitals maintain that they do not and never 

have used specific mental disabilities to exclude 

patients from organ transplantation.107 Even so, 

it is clear that this discrimination against people 

with mental disabilities exists, at least on a 

case-by-case basis. For instance, Ellie Ward, a 

3-year- old child with Down syndrome in Ohio, 

was denied a heart transplant because of her 

disability.108 The parents of Lili Parra, an infant, 

were told that their daughter was taken off the 

heart transplant waiting list merely because she 

was at risk of having a developmental disability.109

Among doctors and clinicians who hold the 

first opinion described above, the central concern 

is that that patients with mental disabilities 

will not be able to comply with complex 

postoperative care regimens. As a result of this 

view, “patients may be denied access to the 

[transplant] waiting list if their social supports are 

Organ Transplants and Discrimination Against People with Disabilities 37
deemed insufficient.”110 Other doctors believe 

that UNOS/OPTN should require organ transplant 

centers to submit data for patients with mental 

disabilities who do receive organ transplants so 

that UNOS/OPTN can evaluate how likely the 

patient’s cognitive impairment is to lead to “poor 

outcomes.”111

In another article, three doctors warned that 

people with intellectual disabilities would seldom 

be suitable candidates for organ transplants, 

stating that the International Society for Heart 

and Lung Transplantation still listed intellectual 

disability as a relative contraindication to heart 

transplant.112 The doctors stated that while 

patients with intellectual disabilities could be 

potential candidates for transplant, there was 

a need for a “twopronged” psychosocial 

evaluation of both the 

patient and the patient’s 

caregivers, which would 

determine whether the 

patient had sufficient 

support to comply with 

postoperative care.113

Doctors with the second opinion described 

above, who believe that people with mental 

disabilities should never be excluded from an 

organ transplant on the basis of disability, have 

also argued that there is a need to remediate 

historical discrimination against specific groups 

of people with mental disabilities, such as 

people with psychiatric disabilities114 and people 

with I/DD.115 Dr. Aaron Wightman, a professor 

of bioethics at the University of Washington 

School of Medicine, and his colleagues 

produced several research articles specifically 

on this topic.116 Wightman’s articles and analyses 

generally argue or show that I/DD has limited 

or almost no impact on the medical success of 

an organ transplant.117 Wightman additionally 

argues that people with I/DD should not be 

excluded from organ transplantation on the 

basis of what others assume about their social 

value, which he states is often the case when 

an organ transplant center excludes a person 

with I/DD based on the belief that they will 

have a lower quality of life than people without 

disabilities.118 Wightman does not provide 

examples of situations in which an organ 

transplant center has made such an exclusion. 

But some interviewees, such as Christine 

Rivera,119 report that such exclusions have 

indeed taken place.

With respect to postoperative care, 

Wightman argues that 

even though people 

with I/DD (especially 

children with I/DD) 

may require significant 

supports to comply, “a 

societal failure to meet 

the needs of those 

most vulnerable is not a reason to exclude 

them from receiving solid organ transplants.”120

Similar arguments assessing postoperative 

care for people with psychiatric disabilities 

state that successful organ transplantation is 

possible when individuals receive sufficient 

support.121

Medical Success of Organ Transplants 

for People with Disabilities

NCD reviewed relevant clinical studies on 

the impact of intellectual and developmental 

disability, psychiatric disability, and HIV on the 

success of an organ transplant. These studies 

consistently find that transplant outcomes 

These studies consistently find that 

transplant outcomes for people 

with disabilities are no worse than 

transplant outcomes for people 

without disabilities

38 National Council on Disability
for people with disabilities are no worse 

than transplant outcomes for people without 

disabilities.122

People with Intellectual and 

Developmental Disabilities (I/DD)

Research literature on transplant outcomes 

for people with I/DD refutes the concern that 

having an I/DD, in and of itself, has a significant 

negative impact on the medical success of an 

organ transplant. For instance, a 1998 study of 

kidney transplants found that the patient and 

graft survival rates for eight patients with I/

DD after 7.5 years were “excellent.”123 Similar 

outcomes exist for liver transplants, with a 

2016 study finding that children with I/DD have 

comparable short-term 

graft and patient survival 

rates to children without 

intellectual disabilities, 

although they had 

more treatmentrelated hospitalizations 

than people without 

disabilities during 

the first year after 

transplant.124

Heart transplantations into people with I/

DD are particularly controversial. In fact, the 

International Society for Heart and Lung 

Transplants only removed “mental retardation” 

[sic] as a relative contraindication to heart 

transplantation in the 2016 revision of their official 

guidelines.125 Nonetheless, studies find that that 

people with I/DD benefit significantly from heart 

transplants and that there are few justifications 

for denying them access.126

The only concerns relating to the medical 

success of an organ transplant that may hold 

some merit are those relating to some posttransplant outcomes for specific forms of I/DD. 

For example, since people with Down syndrome 

tend to have weaker immune systems, patients 

with Down syndrome may be at a higher risk 

for the development of cancer and infection 

after transplant than patients without Down 

syndrome.127 Nevertheless, as described in 

Chapter 3, denying all patients with Down 

syndrome organ transplants on the basis of their 

disability ignores individual differences between 

patients and possible risk mitigation strategies, 

and discriminates on the basis of disability in 

violation of federal law.

People with Psychiatric Disabilities

There is no clear link 

between psychiatric 

disabilities and poor 

transplant outcomes.128

In a 2017 literature 

review on outcomes for 

people with psychiatric 

disabilities receiving 

organ transplants, some 

studies found that the 

presence of a specific psychiatric disability or its 

symptoms (such as a history of suicide attempts 

in a person with depression) increased posttransplant mortality rates or organ rejection, 

while other studies found that the impact of 

the same psychiatric disability was relatively 

limited.129 Still other studies found that people 

with psychiatric disabilities who undergo organ 

transplantation do so very successfully with 

sufficient support, with at least one study 

determining that “psychiatric illnesses are not 

consistently associated with increased morbidity 

and mortality.”130

[T]he International Society for Heart 

and Lung Transplants only removed 

“mental retardation” [sic] as a 

relative contraindication to heart 

transplantation in the 2016 revision 

of their official guidelines

Organ Transplants and Discrimination Against People with Disabilities 39
The authors of this literature review noted 

that it was difficult to compare studies due to 

differences in sample size, study populations, and 

transplant selection criteria.131 But they concluded 

that “psychiatric patients are an extremely 

heterogeneous group” and the evidence did not 

support “barring patients . . . on the basis of their 

psychiatric illness alone.”132

Patients Who Are HIV-Positive

Organ transplant centers are reluctant to perform 

organ transplants on patients with HIV and, as 

described in Chapter 3, sometimes have explicit 

policies listing the disorder as a contraindication 

to transplant.133 In actuality, however, HIVpositive status does not significantly impact 

the likelihood of medical success. According to 

a 2002 paper arguing in favor of transplanting 

organs into people who are HIV-positive, “all 

published reports of transplantation in HIVpositive patients who are receiving multidrug 

antiretroviral regimens” reported that HIVpositive status did not impact the transplantation, 

nor did the immunosuppressive antibodies taken 

by transplant patients hasten the progression of 

their HIV.134

Post-Operative Care for People with 

Disabilities Receiving Organ Transplants

The impact of disability on a patient’s ability 

to comply with post-operative care is complex 

because some disabilities, particularly psychiatric 

disabilities and I/DD, have characteristics that 

may cause patients difficulty following their 

post-transplant medication regimens unless 

they receive sufficient supports.135 Patients 

with disabilities who receive proper supportive 

services that take into account their specific 

needs and disabilities, however, are perfectly 

capable of following complex postoperative care 

regimens.136

Geraldine Collins-Bride, a nurse practitioner at 

the University of California San Francisco, who 

was interviewed for this report, has provided 

counseling and support to several patients with 

I/DD who sought organ transplants. CollinsBride said that, for transplant candidates with 

I/DD, both the person with I/DD and that 

person’s support system require intensive 

counseling reinforcing the importance of taking 

post-transplant medications consistently.137

She indicated that developing prompts in the 

environment that remind the person with I/DD 

was important and suggested finding an action 

like eating dinner or a mechanism like a weekly 

pill container that may help the person remember 

when to take medication.138

For additional information on what kinds 

of supports people with mental disabilities 

(especially people with I/DD) may need in 

order to successfully adhere to a postoperative 

care regimen, readers can consult the Autistic 

Self Advocacy Network (ASAN)’s guide for 

clinicians139 as well as its Guide to Supports 

Available to Organ Transplant Recipients with 

Disabilities.

140

Ethical Issues and Bioethicist 

Perspectives on Organ Transplants 

for People with Disabilities

There are two primary ethical issues discussed 

by bioethicists and other stakeholders. The first 

is, “What is the proper relationship between 

disability and the allocation of organs?” The 

second is, “Is there a means of allocating 

scarce health care resources, such as organs, 

that does not discriminate on the basis of 

disability?”

40 National Council on Disability
Potential Methods of Allocating 

Organs

■ “Greatest benefit”

■ Donor/recipient match

■ Medical necessity

■ Sickest

■ “First come, first serve”

■ Randomized lottery system

Organ Transplants and Discrimination Against People with Disabilities 41

Ethical Question 1: “What is the proper 

relationship between disability and the 

allocation of organs?”

Most legal theorists and 

philosophers agree that 

because organs are a 

scarce medical resource, 

some form of rationing 

must occur.141 As legal 

scholar David Orentlicher 

stated, “[i]nasmuch as 

we cannot avoid rationing, the question becomes 

how rationing should be implemented.”142

Given that organs must be rationed, some 

bioethicists have argued that some aspects of 

disability, such as the impact of disability on 

quality of life, should be considered when a 

transplant center is attempting to determine 

who they should transplant.143 They argue that 

disability may result in a lower quality of life, 

although not necessarily for all people with 

disabilities.144

But there is no evidence that people with 

disabilities actually experience a lower quality of 

life than people without disabilities. People with 

disabilities tend to self-report that their quality 

of life is the same as people without disabilities, 

regardless of the severity of their disability.145 In 

fact, where people with disabilities do report that 

their disability has some impact on their quality of 

life, it is often related to architectural and societal 

barriers, as well as encountering the belief that 

disability inherently makes them less capable, 

rather than any inherent trait of the disability.146

There is disagreement among stakeholders 

on what exactly “quality of life” is, how to 

measure it objectively, and whether disability 

actually reduces quality of life. Most means 

of attempting to objectively measure “quality 

of life,” such as Quality Adjusted Life Years 

(QALYs), may be based on assumptions about 

people with disabilities’ quality of life made 

by people without 

disabilities and tend 

to limit the definition 

of the concept to 

aspects of physical, 

emotional, and cognitive 

functioning.147 Disability 

Adjusted Life Years 

(DALYs) are another means of attempting to 

objectively measure the impact of disability and/

or health conditions on “quality of life.” DALYs 

add “the number of years of life lost” due to a 

certain disability “to the number of years lived 

with [that] disability” to determine the overall 

burden that disability places on a population 

(for instance, the overall burden of disability 

on the residents of a city).148 Under the DALYs 

framework, the presumption is “that lifetime of 

[people with disabilities] is worth less than that 

of people without disabilities and that [people 

with disabilities] have fewer claims on health 

resources than do people without disabilities. 

The task is to find out how much less” through, 

People with disabilities tend to selfreport that their quality of life is the 

same as people without disabilities, 

regardless of the severity of their 

disability
in part, “compar[ing] the value of extended life 

in people without disabilities with that in [people 

with disabilities].”149

Bioethicist Arthur Caplan stated in his 

interview that the meaning of “quality of life” was 

clear and objective, and that it typically referred 

to mobility, the ability to perform self-care, and 

the ability to form relationships and interact with 

others. Caplan described the components of a 

person’s “quality of life,” therefore, as features 

of life that doctors in the field of rehabilitation 

can try to improve. Nonetheless, patients with 

“locked in syndrome”—disabilities that cause 

a person to lose complete physical control of 

their bodies and therefore access to some of 

what Caplan defines as critical to a good quality 

of life—report having the same quality of life as 

people without disabilities.150

In many cases, therefore, when someone 

states that people with disabilities have a 

lower “quality of life,” this conclusion may 

not be based on an accurate assessment of 

the quality of life of people with disabilities. 

Bioethicist Julian Savulescu lists intellectual 

disability, infertility, and reduced opportunities 

for independent living and employment 

as characteristics of Down syndrome that 

“make . . . lives worse,” without examining 

social causes or whether people with these 

characteristics actually value their lives less.151

Bioethicist Joe Stramondo explains that this 

argument, known as “The Standard View,” is 

held by most people in the general population,152

which sees disability as inherently negative for 

all people that experience it.153

The Standard View may result from 

excessive reliance on a deficit-based “medical 

model” of disability, which frames disabilities 

as problematic illnesses or ailments to be 

cured.154 The medical model tends to frame the 

disability itself as the “root cause” of disabilityrelated disadvantages a person experiences, 

and assumes that the way to remedy those 

disadvantages is to cure the disability, 

rather than to address social prejudices or 

systematic barriers (for example, by offering 

services needed to increase opportunities for 

employment or to make independent living 

possible).155 When a disability cannot be cured, 

therefore, overreliance on the medical model 

may lead people to assume that the person’s 

quality of life is automatically lower than that of 

a person without a disability.

These views also may be based on 

widespread beliefs that people with disabilities 

have less to contribute to society and therefore 

should receive lower priority for a scarce resource 

such as organs.156 Such a view assumes that 

disability automatically reduces the contributions 

a person could make to society. Philosopher John 

Kilner states that such a view “robs people of any 

unconditional worth . . . and defines them purely 

in terms of their usefulness to others.”157 This is 

also inconsistent with the widespread societal 

view in the United States that each individual is 

of equal worth.158

Ethical Question 2: “Is there a means 

of allocating scarce healthcare 

resources, such as organs, that does 

not discriminate against people with 

disabilities?”

NCD’s review of relevant ethical and medical 

literature found no clear answer to this 

question. Some people feel that scarce medical 

resources should be allocated based on who 

42 National Council on Disability
would receive the greatest benefit from the 

resource.

159 Note, however, that the meaning 

of the phrase “greatest benefit” may be 

ambiguous. The “greatest benefit” could refer 

to the greatest improvements in “quality of life” 

from receiving the resource.160 But as noted 

under “Ethical Question 1,” many methods 

of measuring “quality of life” and how much 

it is improved by treating a person—such as 

QALYs—discriminate against people with 

disabilities.

Although they may use different definitions 

of “greatest benefit,” bioethicists often consider 

how a person will benefit from an organ 

transplant in considering how to allocate such 

a scarce resource. For 

example, bioethicist 

Arthur Caplan has 

argued that “severely 

intellectually impaired” 

children and people 

“who are almost in a 

coma” should not be 

considered for organ 

transplants and that 

60-year-old individuals should be prioritized 

lower than 20-year-old individuals because 

in his view, the 20-year-old individuals would 

benefit from the organ for longer.161 In other 

words, he believes that organs should be 

allocated where they will prolong lives for the 

longest time.162 Caplan nonetheless noted the 

underrepresentation of women, older people, 

people of color, and people with disabilities 

among organ transplant recipients and feels 

that this underrepresentation may raise 

concerns of equity.163 This reflects the concern 

of other bioethicists who worry that factors 

such as socioeconomic status and race have 

an impact on perceived “quality of life” and 

the degree to which a person benefits from an 

organ transplant.164

Ethicists and stakeholders disagree as 

to whether it is unjust to prioritize people 

expected to live longer after a particular organ 

transplant over people whose co-occurring 

disabilities, conditions, or age may shorten 

their lifespan.165 For instance, as discussed 

in Chapter 2, some disabilities or chronic 

illnesses, such as Down syndrome, may 

reduce a person’s life expectancy due to cooccurring conditions such as a compromised 

immune system, leading to these people 

receiving lower 

priority for a transplant 

even independent of 

presumptions about 

their quality of life.166

But as John Kilner 

reported in a study 

of 453 United States 

medical directors 

of renal dialysis and 

transplant centers, these people view the 

degree of “medical benefit” a person will 

receive from a transplant as important.167

In an interview for this report series, 

bioethicist Joe Stramondo contemplated how 

he would allocate a scarce resource such as 

organs:

Basing [organ allocation] on [life expectancy] 

would build in a disadvantage to certain 

groups of people. Maybe there should be a 

thing where there’s a floor beneath which 

I wouldn’t want to drop. Maybe it should 

Ethicists and stakeholders disagree 

as to whether it is unjust to prioritize 

people expected to live longer 

after a particular organ transplant 

over people whose co-occurring 

disabilities, conditions, or age may 

shorten their lifespan

Organ Transplants and Discrimination Against People with Disabilities 43
be 5 years. Where we go, “Anybody that 

can live 5 years with the organ ought to 

have an equal shot at the treatment and 

[be] entered into the lottery.” I do have 

an intuition that if there’s a heart, and the 

person won’t survive, they shouldn’t get 

the heart. It should go to the person who 

will live 5, 10, or 15 years with that heart 

and not the person who will only live 6 

months.

Bioethicist John Harris disagrees, arguing 

that allocating scarce resources on the basis of 

how long the treatment will extend the patient’s 

life is ageist and discounts the intrinsic value 

of a person’s life to them, regardless of how 

long they have left to 

live.168 This view is more 

in line with the views 

of most individuals 

NCD interviewed 

for this report. Mrs. 

Rivera, the mother of 

Amelia Rivera, argued 

that the allocation of scarce resources should 

only be based on whether someone is 

medically capable of receiving a transplant. 

Marty Ford, a representative of The Arc, a 

nonprofit organization that serves people with 

developmental disabilities, felt that organ 

transplant decisions should strictly be based 

on whether there was a match between the 

donated organ and the recipient. Ms. CollinsBride, the nurse practitioner, argued that the 

“medical necessity” of the transplant should be 

considered above all else.

UNOS/OPTN’s current methods for allocating 

donated organs prioritize the sickest patients 

first and those who have been on the waiting 

list the longest, according to a “first come, first 

served” policy.169 Additionally, UNOS/OPTN’s 

computer system automatically screens out 

incompatible candidates for transplant when 

creating the waiting list to determine allocation 

of a donor organ.170 As explained in Chapter 1, 

UNOS/OPTN’s guidelines and point system 

are specific to each organ, but the guidelines 

are not disability-specific, focusing instead 

on specific medical aspects of transplanting 

each organ.

Organs could alternatively be allocated using 

a method that is completely randomized, bearing 

no relationship to either health or quality of 

life, such as a lottery system.171 While lotteries 

are fundamentally 

nondiscriminatory 

(since they do not value 

people with disabilities 

over people without 

disabilities), the use of 

lotteries alone would 

create unjust results.172

For instance, they might result in organs going 

to people who only just got onto the organ 

transplant waiting list, which may not be 

equitable because it may mean that a less sick 

person will be prioritized above a much sicker 

person. According to ethicist Govind Persad, 

use of a lottery alone would also fail to consider 

medical factors relevant to the transplant, such as 

how long someone can be expected to live after 

that transplant.173 He argues it might be unethical 

to prioritize someone who would live only 

4 months after transplant (for medical reasons) 

over someone who might live for 40 years after 

transplant.174

UNOS/OPTN’s current methods for 

allocating donated organs prioritize 

the sickest patients first and those 

who have been on the waiting list 

the longest

44 National Council on Disability
Finally, organs could be allocated using a “first 

come first serve” system,” in which whoever 

managed to get onto the waiting list first would 

receive the organ.175 But this would likely mean 

that people with more knowledge of how the 

transplant system works would come out ahead 

of less-informed people.176 Persad argues that the 

people best positioned to benefit from a purely 

“first come first serve” system are the wealthy, 

those who can travel to a transplant center 

more quickly, and those who have no additional 

responsibilities such as 

employment requiring 

them to be in a specific 

place at a specific time 

or childcare concerns.177

A “first come first serve 

system” alone would 

also disadvantage many 

people with disabilities, 

who may have more 

difficulty travelling to a 

transplant center due to 

accessibility issues, or 

more difficulty navigating complex bureaucratic 

systems due to cognitive or other limitations.

Existing Medical and Ethical 

Guidelines for Organ Transplants

UNOS’s Ethics Committee, under the guidance 

of the US Department of Health and Human 

Services, has created a set of nonbinding ethical 

allocation principles titled “Ethical Principles 

in the Allocation of Human Organs.”178 The 

American Medical Association has similarly 

created a nonbinding “Code of Medical Ethics” 

on organ transplantation.179 The degree to which 

either set of guidelines is followed by organ 

transplant centers or OPOs is unknown, as 

NCD found no sources describing the extent to 

which organ transplant center policies comport 

with the guidelines. In other contexts, such 

as determination of brain death, the level of 

adherence to guidelines varies widely among 

hospitals180 and it seems unlikely, given the 

variety in transplant policies among hospitals, 

that adherence in the organ transplant context is 

much different.

Nevertheless, this guidance by UNOS 

itself, as well as that 

from the American 

Medical Association, 

may influence how 

organ transplant and 

procurement centers 

allocate organs. UNOS’s 

guidelines state that 

allocation systems should 

exclude considerations 

of the social worth of 

individuals, and that 

they should “rule out 

excluding individual members of a social group 

or giving them low priority simply because the 

group has statistically poorer outcomes.”181

But the guidelines also state that “[f]actors 

relevant to access to the transplant waiting list, 

as distinguished from medical criteria used in 

the equitable allocation of organs . . . include 

psychosocial factors (e.g., financial and social 

support, patient adherence).”182 Allowing organ 

transplant centers to consider the financial and 

social support available to the patient when 

determining who will end up on the transplant 

waiting list undermines UNOS’s claims that 

members of certain social groups should not 

UNOS’s guidelines state that 

allocation systems should exclude 

considerations of the social worth 

of individuals, and that they should 

“rule out excluding individual 

members of a social group or giving 

them low priority simply because 

the group has statistically poorer 

outcomes.

Organ Transplants and Discrimination Against People with Disabilities 45
be ruled out just because those groups have 

statistically poorer outcomes.

The American Medical Association’s Code 

of Medical Ethics states that physicians should 

ensure “organs for transplantation are allocated 

to recipients on the basis of ethically sound 

criteria, including but not limited to likelihood of 

benefit, urgency of need, change in quality of 

life, duration of benefit, and, in certain cases, 

amount of resources required for successful 

treatment.”183 As stated above, ethicists disagree 

on the degree and the manner to which likelihood 

of benefit should influence organ allocation 

decisions. Additionally, the American Medical 

Association’s Code of Medical Ethics argues that 

transplant physicians and OPOs should study 

whether the benefits of financial incentives for 

organ donation outweigh the potential ethical 

issues (such as the voluntariness of the donation 

or a reduction in the number of altruistic organ 

donations).184 These statements rightly consider 

the possibility of coercive organ donations and 

may make the exploitation of people with newly 

acquired injuries less likely (as described in 

Chapter 1).

The ethical considerations involved in this 

subject are complex, are the subject of much 

debate, and have not been resolved. While NCD 

does not at this time take a position on this 

ethical debate, two things are clear. First, organs 

must be allocated under a system that prevents 

discrimination on the basis of disability. Second, 

that allocation system should avoid criteria, such 

as QALYS, that tend to screen out people with 

disabilities by necessarily finding that people with 

disabilities will not receive the same medical 

benefit from organ transplants as people without 

disabilities.

46 National Council on Disability
Chapter 3: Federal Laws, Regulations, and Guidance 

and Their Impact on Organ Transplants for People 

with Disabilities

The Americans with Disabilities Act

T

he Americans with Disabilities Act (ADA) 

prohibits discrimination on the basis of 

disability in the organ transplantation 

process. Public hospitals and transplant centers 

are covered by Title II of the ADA, which 

provides that any “public entity,” including “any 

department, agency . . . or other instrumentality 

of a State or States or local government,”185

is prohibited from discriminating against an 

individual with a disability 

on the basis of that 

disability.186 Public 

entities are likewise 

prohibited from excluding 

qualified individuals from 

participation in or denying 

them the benefits of 

the services, programs, 

or activities of a public 

entity on the basis of their disability.187

Privately operated healthcare establishments, 

including hospitals and transplant centers, are 

also typically covered by the ADA because they 

are “public accommodations” under Title III.188

Privately operated healthcare establishments, 

with the exception of some religiously operated 

healthcare systems and facilities,189 are precluded 

from “the imposition or application of eligibility 

criteria that screen out or tend to screen out 

an individual with a disability or any class of 

individuals with disabilities from fully and equally 

enjoying any goods, services, facilities, privileges, 

advantages, or accommodations.”190 Eligibility 

criteria that discriminate based on disability may 

be used only when such criteria are “necessary 

for the provision of the goods, services, facilities, 

privileges, advantages, or accommodations being 

offered.”191

The ADA requires that organ transplant 

centers make reasonable modifications to their 

policies, practices, and 

procedures to ensure 

equal opportunity for 

people with disabilities.192

Modifications must 

be made unless 

they would cause a 

fundamental alteration 

of the transplant center’s 

services.193 Reasonable modifications must be 

considered on an individualized, case-by-case 

basis, rather than through generalized decision 

making, in order to level the playing field for 

people with disabilities.194

Because the ADA requires individualized 

consideration of disability, it requires an 

individualized assessment of every person with a 

disability seeking an organ transplant.195 The ADA 

seeks to eliminate “barriers caused by the use 

Because the ADA requires 

individualized consideration 

of disability, it requires an 

individualized assessment of every 

person with a disability seeking an 

organ transplant

Organ Transplants and Discrimination Against People with Disabilities 47
of stereotypical assumptions that are ‘not truly 

indicative of the individual ability of [individuals 

with disabilities] to participate in, and contribute 

to, society.’”196 Decisions concerning organ 

allocation therefore cannot be based on blanket 

assumptions regarding a person’s disability.197

This includes unfounded assumptions that a 

person’s disability may make him or her less able 

to comply with postoperative requirements, or 

that having a disability lowers the quality or value 

of a person’s life.198 In other words, physicians 

must weigh the medical status of each individual 

patient and that patient’s ability to comply with 

postoperative requirements while also making 

reasonable modifications to their policies and 

practices, including 

assisting people to 

secure additional 

support services that 

may be needed.199

Reasonable 

modifications in this 

context may include the 

provision of a variety of 

supports or services. 

Geraldine Collins-Bride, a nurse practitioner who 

was interviewed by NCD for this report, stated 

that important modifications may include a 

consultation with an individual seeking transplant 

and that person’s family or other support network 

to determine who will assist the individual 

post-transplant.200 Additional modifications 

include identifying any prompts that may help 

the individual adhere to the post-transplant 

medication schedule and frequent post-operative 

follow-up with the patient, as discussed in 

Chapter 2.201 Reasonable modifications may 

also require referrals to social workers and 

state and community agencies so patients can 

obtain support services,202 as discussed above, 

including a home health aide, visiting nurse, 

or personal care attendant, or the utilization 

of supported decision making. Because the 

ADA’s reasonable modifications mandate is 

broad, it may be interpreted to require that a 

transplant center assist an individual with a 

disability seeking a transplant in securing these 

services and may even require the transplant 

center to pay for such services under certain 

circumstances, and to the extent that the cost is 

reasonable.203

Section 504 of the Rehabilitation 

Act of 1973

Section 504 prohibits 

discrimination against 

people with disabilities 

in programs or activities 

receiving federal funding, 

and imposes virtually the 

same obligations as the 

ADA does.204 Section 504 

applies not only to 

healthcare organizations 

that are instrumentalities of the state or local 

government, but also to “an entire corporation, 

partnership, or other private organization, or an 

entire sole proprietorship . . . which is principally 

engaged in the business of providing . . . health 

care.”205 Because most hospitals, transplant 

centers, and other healthcare facilities are 

recipients of Medicare and Medicaid funds, 

or federal subsidies under the Affordable 

Care Act, they are subject to Section 504’s 

antidiscrimination provision,206 which extends 

to “all the operations of” a program or activity, 

“any part of which is extended Federal financial 

assistance.”207

Because most hospitals, transplant 

centers, and other healthcare 

facilities are recipients of Medicare 

and Medicaid funds, or federal 

subsidies under the Affordable Care 

Act, they are subject to Section 504’s 

antidiscrimination provision

48 National Council on Disability
Section 1557 of the Patient 

Protection and Affordable Care Act

Section 1557 is the nondiscrimination provision 

of the Affordable Care Act, and prohibits 

discrimination on the basis of race, color, 

national origin, sex, age, or disability in certain 

health programs or activities, including any 

health program that receives funding from 

HHS or that HHS administers.208 Section 1557 

therefore applies to UNOS/OPTN. Section 1557 

may also apply to organ transplant centers to 

the extent that those transplant centers receive 

federal financial assistance from HHS.209

HHS’s UNOS 

Guidelines

The Federal Government 

must also comply with 

Section 504 in its own 

programs and activities 

concerning organ 

transplantation, including 

OPTN and UNOS.210

While nothing in UNOS’s organ transplant 

guidelines is inconsistent with the ADA, the 

guidelines do not explicitly state how disability 

should be considered within the context of 

organ transplantation.211 Instead, the UNOS 

organ transplant guidelines provide only that 

the allocation of organs should be based on 

“sound medical judgment,” “promote patient 

access to transplantation,” and that the “criteria 

for determining suitable transplant candidates” 

should be “expressed, to the extent possible, 

through objective and measurable medical 

criteria.”212 These guidelines arguably support 

the individualized assessment required by the 

ADA, and do not appear to discriminate on the 

basis of disability. Consistent with the ADA’s 

nondiscrimination requirements, the UNOS/

OPTN Ethics Committee has taken the position 

that “patients with disabilities should not be 

excluded from consideration for transplant solely 

by virtue of their disability.”213

Under both the ADA and Section 504, as 

well as the UNOS guidelines, therefore, an 

individual may not be excluded from an organ 

transplant waiting list solely because of a 

disability, or because of generalized assumptions 

surrounding a disability. But as discussed in the 

section below, disability-based discrimination has 

continued despite the ADA, Section 504, and 

UNOS guidelines.

Case Law 

and Guidance 

Regarding Organ 

Transplantation 

and Federal Law

NCD is unaware of any 

published federal or 

state court decisions 

addressing disability discrimination under 

federal law in the organ transplantation context. 

Over the years, however, both the Department 

of Health and Human Services’ (HHS) Office 

for Civil Rights (OCR) and the Department 

of Justice (DOJ) Civil Rights Division, have 

addressed a number of complaints alleging 

discrimination on the basis of disability and 

have provided technical assistance to covered 

entities to help ensure compliance with their 

legal responsibilities under federal civil rights 

laws. Most recently, OCR is providing technical 

assistance to the University of North Carolina 

Health Care system (UNC) in the ongoing 

development of its transplant eligibility policy 

Section 1557 therefore applies to 

UNOS/OPTN. Section 1557 may also

apply to organ transplant centers 

to the extent that those transplant 

centers receive federal financial 

assistance from HHS

Organ Transplants and Discrimination Against People with Disabilities 49
after working with UNC to ensure an individual 

with an intellectual disability was deemed 

eligible to be considered for placement on the 

transplant waiting list. In its press release, OCR 

noted that excluding people from access to 

organ transplants on the basis of “stereotypes 

about persons with disabilities” is against 

the law.214

The lack of court decisions and limited agency 

decisions addressing discrimination against 

people with disabilities in the organ transplant 

process likely reflects the following factors that 

will be explored in this section: (1) the length 

of time it takes to pursue discrimination claims 

under federal law; (2) the fact that people with 

disabilities who are denied organ transplants 

may not realize that they 

have been subjected to 

illegal discrimination; and 

(3) the lack of federal 

guidance in this area.

First, the absence 

of case law concerning 

discrimination for 

organ transplants is likely tied to the length of 

time it takes to pursue a claim under federal 

law, where court proceedings can often take 

months or even years. Moreover, it is not 

hard to imagine why individuals dealing with 

life-threatening conditions might avoid the 

challenges of pursuing litigation.215 This is 

precisely what happened to Lief O’Neill, a 

high schooler with autism who was initially 

denied a heart transplant in Oregon and who 

eventually received one in California.216 As his 

mother described in her testimony regarding 

the importance of enacting a state law in 

Oregon to supplement federal law, Lief was 

far too ill to pursue a federal claim challenging 

the discriminatory nature of the denial of his 

transplant.217

Second, people with disabilities who are 

denied organ transplants may not realize 

that they have been subjected to illegal 

discrimination. Misty Cargill, a woman with 

an intellectual disability, was denied a kidney 

transplant in a letter that was only 39 words long 

and made no reference to any of the factors 

related to her denial.218 If her caseworker had 

not called the hospital to inquire further, she 

may never have known that there were even 

discriminatory motives at play in the decision, 

and that the hospital had decided on the basis 

of her disability alone that she did not have 

the mental competency to make an informed 

decision to choose a 

transplant.219 This hidden 

discrimination in the 

organ transplantation 

process can also be 

difficult to address in a 

legal challenge where 

it extends beyond the 

denial of a transplant itself, as when Lief O’Neill 

was not informed that an LVAD could extend his 

life while he waited for a transplant because of 

his disability.220

In other situations, and as described in 

Chapter 1, the informal manner in which 

organ transplant eligibility decisions are often 

made makes it difficult to determine whether 

discrimination occurred.221 The inconsistent 

standards and varying informal policies that 

different organ transplant centers apply when 

evaluating people with disabilities only make 

this discrimination harder to notice, let alone 

to legally challenge.222 Medical providers 

themselves also may be unaware of the ways in 

[T]he informal manner in which 

organ transplant eligibility decisions 

are often made makes it difficult to 

determine whether discrimination 

occurred

50 National Council on Disability
which civil rights laws prohibit discrimination on 

the basis of disability when determining eligibility 

for organ transplantation. Transplant teams 

“[a]cting under their own perceived subjective 

clinical judgment in complicated medical 

scenarios” may not even be aware that civil 

rights laws apply.223

Finally, the lack of federal guidance concerning 

the civil rights laws that apply to the organ 

transplantation process may contribute to the 

absence of cases in this process. DOJ has 

authority to interpret and enforce Titles II224

and III225 of the ADA,226 Under Executive Order 

12250, DOJ is also authorized to coordinate the 

consistent implementation of Section 504 of 

the Rehabilitation Act (Section 504) across the 

Federal Government. 

HHS has the authority to 

investigate complaints 

related to “the provision 

of health care and social 

services” under Title II of 

the ADA.227 HHS also has 

authority to promulgate 

regulations, issue technical assistance and 

guidance, and enforce the obligations of 

Section 504 with respect to entities receiving 

federal funding from HHS and HHS programs 

and activities.228 Finally, HHS has authority 

under Section 1557 of the Affordable Care Act 

(Section 1557) to promulgate regulations, issue 

technical assistance and guidance, and enforce 

obligations with respect to health programs and 

activities that receive federal funding from HHS 

as well as programs or activities administered by 

HHS under Title I of the Affordable Care Act (Title 

I) and any program or activity administered by 

any entity established under Title I.229 The ADA 

applies to organ transplant centers and hospitals. 

Section 504 and Section 1557 also apply to organ 

transplant centers and hospitals that receive 

funding from HHS and programs conducted by 

the federal government, including its involvement 

in the organ transplantation process. But there 

is no specific guidance as of the date of this 

report from DOJ or HHS describing what the 

ADA, Section 504, or Section 1557 require with 

respect to people with disabilities seeking organ 

transplants. The February 2019 news release 

about the complaint resolved by HHS is the most 

recent example of the agency’s application of civil 

rights protections in the organ transplant process.

Some have theorized that there are no cases 

applying federal law to disability discrimination 

in the organ transplant context due to “the 

accepted discretion 

allowed to physicians”230

or the reluctance of 

courts to apply the 

ADA and its reasonable 

modification mandate 

to health care.231 This 

argument is unfounded, 

and the Supreme Court has made clear that 

the ADA applies to medical decision making.232

The argument stems from old cases brought 

under Section 504, largely prior to passage of 

the ADA, such as the 1980s “Baby Doe cases” 

about newborns with disabilities233 and In re 

Baby K.

234 In those cases, courts were attempting 

to address the allocation of scarce healthcare 

resources.235

For instance, in United States v. University 

Hospital, one of the leading Baby Doe cases, a 

Second Circuit panel’s decision rested in part on 

acceptance of the argument that Section 504 

only prohibits discrimination “where the 

individual’s handicap [sic] is unrelated to, and 

[T]he lack of federal guidance 

concerning the civil rights laws that 

apply to the organ transplantation 

process may contribute to the 

absence of cases in this process

Organ Transplants and Discrimination Against People with Disabilities 51
52 National Council on Disability

thus improper to consideration of, the services 

in question.”236 The court went on to find that 

discrimination is consequently warranted 

in the medical context because “where 

medical treatment is at issue, it is typically 

the handicap [sic] itself that gives rise to, or at 

least contributes to, the need for services.”237

The dissent saw it differently, emphasizing that 

Section 504 was patterned after other civil rights 

laws and “‘constitutes the establishment of a 

broad government policy that programs receiving 

federal financial assistance shall be operated 

without discrimination on the basis of handicap 

[sic].’”238 The government’s aim in preventing 

discrimination on the basis of disability, according 

to the dissent, was not to “override a medical 

judgment” but rather to determine “whether 

a judgment in question is a bona fide medical 

judgment.”239

The court in In re Baby K did override the 

decision-making authority of physicians. The 

physicians in In re Baby K were opposed 

to providing care that had “no therapeutic or 

palliative purpose [and was thus] medically 

unnecessary and inappropriate” to Baby K, a baby 

born with anencephaly, a condition where a child 

is born without portions of the brain and skull.240

The hospital consequently wanted to be excused 

from any obligation to provide emergency care 

under the Emergency Medical Treatment and 

Active Labor Act (EMTALA), Section 504, and 

the ADA.241

The court rejected the hospital’s arguments.242

The Fourth Circuit, on appeal, recognized the 
difficulty in scrutinizing medical decision making 

but affirmed the judgment, explaining that “[w]

e recognize the dilemma facing physicians who 

are requested to provide treatment they consider 

morally and ethically inappropriate, but we cannot 

ignore the plain language of the statute because 

to do so would transcend our judicial function.”243

Even if the Baby Doe and In re Baby K cases 

could be understood to create any ambiguity 

about the applicability of disability discrimination 

laws to the organ transplant process, any doubt 

was erased by the Supreme Court’s 1998 

landmark ruling in Bragdon v. Abbott, which 

held that the ADA applies to medical decision 

making.244 In Bragdon, the Court found that HIV is 

a disability under the ADA, that the plaintiff was 

therefore protected from denial of treatment on 

the basis of his disability, 

and that the plaintiff must 

be afforded reasonable 

modifications to practices 

and procedures in 

order to receive that 

treatment.245 The Court further held that while 

a treating physician has the right to determine 

whether a treatment or accommodation is 

unreasonable, such an “assessment must be 

based on medical or other objective evidence” 

and not on the physician’s belief alone.246 As 

the Court elaborated, the belief of a medical 

professional, “even if maintained in good 

faith,” warrants “no special deference,” and a 

medical professional who denies treatment or 

accommodation to a person with a disability 

is therefore liable under the ADA unless the 

decision can be determined to be “reasonable in 

light of the available medical evidence.”247

Other courts have reached similar conclusions, 

such as the Delaware District Court in 1993, 

holding that decisions regarding refusal of 

treatment must be based on “medical reasons” 

and that a hospital may be held liable if it is 

aware of the discriminatory basis for the refusal 

and does not intervene.248 Even the Baby K

court—which did override the decision making of 

physicians—applied Section 504 and the ADA, as 

well as the EMTALA in holding that Baby K must 

receive treatment.249

A DOJ regulation likewise concludes that the 

ADA is applicable to medical decision making, 

and states that a provider may only refer patients 

to another facility for treatment when the 

treatment sought is not within the provider’s 

specialty and “the referring provider would 

make a similar referral for an individual without 

a disability who seeks or requires the same 

treatment or services.”250

A 1998 settlement 

agreement between DOJ 

and George Washington 

University (GWU) 

Medical Center regarding 

the denial of treatment to a patient with HIV also 

clarified that disability should not be factored into 

medical decision making. Under the agreement, 

GWU Hospital was required to issue a policy 

stating that, “medically appropriate treatment 

(as determined by reasonable medical judgment 

based on current medical knowledge) shall not be 

denied or withheld on the basis of the patient’s 

infectious disease status.”251

Do Organ Transplant Centers Follow 

Federal Law?

The extent to which organ transplant centers 

follow federal disability nondiscrimination 

laws by providing reasonable modifications to 

people with disabilities and otherwise avoiding 

A DOJ regulation likewise 

concludes that the ADA is applicable 

to medical decision making 

Organ Transplants and Discrimination Against People with Disabilities 53
disability-based discrimination in organ allocation 

decisions is difficult to track, particularly given 

that discrimination against people with disabilities 

often occurs informally.252 That said, as described 

below, it is apparent that some organ transplant 

centers do not comply with the antidiscrimination 

requirements of the ADA and Section 504 when 

considering transplant candidates with disabilities.

As examined in detail in Chapters 1 and 2, 

many organ transplant centers may view 

certain disabilities as absolute or relative 

contraindications to organ transplants, or be 

unaware that the medical outcomes of organ 

transplants for people with disabilities are no 

worse than those for people without disabilities. 

These biases among 

medical professionals 

make it unlikely that 

all providers are 

following federal law by 

conducting individualized 

assessments of the 

impact of transplant 

candidates’ disabilities 

or considering reasonable modifications and 

supports available to each person in making 

determinations about what patients should be 

placed on the waitlist for an organ transplant.

This existence of an underlying bias against 

people with disabilities is apparent on the 

websites of many organ transplant centers, 

even in states with their own antidiscrimination 

laws.253 St. Joseph Hospital in California lists 

transplant eligibility criteria that are in plain 

conflict with federal and California law, stating 

that ““[k]idney transplantation is usually not 

recommended for patients who have . . . 

[i]mmune deficiency disease [or] [p]sychosocial 

conditions or situations that interfere with posttransplant care or medication management.”254

The University of Pennsylvania’s Penn Medicine 

states that its lung transplant program “does not 

list or transplant patients who have . . . HIV/AIDS, 

[d]ocumented history of repeated medical noncompliance, [or] [s]evere and on-going psychiatric 

problems that interfere with self-care.”255 Its 

kidney program similarly lists “active and 

unstable psychiatric illness” among its absolute 

contraindications to transplant.256 The University 

of Pittsburgh Medical Center does not even allow 

evaluation for liver transplant until the person 

seeking evaluation is “free of . . . [d]isabling 

psychiatric conditions and [d]ocumented medical 

non-compliance.”257

While some organ 

transplant centers 

do not specifically 

mention psychiatric or 

developmental disabilities 

as relative or absolute 

contraindications to 

transplants, they list 

medical noncompliance 

among the contraindications to transplant, 

and do not indicate that the transplant center 

will consider—as required by federal law—any 

supports that the patient has or is eligible to 

receive.258 For instance, New Jersey’s Barnabus 

Health lists “[s]evere psychiatric illness, 

uncontrolled with medication” and prior chronic 

noncompliance with medication or treatment 

regimens as not just relative, but absolute 

contraindications to kidney transplant.259

In other cases, whether organ transplant 

centers discriminate may be difficult to discern 

from the face of their policies. For example, 

Stanford University’s evaluation criteria for older 

adults consider an “inability to care for oneself 

This existence of an underlying 

bias against people with disabilities 

is apparent on the websites of 

many organ transplant centers, 

even in states with their own 

antidiscrimination laws

54 National Council on Disability
without assistance” as a relative contraindication 

for an organ transplant.260 Unless Stanford also 

weighs the supports available to the individual 

when making determinations about organ 

transplants, this policy of denying transplants 

to older adults who cannot care for themselves 

independently arguably violates the ADA and 

California’s own antidiscrimination law.261

Transplant centers in New York have similarly 

problematic guidelines for the evaluation of 

transplant candidates. For instance, Columbia 

University’s Center for Advanced Lung Disease 

and Transplantation states 

that individuals should have 

a “[h]istory of compliance 

with follow-up visits and 

medications” and “[n]

o significant and active 

psychiatric problems.”262

In Florida, the University 

of Florida Health’s 

transplant center lists 

discriminatory criteria 

as not only relative, but 

absolute contraindications 

for transplants, stating 

that patients must have 

“[c]apacity to perform daily activities without 

assistance . . . [and p]sychosocial health in 

good standing” in order to receive a kidney 

transplant.263 Tampa General Hospital lists 

“AIDS or HIV-positive diagnosis, [m]ental illness, 

including schizophrenia and psychosis . . . 

[and a] history of noncompliance for medical 

appointments, medical advice, and/or medical 

regimens” among contraindications that “can 

preclude” the hospital from listing someone 

for a liver transplant.264 The hospital has similar 

contraindications for kidney transplant.265 Several 

other states,266 including Arizona, Colorado, 

Kentucky, and South Carolina have transplant 

centers that list medical noncompliance,267

HIV,268 and/or a history of, as opposed to current, 

substance use disorder269 among their relative 

contraindications to transplant.

The resolution of the recent complaint filed 

with OCR against UNC Health Care, discussed 

in the previous section, further demonstrates 

that organ transplant centers sometimes fail 

to adhere to federal law.270 Disability advocates 

have also found that organ transplant centers 

may ignore federal 

law unless and 

until their conduct 

is challenged. For 

example, prior to the 

debate in Maryland 

surrounding proposed 

antidiscrimination 

legislation (which 

became law in 

2015), the organ 

transplantation 

eligibility policies 

of the University of 

Maryland Medical 

Center’s (UMMC) transplant center listed “severe 

psychiatric disease, severe mental retardation 

[sic], and unresolvable psychosocial problems” 

as “absolute contraindications for renal 

transplants.”271 UMMC removed “severe mental 

retardation” [sic] from these guidelines after 

advocates raised the possibility that they were 

violating the law, but kept “severe psychiatric 

disease” and “unresolvable psychosocial 

problems” listed as absolute contraindications 

to transplant.272 None of those guidelines are 

currently on the transplant program’s website.273

In Florida, the University of 

Florida Health’s transplant center 

lists discriminatory criteria as 

not only relative, but absolute 

contraindications for transplants, 

stating that patients must have 

“[c]apacity to perform daily 

activities without assistance 

[and p]sychosocial health in good 

standing” in order to receive a 

kidney transplant

Organ Transplants and Discrimination Against People with Disabilities 55
56 National Council on Disability
Chapter 4: State Laws Prohibiting Discrimination 

Against People with Disabilities in Organ Transplants

A Brief Overview of State Laws

Nine states have enacted legislation 

banning organ transplant discrimination 

and two states—New York274 and 

Washington275—are considering such a 

ban and have legislation pending. The nine 

states that have passed a law banning organ 

transplant discrimination are California, New 

Jersey, Maryland, Massachusetts, Oregon, 

Delaware, Ohio, Kansas, and Pennsylvania. 

While California was the first state to enact 

such a law in 1996, the majority of state laws 

have been enacted within the last six years. No 

published cases have applied these laws, likely 

due both to the reasons set forth in Chapter 2 

explaining the absence of federal case law, and 

because the majority of these laws are very 

recent. This chapter provides an overview of 

these laws before examining the oldest state 

law in California, and one of the newer laws in 

Maryland.

California’s Uniform Anatomical Gift Act was 

revised in 1996 to prohibit discrimination on 

the basis of disability.276 Under California’s law, 

eligibility for a transplant cannot be determined 

on the basis of the patient’s disability, except 

in instances where the disability is “medically 

significant” to the success of the transplant.277

The patient also cannot be required to be 

States with Organ Transplant 

Antidiscrimination Laws

■ California

■ Delaware

■ Kansas

■ Maryland

■ Massachusetts

■ New Jersey

■ Ohio

■ Oregon

■ Pennsylvania

Organ Transplants and Discrimination Against People with Disabilities 57

able to live independently as a condition 

of the transplant provided that the patient 

has an adequate support system to ensure 

postoperative needs are met.278 The act also 

provides for priority review, meaning that courts 

place cases on a fast track calendar to resolve 

disputes quickly.279 The law applies to every 

part of the organ transplant process involving 

physician or transplant team discretion, including 

referrals, evaluation, and placement on the 

transplant waiting list.280 California’s statute 

is discussed in more detail in the section, 

“California’s Organ Transplant Nondiscrimination 

Law,” below.

New Jersey passed its antidiscrimination 

law in 2013281 in response to the case of 

Amelia Rivera, a young girl who was denied a 
kidney transplant when she was 3 years old 

because she has Wolf-Hirschhorn syndrome, a 

genetic condition that can cause physical and 

mental disabilities.282 The legislation “follow[ed] 

California’s approach” in several ways.283 As in the 

California statute, the ability to live independently 

is not a requirement for transplant, and priority 

review is provided to resolve disputes.284

Unlike New Jersey and California before it, 

Maryland did not enact its 2015 antidiscrimination 

law285 in response to a specific case of 

discrimination against an individual with a 

disability.286 Instead, Maryland worked with a 

coalition of advocacy organizations and used 

model legislation drafted by ASAN as a basis 

for its law.287 Maryland’s statute is discussed in 

more detail in the section, “Maryland’s Organ 

Transplant Nondiscrimination Law.”

Passed in 2016, Massachusetts’ 

antidiscrimination bill288 allows the state’s 

attorney general to take civil action against 

violators of the statute and imposes fines of up 

to $50,000 for the first violation and $100,000 

for subsequent violations.289 As in Maryland, 

the law was not a reaction to an instance of 

discrimination against a particular person.290

In 2017, Oregon’s state legislature unanimously 

approved House Bill 2839,291 which prohibits 

discrimination in organ transplants on the basis of 

disability, except where the disability would make 

the transplant unlikely to succeed.292 Advocates 

and providers alike supported the bill, which not 

only prohibited discrimination on the basis of 

disability and provided priority review to resolve 

disputes, but “[clarified] official state policy for 

hospitals and transplant centers” by emphasizing 

the obligation to follow the law.293 Oregon’s bill 

also provided detail regarding the equitable relief 

that can be sought, including “auxiliary aids and 

services,” “the modification of a policy, practice 

or procedure of a covered entity,” and making 

facilities “readily accessible to and usable by a 

qualified individual with a disability.”294

In 2017, Delaware passed a law prohibiting 

discrimination in the organ transplant process 

on the basis of a person’s disability unless it 

is “medically significant” to the success of 

the transplant, as determined following an 

individualized assessment by a physician.295

As with other similar state laws, the ability 

to comply with postoperative requirements 

is not disqualifying if an “individual has the 

necessary support system to assist the 

individual in complying with post-transplant 

medical requirements.”296 The law also 

echoes the ADA, requiring entities to “make 

reasonable modifications in policies, practices, 

or procedures, when such modifications are 

necessary” for patients with disabilities to access 

needed services.297

In 2018, Kansas298 and Ohio299 both passed 

similar nondiscrimination laws. Recently, 

and after years of debate, Pennsylvania did 

likewise.300 John Sarbatina, a Pennsylvania state 

senator, first introduced “Paul’s Law” in 2014, 

named after Paul Corby, a man with autism 

who was denied a heart transplant.301 The law, 

like those that passed in other states, seeks to 

prohibit discrimination on the basis of disability, 

and prevent individuals with “‘an adequate 

support system’” from being denied transplants 

due to an inability to comply with postoperative 

regimens.302 Note, however, that Pennsylvania’s 

bill lacks the detail of many of its predecessors. 

The bill provides only that discrimination solely 

on the basis of disability is prohibited, and that 

unless “following an individualized evaluation” 

a disability is deemed to be “medically 

58 National Council on Disability
significant,” individuals who have a “necessary 

support system” should not be rejected for 

an inability to comply with the postoperative 

regimen.303

Particularly for the states that have only 

recently enacted laws to prevent discrimination 

against people with disabilities in the organ 

transplant process, it is difficult to know how 

the laws are being applied in practice. But 

as discussed in Chapter 3, several transplant 

centers have information listed on their websites 

that indicate they are not in compliance with the 

antidiscrimination laws in their state, particularly 

when it comes to the treatment of people with 

psychiatric disabilities and evaluating individuals’ 

ability to comply with the postoperative regimen. 

This may be due to a lack of knowledge about the 

state law, or a lack of understanding regarding 

the breadth of disabilities the state law was 

meant to protect. For instance, California and 

New Jersey—the first two states to enact 

antidiscrimination legislation, and the two states 

most often invoked by states pursuing similar 

laws—enacted their legislation specifically to 

protect people with developmental disabilities in 

the organ transplant context.304 As a result, some 

physicians and organ transplant centers may not 

be aware that legal protections also extend to 

other types of disabilities.

California’s Organ Transplant 

Nondiscrimination Law

California’s law banning organ transplant 

discrimination is the oldest in the country and 

has been used as a model for subsequent 

laws in other states.305 The law came about as 

a response to the battle of Sandra Jensen, a 

woman with Down syndrome, to obtain a heart 

transplant that was needed to save her life.306

Ms. Jensen had been denied a transplant by 

both Stanford University and the University of 

California at San Diego for over 2 years, despite 

the fact that there was no evidence indicating 

that her disability lessened the likelihood of the 

transplant being successful.307 Disability Rights 

California and other advocates argued that 

Ms. Jensen’s civil rights were violated when 

she was denied the chance to receive an organ 

transplant because of her disability.308 Ms. Jensen 

eventually received a heart transplant at Stanford 

University, becoming the first person with 

Down syndrome to receive a major transplant,309

and Disability Rights California later led the 

fight to pass California’s 1996 law prohibiting 

discrimination in organ transplantation, in order 

to prevent what happened to Ms. Jensen from 

happening to other people with disabilities.310

The Uniform Anatomical Gift Act prohibits 

denying a transplant due solely to a patient’s 

disability, using the definition of disability under 

the ADA.311 The law “does permit denying 

eligibility for transplant ‘to the extent that the 

physical or mental disability has been found by 

a physician and surgeon, following a case-bycase evaluation of the potential recipient, to 

be medically significant to the provision of the 

anatomical gift.’”312 This caveat in the Uniform 

Anatomical Gift Act consequently provides 

significant leeway for bias to persist in organ 

transplant decisions, especially because the term 

“medically significant” remains undefined.313

The fact that many decisions related to organ 

transplants are made during informal, unrecorded 

proceedings further heightens the potential 

for discrimination despite the existence of 

California’s law.

Where discrimination is suspected, the 

Uniform Anatomical Gift Act requires that courts 

Organ Transplants and Discrimination Against People with Disabilities 59
give priority review to any action brought under 

the statute in recognition of the risk of irreparable 

harm that a protracted battle to reverse a 

transplant denial entails.314 But even on this front, 

the law simply states that courts are to provide 

priority review to “any action brought to seek 

any remedy authorized by law for purposes of 

enforcing compliance with this section.”315 In 

other words, “[n]o specific penalties or remedies 

are set forth in the statute to encourage 

compliance,”316 making the law less powerful in 

preventing discrimination.

Maryland’s Organ Transplant 

Nondiscrimination Law

Maryland’s 2015 legislation was based on 

model legislation written by ASAN,317 and was 

unanimously passed by the Maryland legislature 

as the result of advocacy from The Arc of 

Maryland, the Maryland Disability Law Center, 

and ASAN.318 Like its California and New Jersey 

predecessors, Maryland’s law fails to define 

what constitutes a “medically significant” reason 

to deny a person a transplant.319 That said, the 

law does contain more specificity than prior 

legislation in other respects. For instance, the 

statute does not merely provide that a person 

with a disability cannot be denied a place on an 

organ transplant waiting list solely on the basis 

of that person’s disability.320 Instead, the statute 

goes further, specifically stating that a person 

with a disability cannot be placed “at a lowerpriority position on an organ transplant waiting list 

than the position at which the qualified individual 

would have been placed if not for the disability.”321

The Maryland law imports ADA requirements 

by providing that “reasonable modifications 

in policies, practices, or procedures” should 

be made as necessary to provide access to 

transplant services.322 It also requires transplant 

centers to “take such steps as may be necessary 

to ensure that an individual with a disability is not 

denied” transplant services “due to the absence 

of auxiliary aids and services.”323 Importantly, 

Maryland’s law specifies that supported decision 

making is among the types of auxiliary aids and 

services that must be provided to an individual 

with a disability when needed for a successful 

organ transplant, and makes clear that it need not 

be provided through a formal supported decisionmaking program.324

The statute also requires priority review for 

any actions brought under the law and explicitly 

states that courts should apply the ADA.325 In 

doing so, Maryland’s antidiscrimination statute 

does what California’s Uniform Anatomical Gift 

Act does not, and makes clear that actions 

may be brought seeking “injunctive or other 

equitable relief.”326 As a result, while Maryland 

does not impose the same deterrent fines 

for discrimination as Massachusetts does in 

its antidiscrimination statute, Maryland’s law 

nonetheless provides courts with guidance about 

available remedies.327

60 National Council on Disability
Chapter 5: Case Study: Lief and Paul

NCD’s case study for this report focuses 

on Lief, a nonspeaking autistic child 

who struggled to obtain a heart 

transplant due to his disability. Lief types in 

order to communicate, and has several other 

characteristics of autistic people, including 

motor planning difficulties. When he was 9 years 

old, Lief developed a viral heart condition that 

threatened his life and he needed an immediate 

heart transplant. But two transplant hospitals 

rejected Lief as a patient solely because he 

was autistic. Lief’s mother, Jessica Sunshine 

Bodey, publicized her son’s case328 and strongly 

advocated for his transplant in an effort to save 

his life. Ultimately, Lucile Packard Children’s 

Hospital at Stanford University gave Lief a heart 

transplant.

Lief was chosen for this case study both 

because his case was publicized in the 

media, and because it demonstrates how the 

assumptions of doctors and transplant center 

physicians about disability can lead to organ 

transplant discrimination.

This chapter also highlights the story of Paul 

Corby, an autistic adult with psychiatric disabilities 

who was denied access to a heart transplant 

on the basis of his disabilities. The societal 

prejudices that led to Mr. Corby being denied a 

transplant are similar to those faced by Lief.

Beginnings

Lief’s struggle to survive began unexpectedly 

when he was 9 and developed a viral heart 

condition that, according to Ms. Bodey, caused 

his health to decline rapidly, leaving him near 

death within a couple of weeks. The virus 

flooded his heart with fluid, and the pressure 

from the fluid inside his heart tore Lief’s heart 

muscle.329 Without a heart transplant, Lief had, 

at most, a few days or weeks to live. When 

Ms. Bodey arrived at a local children’s hospital, 

the doctors told Ms. Bodey that “no facility 

would perform the transplant, and we should 

prepare for him to die.”330

Ms. Bodey frantically called several organ 

transplant centers, desperately asking them if 

they would offer a heart transplant to her son. 

But the hospitals Ms. Bodey called rejected 

Lief as a candidate for a heart transplant, which 

Ms. Bodey believed was because Lief was 

autistic.331

Mr. Corby, who is autistic and has psychiatric 

disabilities and also needed a heart transplant, 

was denied based on his perceived inability to 

comply with postoperative care and the organ 

transplant process due to his disabilities. The 

transplant center that evaluated him reportedly 

denied him because he was carrying a doll 

for comfort and could not name all 19 of the 

Organ Transplants and Discrimination Against People with Disabilities 61
medications he took—a feat which would be 

quite difficult for many people.

Disregard

During Lief’s stay at the local children’s hospital, 

the hospital appeared to Ms. Bodey to not even 

be attempting to save Lief’s life; indeed, she was 

told as much by a nurse at the hospital.

Mr. Corby’s mother, Karen Corby, reported 

that her son’s primary care physicians behaved 

in a way that suggested that they dismissed the 

degree to which his life was at risk. Mr. Corby’s 

physicians attributed many of his more striking 

symptoms, such as chest pains, vomiting, and 

high heart rate, to anxiety. The doctors eventually 

began to attribute his distress to stomach 

problems and never ordered any tests to check 

for heart problems.

Transplantation

According to Ms. Bodey, Lief only survived 

because a young doctor argued strenuously in 

their favor to Lucile Packard Children’s Hospital 

at Stanford, which finally did accept Lief. 

During the meeting with doctors at Stanford, 

Stanford saw Lief typing to communicate and, 

“at the 11th hour,” accepted him.332 Lief was 

quickly flown to Stanford where he received 

an LVAD.333

Ms. Bodey explained in her interview that 

upon her arrival at Stanford, she was told by the 

doctors that the transplant was unprecedented 

because they had never transplanted a heart 

into a child with autism as “severely affected” 

as Lief. Ms. Bodey noted that the very fact that 

Lief’s transplant was seen as so revolutionary 

by Stanford meant that few children like Lief 

had ever been provided with a heart transplant 

before.

Lief’s road to transplantation was still 

difficult even after he was accepted at Stanford. 

According to Ms. Bodey, his LVAD failed three 

times. In other words, Lief had to have five 

separate open-heart surgeries: four to insert 

LVADs, and one to transplant the heart.334

Nonetheless, Ms. Bodey reported Lief handled 

the surgeries extremely well, enduring a year in 

the hospital, when prior to his hospitalization, 

he had been unable sit in a restaurant for more 

than a few minutes. Lief himself attributed his 

endurance to the knowledge that his life was 

at stake.

Mr. Corby, as of yet, has not received a 

heart transplant. His mother reports that his 

condition is stable, but that because of previous 

rejections following evaluation, he does not 

wish to undergo any further evaluations unless 

he is guaranteed placement on the transplant 

recipient list. As a result, he and his family are 

not seeking further evaluations by transplant 

centers at this time.

Aftermath

According to Ms. Bodey, families of children 

with I/DD may, in fact, be better prepared to 

go through the rigorous transplant experience 

and to help their children handle postoperative 

care, due to their pre-existing support networks 

and familiarity with providing their children with 

similar care.

Lief continues to experience some physical 

disabilities as a result of the five separate openheart surgeries he endured and the significant 

amount of time he spent in the hospital. 

Ms. Bodey said that while her son always had 

difficulties with motor skills, he used to be able 

to run and swim. He can no longer do either. 

Even so, Lief is enjoying his life and the pair 

62 National Council on Disability
remain optimistic. Ms. Bodey said she has 

found it rewarding that she has been able to 

use their experience to connect with others and 

advocate for access to organ transplantation 

for people with disabilities. She and Lief 

testified at the Oregon House Committee on 

Health Care regarding the state’s then-pending 

antidiscrimination legislation, where Lief thanked 

the committee for “doing the right thing.”335

According to Karen Corby, the family spoke 

with DOJ concerning the discrimination, but 

the department did not take any action that 

would rectify it. This disappointing result 

did not prevent the family from advocating 

for the development of state laws which 

would prevent individuals from experiencing 

discrimination in the future. Karen and Paul 

Corby were involved in state efforts to pass 

“Paul’s Law,” a Pennsylvania bill named after 

Mr. Corby that prohibits organ transplant 

discrimination when a denial is based solely on 

disability, including denials based on the need 

for a support system in order to comply with 

postoperative care.336

Organ Transplants and Discrimination Against People with Disabilities 63
64 National Council on Disability
Chapter 6: Recommendations

Preface

Preventing discrimination on the basis of 

disability in the organ transplant process 

is challenging, particularly given that 

such discrimination is likely to involve pervasive 

biases and assumptions about people with 

disabilities, including that their quality of life 

may not justify the transplant, that disability 

is a contraindication for transplant due to noncompliance with post-operative treatment, and 

that organ transplants for people with disabilities 

will by definition have poorer medical outcomes 

than transplants for people without disabilities. 

Discrimination against people with disabilities 

may also be difficult to detect, occurring when a 

patient asks for a referral to an organ transplant 

center, or when that transplant center conducts 

(or refuses to conduct) what is often an informal 

evaluation process to determine whether 

the person with a disability is eligible for a 

transplant. But efforts can be taken at both the 

federal and state level to help prevent this oft 

hidden discrimination.

Action should also be taken to prevent 

discrimination in the organ procurement context, 

where people with disabilities may be especially 

vulnerable. Reforming the approach to organ 

procurement to protect people with disabilities 

and ensuring that policies are in place to prevent 

people with disabilities from being targeted for 

organ procurement, will help protect people 

with disabilities from harm due to misplaced 

ideas about the value of the lives of people with 

disabilities.

Federal Guidance and Policy Reform

Federal guidance would assist physicians, 

organ transplant centers, and courts in avoiding 

discrimination against people with disabilities 

in the organ transplant process. In 2016, 

30 members of Congress wrote a letter urging 

HHS’s Office for Civil Rights (OCR) to issue 

guidance clarifying that: (1) organ transplant 

discrimination violates Title II of the Americans 

with Disabilities Act; (2) transplant entities must 

incorporate the patient’s support network and 

services into eligibility policies and practices; and 

(3) people with disabilities should be provided 

with all necessary auxiliary aids and services 

they need for a successful organ transplant and 

postoperative regimen.337

No guidance was issued as a result of the 

2016 letter to HHS, but guidance from DOJ and 

HHS should be issued now.

Organ Transplants and Discrimination Against People with Disabilities 65
The Department of Justice (DOJ), in conjunction with the Department 

of Health and Human Services (HHS)

In addition to the items proposed in the 2016 letter, federal guidance should also:

■ Emphasize that physicians must assess candidates for organ transplants individually, and 

without stereotypes about disability.

■ Explicitly state that making assumptions regarding the post-transplant quality of life for 

people with disabilities violates federal law.

■ Make clear that the ADA and Section 504 apply throughout the organ transplant process, 

including informal eligibility determinations, such that disability should only be taken 

into account to the extent that it can be clearly shown to be likely to impair successful 

transplantation.

■ Encourage priority review of any cases brought challenging discrimination on the basis of 

disability in the organ transplant context in acknowledgment of the time-sensitive nature of 

a transplant denial.

■ Delineate organ transplant center and physician responsibilities under Section 504 and 

the ADA to make reasonable modifications in their policies, practices, and procedures for 

individuals with disabilities seeking transplantation, and to ensure effective communication 

with those individuals including by providing, among other things, accessible digital and 

print materials for patients and families. Reasonable modifications should include ensuring 

that a patient has the necessary support services to comply with post-operative care.

■ DOJ and HHS should also provide technical assistance to organ transplant centers and 

physicians in complying with the foregoing obligations. Issuing guidance and providing 

technical assistance would increase the likelihood that the application of the ADA, 

Section 504, and Section 1557 to the organ transplant process would be understood 

and that compliance with these laws would prevent disability discrimination in the organ 

transplant process. Organ transplant center policies that discriminate could more easily be 

challenged, and it may become easier to address the hidden discrimination inherent in the 

evaluation process.

(continued)

66 National Council on Disability
The Department of Justice (DOJ), in conjunction with the Department 

of Health and Human Services (HHS), continued

■ HHS should fund a multi-year research and technical assistance project that investigates 

how transplant centers and organ procurement organizations respond to guidance about 

disability discrimination. To the extent appropriate, the results should be used to inform the 

provision of technical assistance, and perhaps further guidance, in this area.

■ HHS should also award grants to fund a comprehensive study of patient selection criteria 

for people with disabilities in the organ transplant process. The results may be useful in 

informing the development of a uniform evaluation process for organ transplant centers 

to use when evaluating patients who may need organ transplants in order to help ensure 

that patients with disabilities receive a transparent evaluation that employs clear guidelines 

for transplant eligibility. This may alleviate some of the “hidden discrimination” otherwise 

inherent in the organ transplant process.

■ Organ transplant centers should also be required to provide supported decision making 

when needed as a reasonable modification under the ADA, Section 504, and/or Section 1557 

to assist people with disabilities in undergoing the organ transplantation process.

■ Because “hidden discrimination” may still go undetected, even with a uniform evaluation 

process, and given the time-sensitive nature of organ transplants, DOJ and HHS should 

launch an online complaint system and hotline, coupled with a priority enforcement 

process, dedicated to those experiencing discrimination on the basis of disability in the 

organ transplant process.

UNOS/OPTN

Disability rights representatives should be included on the UNOS/OPTN Board and key 

committees in order to ensure that UNOS/OPTN continues to apply its waitlist criteria 

in a non-discriminatory manner, and to reform any UNOS/OPTN guidelines that could be 

interpreted by organ transplant centers as allowing people with disabilities to be kept off 

of the waitlist for a transplant.

Organ Transplants and Discrimination Against People with Disabilities 67
State Legislation

With the exception of California’s Uniform 

Anatomical Gift Act, the state laws aiming to 

prevent discrimination on the basis of disability 

for organ transplants are relatively new. As a 

result, it is difficult at this stage to know whether 

they will be successful—or at least, more 

successful than federal law—in improving access 

to transplants for people with disabilities.338

Even so, enacting state laws preventing organ 

transplants from being denied on the basis of 

disability should promote awareness among 

physicians that this discrimination is illegal, 

particularly given that doctors may otherwise be 

unaware that the ADA and Section 504 prohibit 

such actions.339

ASAN’s model legislation340 and Maryland’s 

subsequently enacted statute341 that closely 

adheres to ASAN’s model are sources of 

guidance for states looking to implement their 

own legislation. But even this legislation can be 

improved on in order to meaningfully prevent 

discrimination, particularly during informal 

decision-making processes, and to ensure the 

effective adjudication of disputes.

States

At a minimum, state legislation seeking to prevent discrimination against people with 

disabilities in the organ transplantation process should:

■ Prohibit the denial of necessary transplants on the basis of disability, including mental 

health disabilities, by doctors, hospitals, transplant centers, and other healthcare 

organizations.

■ Require documentation of every stage of the organ transplant process to prevent hidden 

discrimination.

■ Require the priority review of claims brought under the statute by courts in order to avoid 

the problems inherent in the slow-moving pace of litigation brought under the ADA and 

Section 504 and the fact that time can be a matter of life and death for someone in need of 

an organ transplant.342

■ Require that eligibility determinations “consider not only the person’s ability to manage 

post-operative care independently but also the full range of supports available to help the 

person manage post-operative care.”343 This helps prevent organ transplants from being 

denied to people with disabilities based on a physician’s concern that the patient will have 

difficulty complying with postoperative care.344

(continued)

68 National Council on Disability
States, continued

■ Require that any auxiliary aids and services that people with disabilities need in order to 

access transplant services be provided.345

■ Require “reasonable modifications in policies, practices, or procedures” for people with 

disabilities at each and every stage of the organ transplantation process. While such 

a provision is duplicative of an ADA requirement, including it in state legislation may 

help clarify the responsibilities and obligations healthcare providers must have to their 

patients.346

■ Require covered entities, including organ transplant centers, to provide supported decision 

making as needed for people with disabilities, including making patient advocates available 

at organ transplant centers.

■ Prohibit discrimination on the basis of disability in health plans that cover organ transplants.

■ Specify the penalties for discriminating on the basis of disability, and make both injunctive 

relief and damages available.

Organ Transplants and Discrimination Against People with Disabilities 69

The more states that adopt legislation 

preventing discrimination based on disability in 

the organ transplant process, the more likely 

it is that such discrimination will be prevented 

in reality. In fact, state legislation that includes 

provisions like those set forth above could 

also provide a basis for the creation of federal 

guidelines on this issue.

Organ Procurement Policy Reform

Discrimination on the basis of disability in the 

organ transplant process may be difficult to 

detect, let alone prevent. But given the clear 

indication that this discrimination exists, policy 

makers should take affirmative action to prevent 

it in the first place.
UNOS/OPTN

UNOS/OPTN should proactively work to prevent people with disabilities from being 

discriminated against in the organ procurement process while allowing them to make their 

own informed choices. To do so, UNOS/OPTN should:

■ Ensure that individuals and families are able to make informed decisions about the 

withdrawal of life-sustaining treatment prior to and independent from any contacts from 

organ procurement organizations (OPOs). Those decisions should only be made once 

the family has received information in plain language regarding assessments that will be 

conducted, prognosis, and treatment options.

■ Ensure that conscious potential donors are provided appropriate psychological counseling 

and support to live before OPOs are permitted to approach them.

■ Prohibit any form of organ recruitment program that selectively targets people with 

disabilities, including newly injured individuals, people with amyotrophic lateral sclerosis 

(ALS), or other life-limiting conditions.

■ Ensure that organ procurement requirements are clear and specific, comply with the 

nondiscrimination requirements of the ADA and Section 504, and include appropriate and 

proportional consequences for failure to comply.

■ Incorporate disability information pertaining to the organ donor, including primary diagnosis 

and type of disability, in organ procurement data collection.

■ Educate providers on best practices regarding determinations of brain death and current 

resources available to aid in making those determinations.

70 National Council on Disability
Appendix

(These tables were current as of March 2019.)

Table 1: Organ Transplant Centers by Region

Region Number Total Number of Organ 

Transplant Centers

Region 1: Connecticut, Maine, Massachusetts, New Hampshire, 

Rhode Island, Eastern Vermont

14

Region 2: Delaware, District of Columbia, Maryland, New Jersey, 

Pennsylvania, West Virginia, Northern Virginia

35

Region 3: Alabama, Arkansas, Florida, Georgia, Louisiana, 

Mississippi, Puerto Rico

30

Region 4: Oklahoma, Texas 29

Region 5: Arizona, California, Nevada, New Mexico, Utah 33

Region 6: Alaska, Hawaii, Idaho, Montana, Oregon, Washington 9

Region 7: Illinois, Minnesota, North Dakota, South Dakota, Wisconsin 23

Region 8: Colorado, Iowa, Kansas, Missouri, Nebraska, Wyoming 19

Region 9: New York, Western Vermont 16

Region 10: Indiana, Michigan, Ohio 20

Region 11: Kentucky, North Carolina, South Carolina, Tennessee, 

Virginia (aside from the Northern Virginia region)

25

Organ Transplants and Discrimination Against People with Disabilities 71
Table 2: Organ Transplant Centers by State

State Region/Regions Number of Transplant Centers

Connecticut 1 2

Maine 1 1

Massachusetts 1 9

New Hampshire 1 1

Rhode Island 1 1

Vermont 1, 9 1

Delaware 2 2

District of Columbia 2 4

Maryland 2 3

New Jersey 2 6

Pennsylvania 2 18

West Virginia 2 1

Virginia 2, 11 7

Alabama 3 3

Arkansas 3 3

Florida 3 13

Georgia 3 4

Louisiana 3 4

Mississippi 3 1

Puerto Rico 3 2

Oklahoma 4 4

Texas 4 25

Arizona 5 5

California 5 22

Nevada 5 1

New Mexico 5 2

Utah 5 3

Alaska 6 No data

Hawaii 6 1

Idaho 6 No data

Montana 6 No data

Oregon 6 3

(continued)

72 National Council on Disability
Table 2: Organ Transplant Centers by State

State Region/Regions Number of Transplant Centers

Washington 6 5

Illinois 7 9

Minnesota 7 6

North Dakota 7 2

South Dakota 7 2

Wisconsin 7 4

Colorado 8 4

Iowa 8 4

Kansas 8 1

Missouri 8 8

Nebraska 8 2

Wyoming 8 No data

New York 9 15

Indiana 10 3

Michigan 10 9

Ohio 10 8

Kentucky 11 3

North Carolina 11 5

South Carolina 11 2

Tennessee 11 9

, continued

Organ Transplants and Discrimination Against People with Disabilities 73
74 National Council on Disability
Endnotes

1 “Transplant Trends,” United Network for Organ Sharing (UNOS), accessed March 25, 2019, https://unos.org/

data/transplant-trends.

2 42 U.S.C. § 12102.

3 “Organ Procurement and Transplantation Network,” Organ Procurement and Transplantation Network, US 

Department of Health and Human Services, accessed March 25, 2019, https://optn.transplant.hrsa.gov.

4 “About UNOS,” United Network for Organ Sharing, accessed March 25, 2019, https://unos.org/about.

5 42 C.F.R. § 121.2.

6 “Members,” Organ Procurement and Transplantation Network, US Department of Health and Human 

Services, accessed March 25, 2019, https://optn.transplant.hrsa.gov/members.

7 “Frequently Asked Questions,” Transplant Living, United Network for Organ Sharing, 2019, 

https://transplantliving.org/before-the-transplant/frequently-asked-questions.

8 As disability discrimination in organ donation and organ procurement are different in both character and 

kind from disability discrimination during the organ transplantation process, they are not discussed in this 

subsection. A brief subsection on disability discrimination in organ procurement can be found in Chapter 1 of 

this report.

9 “What Every Patient Needs to Know,” United Network for Organ Sharing, 2016, accessed July 30, 2019, 

https://unos.org/wp-content/uploads/unos/WEPNTK.pdf; “Referrals,” Comprehensive Treatment Center, 

Johns Hopkins Medicine, accessed March 12, 2019, https://www.hopkinsmedicine.org/transplant/patient_

information/experience/before_transplant/referral_faqs/index.html.

10 “What Every Patient Needs to Know,” United Network for Organ Sharing.

11 “Before the Transplant,” Transplant Living, United Network for Organ Sharing, 2019, https://transplantliving.

org/before-the-transplant.

12 42 C.F.R. § 121.6(c).

13 “The Transplant Team,” Organ Procurement and Transplantation Network, US Department of Health and 

Human Services, accessed March 25, 2019, https://optn.transplant.hrsa.gov/learn/about-transplantation/

the-transplant-team.

14 “Before the Transplant,” United Network for Organ Sharing.

15 Sara Frank, “Eligibility Discrimination of the Intellectually Disabled in Pediatric Organ Transplantation,” 

Journal of Health and Biomedical Law 10 (2014): 116.

16 See Mandeep R. Mehra et al., “The 2016 International Society for Heart Lung Transplantation Listing 

Criteria for Heart Transplantation: A 10-Year Update,” Journal of Heart and Lung Transplantation 35, no. 1 

(January 2016): 1–23.

17 Swapnil Khurana, Varun Kapur, and Shuja Haque, “Intellectual Disability Impedes Decision-Making in Organ 

Transplantation,” Current Psychiatry 15, no. 2 (February 2016): e1.

18 Frank, “Eligibility Discrimination,” 117–19.

19 “Frequently Asked Questions,” United Network for Organ Sharing; Tien-Kha Tran, “Organ Transplantation 

Eligibility: Discrimination on the Basis of Cognitive Disability,” Journal of Law and Policy 24 (2016): 644.

20 “Organ Procurement and Transplantation Network (OPTN) Policies: 3.4.C,” Organ Procurement and 

Transplantation Network, US Department of Health and Human Services, September 1, 2018, https://optn

.transplant.hrsa.gov/media/1200/optn_policies.pdf.

21 42 U.S.C. § 274 (b)(2)(A)(i).

Organ Transplants and Discrimination Against People with Disabilities 75
22 “Living Donation,” Transplant Living, United Network for Organ Sharing, 2019, https://transplantliving.org/

living-donation.

23 “Donor Matching System,” Organ Procurement and Transplantation Network, US Department of Health and 

Human Services, accessed March 25, 2019, https://optn.transplant.hrsa.gov/learn/about-transplantation/

donor-matching-system.

24 Danielle Richards, “The Defibrillation of NOTA: How Establishing Federal Regulation of Waitlist Eligibility 

May Save Organ Transplant Patients with Disabilities from Flat-Lining,” Southern California Law Review 87 

(November 2013): 173–74.

25 Richards, “The Defibrillation of NOTA,” 173.

26 Richards, “The Defibrillation of NOTA,” 173, n. 86; “Organ Procurement and Transplantation Network (OPTN) 

Policies: 8.2 and 8.5,” Organ Procurement and Transplantation Network, US Department of Health and Human 

Services, September 1, 2018, https://optn.transplant.hrsa.gov/media/1200/optn_policies.pdf.

27 Richards, “The Defibrillation of NOTA,” 173.

28 Richards, “The Defibrillation of NOTA,” 173–74.

29 Richards, “The Defibrillation of NOTA,” 173–74.

30 Richards, “The Defibrillation of NOTA,” 173–74.

31 See “Organ Procurement and Transplantation Network (OPTN) Policies,” Organ Procurement and 

Transplantation Network, US Department of Health and Human Services, September 1, 2018, https://optn

.transplant.hrsa.gov/media/1200/optn_policies.pdf.

32 Richards, “The Defibrillation of NOTA,” 174.

33 “The New Adult Heart Allocation Policy Takes Effect This Thursday, Oct. 18, 2018,” United Network for 

Organ Sharing, October 17, 2018, https://unos.org/news/the-new-adult-heart-allocation-policy-takes-effect-thisthursday-oct-18-2018; United Network for Organ Sharing, “What Patients Should Know About the New Adult 

Heart Allocation System,” [PowerPoint presentation], June 2018, https://transplantpro.org/wp-content/uploads/

sites/3/adult-heart-patient-presentation-June-018_Final.pptx.

34 “Donor Matching System,” Organ Procurement and Transplantation Network.

35 “Donor Matching System,” Organ Procurement and Transplantation Network.

36 “Donor Matching System,” Organ Procurement and Transplantation Network.

37 “Donor Matching System,” Organ Procurement and Transplantation Network.

38 “Donor Matching System,” Organ Procurement and Transplantation Network.

39 “Donor Matching System,” Organ Procurement and Transplantation Network.

40 Eve Glicksman, “New Life for Less-than-Perfect Organs,” AAMC News, May 29, 2018, https://news.aamc.org/

research/article/new-life-less-perfect-organs.

41 “Members,” Organ Procurement and Transplantation Network.

42 “Members,” Organ Procurement and Transplantation Network.

43 “Member Directory,” Organ Procurement and Transplantation Network, US Department of Health and Human 

Services, accessed March 25, 2019, https://optn.transplant.hrsa.gov/members/member-directory/?member

Type=Transplant%20Centers.

44 “Regions,” Organ Procurement and Transplantation Network, US Department of Health and Human Services, 

accessed March 25, 2019, https://optn.transplant.hrsa.gov/members/regions.

45 Karen Corby, interviewed by NCD, December 6, 2018.

46 Karen Corby, interviewed by NCD, December 6, 2018.

47 Karen Corby, interviewed by NCD, December 6, 2018.

48 Karen Corby, interviewed by NCD, December 6, 2018.

49 Oregon House Committee on Health Care, “Public Hearings on HB 2319, HB2388, and HB 2839,” 

February 15, 2017, video.

50 Jessica Sunshine Bodey, interviewed by NCD, November 2, 2018.

51 Jessica Sunshine Bodey, interviewed by NCD, November 2, 2018.

76 National Council on Disability
52 “Lives Worth Saving: Organ Transplantation and People with Disabilities,” July 12, 2004, https://mn.gov/

mnddc/news/pdf/archive/transplant_article6-04.pdf.

53 Venodhar R. Julapalli, Jennifer R. Kramer, and Hashem B. El-Serag, “Evaluation for Liver Transplantation: 

Adherence to AASLD Referral Guidelines in a Large Veterans Affairs Center,” Liver Transplantation 11, no. 11 

(November, 2005): 1372, http://doi.org/10.1002/lt.20434.

54 Arnold M. Epstein et al., “Racial Disparities in Access to Renal Transplantation—Clinically Appropriate or Due 

to Underuse or Overuse?” New England Journal of Medicine 343, no. 21 (November 2000): 1537–44, table 3, 

http://doi.org/10.1056/nejm200011233432106.

55 Christine Rivera, “Brick Walls,” Wolfhirshhorn.org (blog), January 12, 2012, http://wolfhirschhorn.org/2012/01/

amelia/brick-walls.

56 Rivera, “Brick Walls.”

57 Rivera, “Brick Walls.”

58 Rita Price, “Should a Disability Affect Who Gets Organ Transplants?” Columbus Dispatch, October 22, 2017, 

https://www.dispatch.com/news/20171022/should-disability-affect-who-gets-organ-transplants.

59 Katherine Cahn-Fuller and Brendan Parent, “Transplant Eligibility for Patients with Affective and Psychotic 

Disorders: A Review of Practices and a Call for Justice,” BMC Medical Ethics 18, no. 72 (2017): 1.

60 See Chapter 2 regarding medical outcomes for people with disabilities who receive organ transplants.

61 A survey found that adult programs were even more likely to consider intellectual disabilities as a 

contraindication of transplant than pediatric transplant programs. Jackie Fortier, “People with Developmental 

Disabilities May Face Organ Transplant Bias,” NPR, March 15, 2018, https://stateimpact.npr.org/

oklahoma/2018/03/15/people-with-developmental-disabilities-may-face-organ-transplant-bias. A 2008 Stanford 

study found that 85 percent of pediatric transplant centers sometimes consider “neurodevelopmental 

status” in the eligibility process. Price, “Should a Disability Affect Who Gets Organ Transplants?” 

[Transplant providers were surveyed regarding how different characteristics influence decisions regarding 

patient eligibility for liver transplants and a psychiatric diagnosis was found to be one of the top three 

most controversial characteristics and psychiatric diagnoses or suicide attempts were relative or absolute 

contraindications of liver transplantation to many providers, as were moderate to severe cognitive disabilities. 

Katharine Secunda et al., “National Survey of Provider Opinions on Controversial Characteristics of Liver 

Transplant Candidates,” Liver Transplantation 19 (2013): 395–403. A study found good transplant outcomes 

for pediatric patients with intellectual disabilities but also found evidence that many providers still consider 

such disabilities a relative or absolute contraindication to transplantation. Aaron Wightman, Douglas Diekema, 

and Aviva Goldberg, “Consideration of Children with Intellectual Disability as Candidates for Solid Organ 

Transplantation—A Practice in Evolution,” Pediatric Transplantation 22, no. 1 (February 2018).

62 Joseph Shapiro, “Disabled Woman Dies While Awaiting Second Chance at Kidney Transplant,” NPR, June 13, 

2012, https://www.npr.org/sections/health-shots/2012/06/13/154914089/disabled-woman-dies-while-awaitingsecond-chance-at-kidney-transplant.

63 Christopher T. Richards, LaVera M. Crawley, and David Magnus, “Use of Neurodevelopmental Delay in 

Pediatric Solid Organ Transplant Listing Decisions: Inconsistencies in Standards Across Major Pediatric 

Transplant Centers,” Pediatric Transplantation 13 (2009): 843–48.

64 Richards, Crawley, and Magnus, “Use of Neurodevelopmental Delay,” 847.

65 Marilee Martens, Linda Jones, and Steven Reiss, “Organ Transplantation, Organ Donation, and Mental 

Retardation,” Pediatric Transplantation 10 (2006): 658–59.

66 Martens, Jones, and Reiss, “Organ Transplantation,” 659.

67 Secunda et al., “National Survey of Provider Opinions,” 399.

68 Secunda et al., “National Survey of Provider Opinions,” 399.

69 Wightman, Diekema, and Goldberg, “Consideration of Children,” 1–3.

70 Secunda et al., “National Survey of Provider Opinions,” 400.

71 Secunda et al., “National Survey of Provider Opinions,” 399.

Organ Transplants and Discrimination Against People with Disabilities 77
72 Secunda et al., “National Survey of Provider Opinions,” 399.

73 Secunda et al., “National Survey of Provider Opinions,” 399.

74 Cahn-Fuller and Parent, “Transplant Eligibility,” 7.

75 Cahn-Fuller and Parent, “Transplant Eligibility,” 7.

76 Emily K. White, “A Reason for Hope? A Legal and Ethical Implementation of the HIV Organ Policy Equity Act,” 

Boston University Law Review 96 (March 2016): 615–17.

77 Secunda et al., “National Survey of Provider Opinions,” 401.

78 Secunda et al., “National Survey of Provider Opinions,” 399, 401.

79 Richards, Crawley, and Magnus, “Use of Neurodevelopmental Delay,” 846–47.

80 Richards, “The Defibrillation of NOTA,” 154.

81 Fortier, “People with Developmental Disabilities.”

82 Arthur Caplan, “Going Too Extreme,” Bioethica Forum 3, no. 2 (2010): 30–31; Joseph Fins, “Severe Brain 

Injury and Organ Solicitation: A Call for Temperance,” AMA Journal of Ethics, Virtual Mentor 14, no. 3 (March 

2012): 221–26, accessed May 26, 2018, http://virtualmentor.ama-assn.org/2012/03/stas1-1203.html.

83 Diane Coleman and John Kelly, “Not Dead Yet Urges Secretary Sebelius and Organ Procurement and 

Transplantation Network to Prohibit Organ Procurers from Pressuring Sick or Injured to Give Up on Living,” 

Cision PR Web, June 20, 2013, http://www.prweb.com/releases/2013/6/prweb10852604.htm.

84 “One concern sometimes expressed about changes to organ donation procedures is that this may lead 

to the death of patients who would have otherwise survived [because] [i]f doctors know that a patient’s 

organs can be used to save others’ lives, it may influence their assessment of whether a patient’s 

condition is truly hopeless.” Dominic Wilkinson and Julian Savulescu, “Should We Allow Organ Donation 

Euthanasia? Alternatives for Maximizing the Number and Quality of Organs for Transplantation,” Bioethics

26, no. 1 (2012): 45. Stephanie Petit, “‘Miracle’ Boy, 13, Who Was Apparently Brain Dead Wakes 

After Parents Sign Organ Donation Papers,” People, May 6, 2018, https://people.com/human-interest/

boy-wakes-after-parents-sign-organ-donation-papers.

85 Sarah Kaplan, “When Are You Dead? It May Depend on Which Hospital Makes the Call,” Washington 

Post, December 29, 2015, https://www.washingtonpost.com/news/morning-mix/wp/2015/12/29/

when-are-you-dead-it-may-depend-on-which-hospital-makes-the-call/?utm_term=.89355210dfc5.

86 Kaplan, “When Are You Dead?”

87 Kaplan, “When Are You Dead?”

88 A study found no reports of a recovery following a diagnosis of brain death that utilized AAN guidelines but 

also found insufficient evidence that new methods of testing can determine “cessation of function of the 

entire brain” accurately and the minimum period of observation necessary to determine that “neurologic 

functions have ceased irreversibly.” Eelco F. M. Wijdicks et al., “Evidence-Based Guideline Update: 

Determining Brain Death in Adults,” Neurology 74 (June 2010): 1912–14.

89 A study analyzed 492 US hospital policies regarding the determination of brain death, concluding that there is 

significant variability in the determination process across hospitals and that policies were not always aligned 

with best practices, to which the authors suggested that hospitals adhere to the 2010 American Academy of 

Neurology guidelines in order to ensure accuracy in determinations of brain death. David M. Greer, Hilary H. 

Wang, and Jennifer D. Robinson, “Variability of Brain Death Policies in the United States,” JAMA Neurology

73, no. 2 (February 2016): 217–18.

90 Kaplan, “When Are You Dead?”

91 Rob Stein, “Changes in Controversial Organ Donation Method Stir Fears,” Washington Post, Sept. 19, 2011, 

http://articles.washingtonpost.com/2011-09-19/national/35274228_1_organ-donation-unos-board-numberof-available-organs. 

92 Joshua Mezrich and Joseph Scalea, “As They Lay Dying,” Atlantic, April 2015, http://www.theatlantic.com/

magazine/archive/2015/04/as-they-lay-dying/386273. 

78 National Council on Disability
93 Lee Bolton, Public Comment Proposal: Living Organ Donation by Persons with Certain Fatal Diseases Who 

Meet the Criteria to Be Living Organ Donors (UNOS/OPTN Ethics Committee, 2017), 12, https://optn

.transplant.hrsa.gov/media/2218/ethics_pcwhitepaper_201707.pdf. The white paper did note that it would not 

be ethically appropriate for transplant professionals to initiate discussions about living organ donation with 

people with fatal diseases, who are already in a vulnerable position, and that medical professionals should not 

encourage such individuals to consider living organ donation simply because they have fatal diseases.

94 Diane Coleman and Lisa Blumberg, “NDY Public Comment on OPTN Proposal Regarding Living Organ 

Donation by Persons with Certain Fatal Diseases,” Not Dead Yet, October 1, 2017, http://notdeadyet.org/ndypublic-comment-on-optn-proposal-regarding-living-organ-donation-by-persons-with-certain-fatal-diseases. 

95 Lee Bolton, Public Comment Proposal, 5–6, 12, https://optn.transplant.hrsa.gov/media/2218/ethics_

pcwhitepaper_201707.pdf; Coleman and Blumberg, “NDY Public Comment.”

96 Wilkinson and Savulescu, “Should We Allow Organ Donation Euthanasia?,” 47.

97 E. Wesley Ely, “Death by Organ Donation: Euthanizing Patients for Their Organs Gains Frightening Traction,” 

USA Today, May 2, 2019, https://amp.usatoday.com/amp/3628448002.

98 Johns Hopkins Medicine, “One Historic HIV Organ Transplant, Numerous Team Members,” Physician Update, 

February 21, 2017, https://www.hopkinsmedicine.org/news/articles/one-historic-hiv-organ-transplantnumerous-team-members.

99 Lenny Bernstein, “First Living HIV-Positive Donor Provides Kidney for Transplant in Medical Breakthrough,” 

Washington Post, March 28, 2019, https://www.washingtonpost.com/national/health-science/first-living-hivpositive-donor-provides-kidney-for-transplant-in-medical-breakthrough/2019/03/28/29894312-50bc-11e9-88a1-

ed346f0ec94f_story.html?noredirect=on&utm_term=.1a00faeeaa15.

100 Bernstein, “First Living HIV-Positive Donor.”

101 Johns Hopkins Medicine, “First Ever Living Donor HIV-to-HIV Kidney Transplant,” News Release, March 28, 

2019, https://www.hopkinsmedicine.org/news/newsroom/news-releases/first-ever-living-donor-hiv-to-hivkidney-transplant.

102 Bernstein, “First Living HIV-Positive Donor.”

103 Bernstein, “First Living HIV-Positive Donor.”

104 See Scott D. Halpern and David Goldberg, “Allocating Organs to Cognitively Impaired Patients,” New England 

Journal of Medicine 376 (2017): 299–301; Khurana, Kapur, and Haque, “Intellectual Disability Impedes 

Decision-Making,” e2.

105 See Wightman et al., “Prevalence and Outcomes of Heart Transplantation in Children with Intellectual 

Disability,” Pediatric Transplantation 21, no. 2 (March 2017); Wightman, Diekema, and Goldberg, 

“Consideration of Children”; Aaron Wightman et al., “Prevalence and Outcomes of Liver Transplantation in 

Children with Intellectual Disability,” JPGN 62, no. 6 (June 2016): 808–12.

106 Joseph Shapiro, “Dispute over Mental Competency Blocks Transplant,” NPR, December 22, 2006, https://

www.npr.org/templates/story/story.php?storyId=6665577.

107 Price, “Should a Disability Affect Who Gets Organ Transplants?”

108 Price, “Should a Disability Affect Who Gets Organ Transplants?”; Timothy P. Shriver, “The Discriminatory 

Reason Doctors Won’t Give a Baby the Heart She Needs,” Washington Post, April 8, 2016, https://www

.washingtonpost.com/opinions/this-is-the-reason-doctors-wont-give-a-baby-the-heart-she-needs/2016/04/08/

d766816c-fcea-11e5-886f-a037dba38301_story.html?utm_term=.db54facb468a.

109 Shriver, “The Discriminatory Reason.”

110 Halpern and Goldberg, “Allocating Organs,” 299–301.

111 Halpern and Goldberg, “Allocating Organs,” 299–301.

112 Khurana, Kapur, and Haque, “Intellectual Disability Impedes Decision-Making,” e2.

113 Khurana, Kapur, and Haque, “Intellectual Disability Impedes Decision-Making,” e2.

114 See Cahn-Fuller and Parent, “Transplant Eligibility,” 6–8.

Organ Transplants and Discrimination Against People with Disabilities 79
115 Aaron Wightman, Aviva Goldberg, and Douglas Diekema, “Fairness, Severe Intellectual Disability, and the 

Special Case of Transplantation,” Pediatric Transplantation 22, no. 5 (August 2018).

116 Wightman et al., “Prevalence and Outcomes of Heart Transplantation”; Wightman, Diekema, and Goldberg, 

“Consideration of Children”; Wightman et al., “Prevalence and Outcomes of Liver Transplantation,” 808–12.

117 Wightman, Goldberg, and Diekema, “Fairness”; Wightman et al., “Prevalence and Outcomes of Heart 

Transplantation.”

118 Wightman, Goldberg, and Diekema, “Fairness.”

119 Christine Rivera, “Brick Walls.”

120 Wightman, Goldberg, and Diekema, “Fairness.”

121 Cahn-Fuller and Parent, “Transplant Eligibility,” 7.

122 A study followed eight patients with significant intellectual disabilities to determine whether these 

disabilities were a contraindication to kidney transplantation and concluded that intellectual disability 

“should not be considered a contraindication to kidney transplantation.” Enrico Benedetti et al., “Kidney 

Transplantation in Recipients with Mental Retardation: Clinical Results in a Single-Center Experience,” 

American Journal of Kidney Diseases 31, no. 3 (March 1998): 509–12. A study done by Stephen Reiss of 

42 kidney transplant patients with intellectual disabilities found that people with intellectual disabilities who 

receive kidney transplants fare as well as or better than other kidney transplant patients. Shapiro, “Dispute 

over Mental Competency.” A study followed 25 kidney transplant patients with intellectual disabilities and 

found all patients’ grafts survived in the short term and concluded that disability is not a contraindication 

of kidney transplant. Toshiyuki Ohta et al., “Kidney Transplantation in Pediatric Recipients with Mental 

Retardation: Clinical Results of a Multicenter Experience in Japan,” American Journal of Kidney Diseases

47, no. 3 (March 2006): 518–27. Cahn-Fuller and Parent, “Transplant Eligibility,” 6; Alexander N. Goel 

et al., “Heart Transplantation in Children with Intellectual Disability: An Analysis of the UNOS Database,” 

Pediatric Transplantation 21, no. 2 (March 2017); Wightman et al., “Prevalence and Outcomes of Liver 

Transplantation,” 808–12.

123 Benedetti et al., “Kidney Transplantation,” 509–12.

124 Wightman et al., “Prevalence and Outcomes of Liver Transplantation,” 808–12.

125 Goel et al., “Heart Transplantation in Children.”

126 See Emma Samelson-Jones, Donna M. Mancini, and Peter A. Shapiro, “Cardiac Transplantation in Adult 

Patients with Mental Retardation: Do Outcomes Support Consensus Guidelines?” Psychosomatics 53, no. 2 

(March–April 2012): 137; Wightman et al., “Prevalence and Outcomes of Heart Transplantation”; Goel et al., 

“Heart Transplantation in Children.”

127 Tran, “Organ Transplantation Eligibility,” 647.

128 Cahn-Fuller and Parent, “Transplant Eligibility,” 5–6.

129 Cahn-Fuller and Parent, “Transplant Eligibility,” 5.

130 Cahn-Fuller and Parent, “Transplant Eligibility,” 5–6.

131 Cahn-Fuller and Parent, “Transplant Eligibility,” 6.

132 Cahn-Fuller and Parent, “Transplant Eligibility,” 6.

133 “Lung Evaluation,” Penn Medicine, University of Pennsylvania, accessed February 6, 2019, https://www

.pennmedicine.org/for-patients-and-visitors/find-a-program-or-service/harron-lung-center/lung-transplant/

treatments-and-procedures/lung-evaluation; “Liver Transplant Selection and Referral Criteria,” Tampa General 

Hospital, accessed March 1, 2019, https://www.tgh.org/services/transplant/liver-transplant/liver-transplantcriteria; “Kidney Transplant,” MUSC Children’s Health, Medical University of South Carolina, accessed 

February 28, 2019, https://musckids.org/our-services/transplant-center/kidney-transplant; “Liver Transplant,” 

MUSC Children’s Health, Medical University of South Carolina, accessed February 28, 2019, https://musckids.

org/our-services/transplant-center/liver-transplant.

134 Scott D. Halpern, Peter A. Ubel, and Arthur L. Caplan, “Solid-Organ Transplantation in HIV-Infected Patients,” 

New England Journal of Medicine 347 no. 4 (2002): 284–85.

80 National Council on Disability
135 Cahn-Fuller and Parent, “Transplant Eligibility,” 5.

136 Ari Ne’eman, Steven Kapp, and Caroline Narby, Organ Transplantation and People with I/DD: A Review of 

Research, Policy, and Next Steps (Washington, DC: Autistic Self Advocacy Network, March 18, 2013), 3–4.

137 Geraldine Collins-Bride, interviewed by NCD, November 2, 2018.

138 Geraldine Collins-Bride, interviewed by NCD, November 2, 2018.

139 Autistic Self Advocacy Network, Organ Transplants for People with Disabilities: A Guide for Clinicians

(Washington, DC: Author).

140 Autistic Self Advocacy Network, Guide to Supports Available to Organ Transplant Recipients with Disabilities

(Washington, DC: Author).

141 David Orentlicher, “Destructuring Disability: Rationing of Healthcare and Unfair Discrimination Against the 

Sick,” Harvard Civil Rights-Civil Liberties Law Review 31 (Winter 1996): 49–54; Arthur L. Caplan, “Consider 

Age and Intellect When Rationing Transplant Organs?,” Medscape, December 3, 2012, www.medscape.com/

viewarticle/775211; Halpern and Goldberg, “Allocating Organs,” 299–301.

142 Orentlicher, “Destructuring Disability,” 52.

143 Julian Savulescu, “Resources, Down’s Syndrome, and Cardiac Surgery: Do We Really Want ‘Equality of 

Access’?,” BMJ 322 (April 2001): 875.

144 Savulescu, “Resources, Down’s Syndrome, and Cardiac Surgery,” 875.

145 D. Lule et al., “Life Can Be Worth Living in Locked-In Syndrome,” Progress in Brain Research 177 (2009): 

341–43, 346–47.

146 See Sarah Goering, “Rethinking Disability: The Social Model of Disability and Chronic Disease,” Current 

Reviews in Musculoskeletal Medicine 8 (2015): 134.

147 See Marthe R. Gold, David Stevenson, and Dennis G. Fryback, “HALYs and QALYs and DALYS, Oh My: 

Similarities and Differences in Summary Measures of Population Health,” Annual Review of Public Health 23 

(2002): 115–29; Greg Bognar, “QALYs, DALYs, and Their Critics,” in Routledge Companion to Bioethics, ed. 

John D. Arras, Elizabeth Fenton, and Rebecca Kukla (New York: Routledge, 2015), 44–54.

148 “What are DALYs?” Mental Health Information, National Institute of Mental Health, accessed March 13, 2019, 

https://www.nimh.nih.gov/health/statistics/global/index.shtml; Gold, Stevenson, and Fryback, “HALYs and 

QALYs and DALYS,” 117–18.

149 Trude Arnesen and Erik Nord, “The Value of DALY Life: Problems with Ethics and Validity of Disability 

Adjusted Life Years,” BMJ 319 (1999): 1424.

150 Lule et al., “Life Can Be Worth Living,” 341–43, 346–47.

151 Savulescu, “Resources, Down’s Syndrome, and Cardiac Surgery,” 875–76.

152 Ron Amundson “Disability, Ideology, and Quality of Life: A Bias in Biomedical Ethics,” in Quality of Life and 

Human Difference, ed. Wasserman, Bickenbach, and Wachbroit (Cambridge: Cambridge University Press, 

2005), 101–24; Stephen Campbell and Joseph Stramondo, “The Complicated Relationship of Disability and 

Well-Being,” Kennedy Institute for Ethics Journal 27, no. 2 (2017): 151.

153 Campbell and Stramondo, “The Complicated Relationship,” 151.

154 Goering, “Rethinking Disability,” 134.

155 Goering, “Rethinking Disability,” 134–35.

156 Wightman, Goldberg, and Diekema, “Fairness.”

157 Wightman, Goldberg, and Diekema, “Fairness”; John F. Kilner, “Chapter 10: The Pursuit of Social Benefit,” 

in Life on the Line: Ethics, Aging, Ending Patients’ Lives, and Allocating Vital Resources, ed. William B. 

Eerdmans Publishing Company (Grand Rapids, Michigan: Eerdmans, 1992), 199. 

158 “[P]hysical or mental disabilities in no way diminish a person’s right to fully participate in all aspects of 

society.” 42 U.S.C. § 12101(a)(1). “Disability is a natural part of the human experience and in no way 

diminishes the right of individuals to participate in or contribute to society.” 20 U.S.C. § 1400(c)(1).

159 Govind Persad, Alan Werthheimer, and Ezekiel J. Emanuel, "Principles for Allocation of Scarce Medical 

Interventions,” Lancet 373 (2009): 423–29; Caplan, “Consider Age”; John F. Kilner, “Selecting Patients When 

Organ Transplants and Discrimination Against People with Disabilities 81
Resources Are Limited: A Study of US Medical Directors of Kidney Dialysis and Transplantation Facilities,” 

American Journal of Public Health 78 (1988): 144–47.

160 Quality adjusted life years are designed to maximize future benefits and consider “quality of life.” Persad, 

Werthheimer, and Emanuel, "Principles for Allocation,” 425.

161 Caplan, “Consider Age.”

162 Arthur Caplan, “Bioethics of Organ Transplantation,” Cold Spring Harbor Perspectives in Medicine (2014): 1.

163 Caplan, “Bioethics of Organ Transplantation,” 5–6.

164 John Harris, "QALYfying the Value of Life," Journal of Medical Ethics 13 (1987): 119.

165 Persad, Werthheimer, and Emanuel, "Principles for Allocation,” 428–29; Harris, "QALYfying the Value,” 118–23.

166 Tran, “Organ Transplantation Eligibility,” 647–48.

167 Kilner, “Selecting Patients,” 145.

168 Harris, "QALYfying the Value,” 118–23; John Harris, "It’s Not NICE to Discriminate," Journal of Medical Ethics

31 (2005): 373–75.

169 Persad, Werthheimer, and Emanuel, "Principles for Allocation,” 423–29.

170 “How Organs Are Matched,” Transplant Living, UNOS, 2019, https://transplantliving.org/before-the-transplant/

about-organ-allocation.

171 Persad, Werthheimer, and Emanuel, "Principles for Allocation,” 423.

172 Persad, Werthheimer, and Emanuel, "Principles for Allocation,” 423–24.

173 Persad, Werthheimer, and Emanuel, "Principles for Allocation,” 423.

174 Persad, Werthheimer, and Emanuel, "Principles for Allocation,” 423.

175 Persad, Werthheimer, and Emanuel, "Principles for Allocation,” 424.

176 Persad, Werthheimer, and Emanuel, "Principles for Allocation,” 424.

177 Persad, Werthheimer, and Emanuel, "Principles for Allocation,” 424.

178 “Ethical Principles in the Allocation of Human Organs,” Organ Procurement and Transplantation Network, 

US Department of Health and Human Services, last updated June 2015, https://optn.transplant.hrsa.gov/

resources/ethics/ethical-principles-in-the-allocation-of-human-organs.

179 “Code of Medical Ethics: Organ Procurement and Transplantation,” Ethics, American Medical Association, 

accessed March 25, 2019, https://www.ama-assn.org/delivering-care/ethics/code-medical-ethics-organprocurement-transplantation.

180 Wijdicks et al., “Evidence-Based Guideline Update,” 1912–13.

181 “Ethical Principles,” Organ Procurement and Transplantation Network.

182 “Ethical Principles,” Organ Procurement and Transplantation Network.

183 “Code of Medical Ethics,” American Medical Association.

184 “Code of Medical Ethics,” American Medical Association.

185 42 U.S.C. § 12131.

186 42 U.S.C. § 12132.

187 42 U.S.C. § 12132.

188 42 U.S.C. § 12181(7).

189 42 U.S.C. § 12187.

190 42 U.S.C. § 12182(b)(2)(A)(ii).

191 42 U.S.C. § 12182(b)(2)(A)(ii).

192 28 C.F.R. § 35.130 (b) (7); 42 U.S.C. § 12182(b)(2)(A)(ii).

193 42 U.S.C. § 12182(b)(2)(A)(iii).

194 Angela T. Whitehead, “Rejecting Organs: The Organ Allocation Process and the Americans with Disabilities 

Act,” American Journal of Law & Medicine 24 (1998): 481–97.

195 Whitehead, “Rejecting Organs,” 481.

196 Timothy B. Flanagan, “ADA Analyses of the Oregon Health Care Plan,” Issues in Law and Medicine 9 

(1994): 419.

82 National Council on Disability
197 Whitehead, “Rejecting Organs,” 482.

198 “[T]he premise that the value of the life of a person with a disability is less than the value of the life of a 

person without a disability . . . is inconsistent with the ADA. . . . Any methodology that would intentionally 

ration health care resources by associating quality of life considerations with disabilities does not comport 

with the mandate of the ADA.” Flanagan, “ADA Analyses,” 410–11. “According to a 2006 review of the 

available research literature in Pediatric Transplantation, little scientific data exists that might support the idea 

that intellectual or developmental disability would constitute a heightened risk of poorer outcomes in the 

aftermath of a transplantation procedure, provided necessary supports in postoperative regimen compliance 

were provided.” Ne’eman, Kapp, and Narby, Organ Transplantation and People with I/DD: A Review of 

Research. Members of Congress requested that HHS release a guidance to “[c]larify to transplant entities 

that they must incorporate the patient’s support network and services into eligibility policies and practices. 

These networks should be assessed in conjunction with the ability of a transplantation candidate to comply 

with postoperative procedures . . . [and that] Title II of the ADA and the Rehabilitation Act requires that a 

person with a disability be provided with any auxiliary aids they need in order to access any public or federally 

funded services.” Representative Honda to Director Samuels, October 12, 2016, https://www.scribd.com/

document/327914350/2016-10-12-Members-Letter-HHS-OCR-Organ-Transplant-Discrimination.

199 Whitehead, “Rejecting Organs,” 491–92. “[R]easonable accommodation might even include the provision 

of social supports for those whose recovery is threatened by their absence.” Philip G. Peters, Jr., “Health 

Care Rationing and Disability Rights,” Indiana Law Journal 70, no. 2 (Spring 1995): 529. “[P]eople with 

disabilities who used a support system to assist with postoperative care have been no less likely to have a 

successful transplant than people without disabilities. . . . Transplant centers, hospitals, and surgeons must 

not discriminate against people with disabilities that are not medically relevant to the transplantation process.” 

Representative Honda to Director Samuels, October 12, 2016.

200 Geraldine Collins-Bride, interviewed by NCD, November 2, 2018.

201 “Some transplant centers have been able to overcome compliance problems by having frequent contact with 

their patients.” Orentlicher, “Destructuring Disability,” 66.

202 In the education context, provision of reasonable accommodations requires the school to pay for such 

accommodations “as long as the financial burden is not excessive” before applying that to the use of 

reasonable accommodations in health care. “If the principle of reasonable accommodations were applied 

to health care rationing decisions as it has been applied in non-medical contexts, health care programs 

might have to provide support services that would allow certain patients to receive benefits they might not 

otherwise receive. . . . [R]easonable accommodations would likely require the provision of these support 

services as long as it would not be unduly burdensome for the transplant program to do so.” Orentlicher, 

“Destructuring Disability,” 65–66.

203 Guidance states that a medical provider could not use surcharges to cover the cost of providing a patient 

with a disability or that patient’s companion with an interpreter because “the 1991 [ADA] title III regulation 

prohibits the imposition of surcharges to cover the costs of necessary auxiliary aids and services.” 28 C.F.R 

Appendix A to Part 36. “[P]eople with disabilities, like any patients in a program or service covered by the 

ADA or Rehabilitation Act, should be provided with all necessary auxiliary aids and services they need for a 

successful organ transplant and postoperative regimen. Specifically, Title II of the ADA and the Rehabilitation 

Act requires that a person with a disability be provided with any auxiliary aids they need in order to access any 

public or federally funded services.” Representative Honda to Director Samuels, October 12, 2016.

204 Orentlicher, “Destructuring Disability,” 55.

205 29 U.S.C. § 794(b)(3)(A).

206 Kendra Norman, “Live and Let Die: The Consequences of Oklahoma’s Nondiscrimination in Treatment Act,” 

Oklahoma Law Review 68 (Spring 2016): 604.

207 29 U.S.C. § 794(b).

208 42 U.S.C. § 18116.

Organ Transplants and Discrimination Against People with Disabilities 83
209 “Discrimination on the Basis of Disability,” Civil Rights, US Department of Health and Human Services, 

updated June 16, 2017, https://www.hhs.gov/civil-rights/for-individuals/disability/index.html.

210 “No otherwise qualified individual with a disability in the United States, as defined in section 705(20) of 

this title, shall, solely by reason of her or his disability, be excluded from the participation in, be denied the 

benefits of, or be subjected to discrimination . . . under any program or activity conducted by any Executive 

agency or by the United States Postal Service.” 29 U.S.C. § 794(a).

211 42 C.F.R § 121.8(a).

212 42 C.F.R § 121.8(b)(1).

213 Frank, “Eligibility Discrimination,” 109.

214 “OCR Resolves Disability Complaint of Individual Who Was Denied the Opportunity for Heart Transplant List 

Placement,” US Department of Health and Human Services, February 12, 2019, https://www.hhs.gov/about/

news/2019/02/12/ocr-resolves-disability-complaint-individual-who-was-denied-opportunity-heart-transplant-list

.html.

215 Jennifer L. Gibson, “Who Will Receive the Organs: Will You Receive a Life-Saving Transplant If You Have a 

Disability?,” Pacific Law Journal 28 (Spring 1997): 918.

216 Oregon House Committee on Health Care, “Public Hearings.”

217 Oregon House Committee on Health Care, “Public Hearings.”

218 Shapiro, “Dispute over Mental Competency.”

219 Shapiro, “Dispute over Mental Competency.” Ms. Cargill was later placed on the waiting list for a kidney, but 

died before she was able to receive a transplant. Shapiro, “Disabled Woman Dies.”

220 Oregon House Committee on Health Care, “Public Hearings.”

221 “Lives Worth Saving: Organ Transplantation and People with Disabilities.” July 12, 2004, https://mn.gov/

mnddc/news/pdf/archive/transplant_article6-04.pdf; Autistic Self Advocacy Network, Organ Transplants for 

People with Disabilities: A Guide for Advocates (Washington, DC: Author).

222 In a survey used to determine how intellectual disabilities factored into the decision making processes of 

pediatric transplant centers, 62 percent of programs reported that policies regarding the use of such factors 

were informal. Richards, Crawley, and Magnus, “Use of Neurodevelopmental Delay,” 843–50.

223 Frank, “Eligibility Discrimination,” 127.

224 42 U.S.C § 12134.

225 42 U.S.C § 12186 (b).

226 “Department of Justice ADA Responsibilities,” ADA.gov, Department of Justice, accessed January 31, 2019, 

https://www.ada.gov/doj_responsibilities.htm.

227 28 C.F.R. § 35.172; 28 C.F.R. § 35.190.

228 29 U.S.C. § 794(a); 28 C.F.R. § 41.4; 45 C.F.R. §§ 84-85.

229 42 U.S.C. § 18116.

230 Frank, “Eligibility Discrimination,” 126.

231 Whitehead, “Rejecting Organs,” 491.

232 “The ADA applies to medical decision making.” Bragdon v. Abbott, 524 U.S. 624, 647 (1998).

233 Whitehead, “Rejecting Organs,” 487.

234 In re Baby K, 832 F. Supp. 1022 (E.D. Va. 1993).

235 In re Baby K, 832 F. Supp. 1022, 1026 (E.D. Va. 1993); Orentlicher, “Destructuring Disability,” 59.

236 United States v. Univ. Hosp., State Univ. of New York at Stony Brook, 729 F.2d 144, 156 (2d Cir. 1984).

237 United States v. Univ. Hosp., State Univ. of New York at Stony Brook, 729 F.2d 144, 156 (2d Cir. 1984).

238 United States v. Univ. Hosp., State Univ. of New York at Stony Brook, 729 F.2d 144, 162 (2d Cir. 1984) 

(Winter, J., dissenting) (quoting S. Rep. No. 1297, 93d Cong., 2d Sess., reprinted in 1974 U.S.C. Cong. & Ad. 

News 6373, 6390).

239 United States v. Univ. Hosp., State Univ. of New York at Stony Brook, 729 F.2d 144, 162 (2d Cir. 1984) 

(Winter, J., dissenting) (emphasis in original).

84 National Council on Disability
240 In re Baby K, 832 F. Supp. 1022, 1025 (E.D. Va. 1993); “Facts about Anencephaly,” Centers for Disease 

Control, accessed January 31, 2019, https://www.cdc.gov/ncbddd/birthdefects/anencephaly.html.

241 The hospital argued that an exception from the EMTALA obligation to provide care where the “treatment at 

issue is deemed ‘futile’ or ‘inhumane’ by the hospital physicians” should apply. The hospital also sought to 

establish that its withholding of treatment did not violate Section 504, even though it admitted that it was 

withdrawing care because of Baby K’s disability, and sought a similar exemption under the ADA based on its 

argument that the treatment would be futile. In re Baby K, 832 F. Supp. 1022, 1026–29 (E.D. Va. 1993).

242 In re Baby K, 832 F. Supp. 1022, 1031 (E.D. Va. 1993).

243 Matter of Baby K, 16 F.3d 590, 596 (4th Cir. 1994) (internal quotation marks and citations omitted).

244 See Bragdon v. Abbott, 524 U.S. 624, 647 (1998).

245 See Bragdon v. Abbott, 524 U.S. 624, 647 (1998).

246 See Bragdon v. Abbott, 524 U.S. 624, 649 (1998).

247 See Bragdon v. Abbott, 524 U.S. 624, 649–50 (1998).

248 See Miller v. Spicer, 822 F.Supp. 158, 164 (1993).

249 In re Baby K, 832 F. Supp. 1022 (E.D. Va. 1993).

250 28 U.S.C. § 36.302(b)(2).

251 “Settlement Agreement Regarding the George Washington University Medical Center Under the Americans 

with Disabilities Act of 1990,” ADA.gov, Department of Justice, accessed February 13, 2019, https://www.ada

.gov/gwmedic.htm. The hospital’s policy was furthermore required to clarify that, “[i]t would be inappropriate 

to deny or discourage surgery or another procedure for a patient with HIV or AIDS merely because of a 

generalization that patients with HIV or AIDS are too sick to benefit from the surgery or procedure, without 

appropriately considering the patient’s own condition.” Department of Justice, “Washington, D.C. Area 

Hospital Agrees to New Policy for Treating Patients with HIV, Under Agreement with Justice Department,” 

March 10, 1998, accessed July 25, 2019, https://www.justice.gov/archive/opa/pr/1998/March/https://www

.justice.gov/archive/opa/pr/1998/March/106.htm.html106.htm.html.

252 In a survey used to determine how intellectual disabilities factored into the decision- making processes of 

pediatric transplant centers, 62 percent of programs reported that policies regarding the use of such factors 

were informal. Richards, Crawley, and Magnus, “Use of Neurodevelopmental Delay,” 843–50.

253 For an analysis of these state laws, see Chapter 4.

254 “Candidacy Criteria,” St. Joseph Hospital Kidney Transplant Center, accessed February 6, 2019, https://www

.sjo.org/our-services/kidney-transplant-center/kidney-transplant-candidates.

255 “Lung Evaluation,” Penn Medicine, University of Pennsylvania, accessed February 6, 2019, https://www

.pennmedicine.org/for-patients-and-visitors/find-a-program-or-service/harron-lung-center/lung-transplant/

treatments-and-procedures/lung-evaluation.

256 “Kidney Transplant Selection Criteria,” Penn Medicine, University of Pennsylvania, accessed February 6, 

2019, https://www.pennmedicine.org/~/media/documents%20and%20audio/patient%20guides%20and%20

instructions/transplant/kidney_transplant_selection_criteria.ashx?la=en.

257 “Who Is a Liver Transplant Candidate?,” University of Pittsburgh Medical Center, accessed February 6, 2019, 

https://www.upmc.com/services/transplant/liver/candidates.

258 “A Patient’s Guide to Pre-Transplantation,” Oregon Health and Science University, accessed February 6, 2019, 

https://www.ohsu.edu/xd/health/services/transplant/liver/pre-transplant/education-and-protocols/upload/preliver-patients-guide.pdf; “Kidney Transplant Family Education Class,” Oregon Health and Science University, 

accessed February 6, 2019, https://www.ohsu.edu/xd/health/services/transplant/kidney/pre-transplant/upload/

Kidney_Transplant_Patient-Education-Slideshow_04_10_17.pdf; “Path to Surgery,” UC Health, accessed 

February 6, 2019, https://uchealth.com/transplant/transplant-program/path-to-surgery; “Heart Transplantation,” 

Montefiore, accessed February 6, 2019, https://www.montefiore.org/heart-transplantation; “Eligibility,” 

University of Rochester Medical Center, accessed February 6, 2019, https://www.urmc.rochester.edu/

transplant/kidney-pancreas/eligibility.aspx.

Organ Transplants and Discrimination Against People with Disabilities 85
259 “Transplant Candidate Education Program,” Barnabus Health, accessed February 6, 2019, https://www.rwjbh

.org/documents/SBMC/sbmc2174-Updated-BH-Trnsplt-Kidney-Ed.-Prog-single-pgs-m2.pdf.

260 “Transplant Evaluation of Adults 70 Years or Older,” Stanford School of Medicine, accessed February 6, 

2019, https://stanfordhealthcare.org/content/dam/SHC/clinics/kidney-transplant-program/docs/Kidney%20

Transplant%20Evaluation%20for%20Older%20Adults.pdf.

261 See note 204.

262 “Evaluation for Lung Transplant Surgery,” Columbia University’s Center for Advanced Lung Disease and 

Transplantation, accessed February 6, 2019, http://columbiasurgery.org/lung-transplant/evaluation-lungtransplant-surgery.

263 “Receiving a Kidney,” University of Florida Health, accessed March 1, 2019, https://ufhealth.org/transplantcenter/living-transplant-kidney.

264 “Liver Transplant Selection and Referral Criteria,” Tampa General Hospital, accessed March 1, 2019, https://

www.tgh.org/services/transplant/liver-transplant/liver-transplant-criteria.

265 “Having an HIV-positive status . . . [h]aving a documented history of unjustified non-compliance with medical 

regimens . . . [and h]aving a diagnosed active or uncontrolled psychiatric disorder” are among the hospital’s 

contraindications to kidney transplant. “Kidney Transplant Guidelines,” Tampa General Hospital, accessed 

March 1, 2019, https://www.tgh.org/kidney-transplant-guidelines.

266 NCD did not complete an exhaustive search. Other transplant centers likely have similar language regarding 

absolute or relative contraindications to transplant.

267 “Kidney and Kidney/Pancreas Transplant Programs,” UK HealthCare, University of Kentucky, accessed 

March 1, 2019, https://ukhealthcare.uky.edu/transplant-center/services/kidney-pancreas-transplant-program; 

“Kidney Transplant,” Banner Health, accessed March 1, 2019. https://www.bannerhealth.com/health-library/

content?contentTypeID=92&contentID=P07708; “Heart Transplant,” UC Health, accessed March 1, 2019, 

https://www.uchealth.org/services/transplant-services/tests-and-procedures/92,P07974; “Kidney Transplant,” 

UC Health, accessed March 1, 2019, https://www.uchealth.org/services/transplant-services/tests-andprocedures/92,P07708; “Liver Transplant,” UC Health, accessed March 1, 2019, https://www.uchealth

.org/services/transplant-services/tests-and-procedures/92,P07698; “Kidney Transplant,” MUSC Children’s 

Health, Medical University of South Carolina, accessed February 28, 2019, https://musckids.org/our-services/

transplant-center/kidney-transplant.

268 “Kidney Transplant,” MUSC Children’s Health, Medical University of South Carolina, accessed February 

28, 2019, https://musckids.org/our-services/transplant-center/kidney-transplant; “Liver Transplant,” MUSC 

Children’s Health, Medical University of South Carolina, accessed February 28, 2019, https://musckids.org/

our-services/transplant-center/liver-transplant.

269 “Kidney and Kidney/Pancreas Transplant Programs,” UK HealthCare, University of Kentucky, accessed March 1, 

2019, https://ukhealthcare.uky.edu/transplant-center/services/kidney-pancreas-transplant-program.

270 “OCR Resolves Disability Complaint,” US Department of Health and Human Services.

271 “Need for Legal Protection Against Organ Transplant Discrimination on the Basis of Disability,” Developmental 

Disabilities Coalition, accessed January 22, 2019, http://www.ndss.org/wp-content/uploads/2017/10/MDSB792-SampleFactSheet.pdf.

272 A screenshot of UMMC’s website from March 17, 2015 was submitted along with testimony to verify 

that policy as of the date of the debate had removed “severe mental retardation” from its list of absolute 

contraindications to transplant. “Testimony in Support of S.B. 792 Public Health—Nondiscrimination in Access 

to Anatomical Gifts and Organ Transplantation,” Developmental Disabilities Coalition, March 18, 2015.

273 “Entering the Transplant Program,” University of Maryland Medical Center, accessed February 7, 2019, https://

www.umms.org/ummc/health-services/transplant/patient-information/entering-program.

274 S.B. 455, 2019 Leg., 2019–2020 Reg. Sess. (N.Y. 2019).

275 Substitute S.B. 5405, 2019 Leg., 2019 Reg. Sess. (Wash. 2019).

86 National Council on Disability
276 Gibson, “Who Will Receive,” 916.

277 Cal. Health & Safety Code § 7151.35(a) (West 2008).

278 Cal. Health & Safety Code § 7151.35(c) (West 2008).

279 Cal. Health & Safety Code § 7151.35(d) (West 2008).

280 Cal. Health & Safety Code § 7151.35(b) (West 2008).

281 N.J. Stat. Ann. § 26:6-86.1-26:6-86.2 (West 2013).

282 Susan K. Livio, “Christie Signs Bill Banning Hospitals and Doctors from Denying Disabled People Organ 

Transplants,” NJ.com, July 18, 2013, https://www.nj.com/politics/index.ssf/2013/07/bill_banning_hospitals_

and_doctors_from_denying_disabled_people_organ_transplants_now_law.html; Michelle Diament, 

“Following Controversy, Girl with Disability Receives Transplant,” Disability Scoop, August 1, 2013, https://

www.disabilityscoop.com/2013/08/01/following-receives-transplant/18431; Susan K. Livio, “Bill to Prevent 

Discrimination Against Disabled People in Need of Transplants Gets Panel Approval,” NJ.com, March 8, 2012, 

https://www.nj.com/news/index.ssf/2012/03/nj_senate_panel_approves_bill_10.html.

283 See Tran, “Organ Transplantation Eligibility,” 653; Frank, “Eligibility Discrimination,” 115.

284 N.J. Stat. Ann. § 26:6-86.2 (West 2013); Frank, “Eligibility Discrimination,” 115.

285 Md. Code Ann., Health-Gen. § 20-1601-§ 20-1606 (West).

286 Tran, “Organ Transplantation Eligibility,” 650, 653.

287 Tran, “Organ Transplantation Eligibility,” 650; Samantha Crane, “We Wrote It—Now It’s the Law!,” Autistic Self 

Advocacy Network, April 28, 2015, https://autisticadvocacy.org/2015/04/we-wrote-it-now-its-the-law.

288 Mass. Gen. Laws Ann. ch. 111, § 236 (West).

289 Andy Metzger, “Organ Donation Discrimination Banned Under Bill on Gov. Baker’s Desk,” State House 

News Service, November 23, 2016, https://www.masslive.com/politics/index.ssf/2016/11/organ_donation_

discrimination.html.

290 Metzger, “Organ Donation Discrimination Banned.”

291 Or. Rev. Stat. Ann. § 442.765 (West).

292 Chris Gray, “Legislature Paves Way for Organ Transplants for People with Disabilities,” Lund Report, June 5, 

2017, https://www.thelundreport.org/content/legislature-paves-way-organ-transplants-people-disabilities.

293 See Gray, “Legislature Paves Way.”

294 Or. Rev. Stat. Ann. § 442.765(8) (West).

295 Del. Code Ann. tit. 16, § 2743(b) (West)

296 Del. Code Ann. tit. 16, § 2743(c) (West).

297 Del. Code Ann. tit. 16, § 2743(d) (West).

298 Kan. Stat. Ann. § 65-3276 (West).

299 Ohio Rev. Code Ann. § 2108.36 (West).

300 20 Pa. Stat. and Cons. Stat. Ann. § 8613(i) (West).

301 Tran, “Organ Transplantation Eligibility,” 654.

302 Tran, “Organ Transplantation Eligibility,” 654.

303 20 Pa. Stat. and Cons. Stat. Ann. § 8613(i)(1) (West).

304 “Sandra Jensen Needed a Heart-Lung Transplant, But Several Hospitals Did Not Believe a Woman with Down 

Syndrome Was a Good Candidate for Surgery,” Disability Rights California, accessed September 19, 2018, 

https://www.disabilityrightsca.org/stories/sandra-jensen-needed-a-heart-lung-transplant-but-several-hospitalsdid-not-believe-a-woman; Livio, “Christie Signs Bill.”

305 See Frank, “Eligibility Discrimination,” 111, 113; Emily Largent, “State-Level Solutions to Discrimination in 

Organ Transplants,” Bill of Health (blog), Harvard Law Petrie-Flom Center, June 7, 2018, http://blogs.harvard

.edu/billofhealth/2018/06/07/state-level-solutions-to-discrimination-in-organ-transplants.

306 Gibson, “Who Will Receive,” 916, 919; “Sandra Jensen,” Disability Rights California; Celeste Fremon, 

“‘. . . We Do Not Feel That Patients with Down Syndrome Are Appropriate Candidates for Heart-Lung 

Organ Transplants and Discrimination Against People with Disabilities 87
Transplantation.’: These Words Were a Death Sentence for Sandra Jensen. And That, She Decided, Just 

Wasn’t Going to Happen,” Los Angeles Times, April 14, 1996, http://articles.latimes.com/1996-04-14/

magazine/tm-58423_1_sandra-jensen.

307 Gibson, “Who Will Receive,” 916, 919; “Sandra Jensen,” Disability Rights California.

308 “Sandra Jensen,” Disability Rights California.

309 “Sandra Jensen,” Disability Rights California.

310 Gibson, “Who Will Receive,” 916, 919; “Sandra Jensen,” Disability Rights California.

311 Gibson, “Who Will Receive,” 916–17.

312 Frank, “Eligibility Discrimination,” 112–13.

313 Cal. Health & Safety Code § 7150.10 (West).

314 Cal. Health & Safety Code § 7151.35(d) (West 2008).

315 Cal. Health & Safety Code § 7151.35(d) (West 2008).

316 Frank, “Eligibility Discrimination,” 113.

317 Autistic Self Advocacy Network, Model Legislation: An Act Concerning Nondiscrimination in Access to Organ 

Transplantation (Washington, DC: Author); Crane, “We Wrote It.”

318 Tran, “Organ Transplantation Eligibility,” 653; Autistic Self Advocacy Network, Model Legislation; Crane, 

“We Wrote It.”

319 Md. Code Ann., Health-Gen. § 20-1605(b)(1).

320 Md. Code Ann., Health-Gen. § 20-1605(a)(5).

321 Md. Code Ann., Health-Gen. § 20-1605(a)(5).

322 Md. Code Ann., Health-Gen. § 20-1605(c).

323 Md. Code Ann., Health-Gen. § 20-1605(d).

324 Md. Code Ann., Health-Gen. § 20-1601(c)(3).

325 Md. Code Ann., Health-Gen. § 20-1606.

326 Md. Code Ann., Health-Gen. § 20-1606.

327 Mass. Gen. Laws Ann. ch. 111, § 236 (West). (Note that Massachusetts’ legislation, while it provides for a 

wider array of remedies, does not provide priority review.)

328 Jessica Sunshine Bodey, “My Son Has Autism. Discrimination Almost Cost Him His Life,” Washington Post, 

August 31, 2017, https://www.washingtonpost.com/opinions/my-son-has-autism-discrimination-almost-costhim-his-life/2017/08/30/b899dc58-88e8-11e7-961d-2f373b3977ee_story.html?noredirect=on&utm_term=

.d6c23c04201a.

329 Bodey, “My Son Has Autism.”

330 Bodey, “My Son Has Autism.”

331 Kelly Ardis, “Life for Lief,” Register-Guard, December 15, 2012, https://www.registerguard.com/article/

20121215/news/312159955

332 Oregon House Committee on Health Care, “Public Hearings.”

333 Stanford Health Care, “Left Ventricular Assist Device (LVAD),” accessed February 27, 2018, https://

stanfordhealthcare.org/medical-treatments/l/lvad.html.

334 Bodey, “My Son Has Autism.” Washington Post states that Lief had “nearly half a dozen” open-heart 

surgeries, which is consistent with Bodey’s statements in NCD’s interview with her.

335 Oregon House Committee on Health Care, “Public Hearings.”

336 Tran, “Organ Transplantation Eligibility,” 654.

337 Representative Honda to Director Samuels, October 12, 2016.

338 Largent, “State-Level Solutions.”

339 Autistic Self Advocacy Network, A Guide for Advocates.

340 Autistic Self Advocacy Network, Model Legislation.

341 Md. Code Ann., Health-Gen. § 20-1601-§ 20-1606.

88 National Council on Disability
342 Autistic Self Advocacy Network, A Guide for Advocates.

343 Autistic Self Advocacy Network, A Guide for Advocates.

344 See note 109.

345 Md. Code Ann., Health-Gen. § 20-1601(c); Md. Code Ann., Health-Gen. § 20-1605(c); Md. Code Ann., 

Health-Gen. § 20-1605(d).

346 Md. Code Ann., Health-Gen. § 20-1601(c); Md. Code Ann., Health-Gen. § 20-1605(c); Md. Code Ann., 

Health-Gen. § 20-1605(d).

Organ Transplants and Discrimination Against People with Disabilities 89
National Council on Disability 

1331 F Street, NW, Suite 850 

Washington, DC 20004