View a new resource from the Center For Dignity in Healthcare for People with Disabilities: Organ Transplant Protections for People with Disabilities in States and Territories.
The discrimination continues despite laws and policies designed to prevent it.
The Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act apply throughout the organ transplantation process as civil rights protections—disability should only be considered to the extent it expressly impairs a successful transplantation. However, people with intellectual and developmental disabilities continue to face discrimination in the organ transplantation process – despite broad federal anti-discrimination laws, state organ transplant anti-discrimination laws, and various policies that aim to prevent such discrimination.
How Disability Is Considered When Matching an Organ to Someone Who Needs It
The Organ Procurement and Transplantation Network (OPTN), a nonprofit organization, establishes transplant-matching criteria for the U.S. Under OPTN policy, the “[a]llocation of deceased donor organs must not be influenced positively or negatively by political influence, national origin, ethnicity, sex, religion, or financial status.” Notably, disability status is missing from this list.
Managing the country’s organ transplant system is the United Network for Organ Sharing (UNOS), a nonprofit organization based in Richmond, Virginia, that is under contract with the federal government. While UNOS matches donors and candidates, transplant hospitals are responsible for accepting an individual as a transplant candidate and adding them to the UNOS transplant list. The UNOS Ethics Committee has established organ recipient criteria: life expectancy, organ failure caused by behavior, likely compliance/adherence to post-transplant requirements, repeat transplantation and alternative therapies. However, the established UNOS criteria also fail to protect people with disabilities as recipients.
Both OPTN and UNOS approach transplant criteria differently. The OPTN’s policy outlines discrimination factors which cannot be considered, while the UNOS criteria list matching requirements. Neither approach make clear that disability cannot be a basis for discrimination. As a consequence of the vagueness in the language with respect to disability status, there is, arguably, a tacit license to discriminate on the basis of disability.
Because individual hospitals or hospital systems performing transplants may develop their own guidelines for the consideration of transplant candidates, the lack of oversight permits discrimination against people with disabilities. For example, historically, “psychosocial evaluations of potential transplant candidates have been conducted,” according to the OPTN. A 2008 survey conducted by the Stanford Center for Biomedical Ethics found that 43 percent of pediatric transplant centers “always” or “usually” consider neurodevelopmental delay in listing a child for an organ transplant. “Most transplant programs in the United States use some type of nonmedical evaluation of patients for transplantation,” according to the OPTN. By including these types of nonmedical criteria, people with disabilities are disproportionately affected.
Hillary’s Story
At 18 months old, Jim R.’s daughter, Hillary, developed a high fever that lasted for five days. Several months later, Hillary developed a slew of symptoms, including unwavering seizures[1]. Her verbal skills deteriorated. Within a few years, Hillary’s kidneys began to fail. Hillary was placed on the Virginia transplant list not long after her kidneys failed and she began dialysis. Jim was told Hillary would be matched with a kidney in fewer than three years.
Many times during Hillary’s childhood, Jim was called in the middle of the night to bring Hillary to the hospital to receive a new kidney, but each time, she was inevitably sent home, and the kidney went to another person. It seemed to Jim that Hillary was constantly passed over. It was hard not to think there was an asterisk next to her name because of her complex disabilities, Jim says. At one point, Jim recalls, a 2-year-old received the kidney meant for Hillary—after Hillary had been waiting on the list for more than two years to receive one.
Jim writes in his book, “Fragile Innocence” that “Hillary’s own nephrologist … had qualms, at least in the abstract, about the principle of ‘wasting’ precious organs in short supply on handicapped persons.” But Jim was assured by Hillary’s doctors that the matching process was one of lists and objective criteria. Hillary was listed—and that was the most critical step in the process.
Hillary stayed on Virginia’s waiting list for a new kidney for six years. When Jim heard the wait for a kidney in the Midwest was shorter, averaging fewer than two years, he switched Hillary to the Iowa list. But two more years passed, and Hillary still did not receive a new kidney. Just before switching Hillary back to the Virginia list—after more than eight years of waiting—Hillary finally received a kidney in Iowa City.
Organ Transplantation and Discrimination
The transplant-matching process is vulnerable to discrimination at several stages. Doctors and hospitals sometimes do not add children with disabilities to an organ transplant list because of a variety of misconceptions and biases. A common set of biases includes the false assumptions that children with intellectual and developmental disabilities do not deserve to be put on the list because they have a lesser quality or length of life or are not likely to adhere to post-transplant requirements.
In the May 2020 issue of the journal Pediatrics, the American Academy of Pediatrics (AAP) Committee on Bioethics and Council on Children with Disabilities documented a new policy in the article, Children with Intellectual and Developmental Disabilities as Organ Transplantation Recipients. The policy states that “denying transplantation to people with disabilities on the basis of their disability and supposed lower quality of life may constitute illegal and unjustified discrimination.” according to the article. The committee highlighted “[c]orrespondence in October 2016 from the U.S. Congress to Jocelyn Samuels, [in which] the director of the Office for Civil Rights in the U.S. Department of Health and Human Services (HHS) urged the agency to address what Congress called ‘persistent’ organ transplant discrimination. The letter called for guidance from the HHS clarifying that denying an organ transplant on the basis of a person’s disability would violate the ADA.”
The AAP policy establishes that “[t]he most appropriate outcomes to consider when determining if a patient should be evaluated or listed for transplant are organ and patient survival, with the same minimum thresholds for all patients with or without developmental disability.”
Because people with disabilities have continued to face discrimination in the allocation of organs for transplantation, 16 states have adopted additional protections in their state laws. But just as discrimination continues to occur despite ADA protections, the same still occurs in states with additional protections.
Although Hillary did eventually get her kidney, neither Iowa nor Virginia has additional protections in their statutes for people with disabilities in the organ transplantation process. Advocacy and education are needed to improve both policy and practice in ending discrimination on the basis of disability throughout the organ transplantation process.
[1] Hillary remains on medication to control her seizures.
AUCD Policy Talk 