Study finds adults with developmental disabilities face disparities in kidney transplantation

Despite similar surgical outcomes, adults with intellectual and developmental disabilities (IDD) are less likely to be evaluated for and receive a kidney transplant, according to a new study from The Ohio State University College of Medicine.

The research, published in JAMA Surgery, is a United States national study of all adults with end stage renal disease (ESRD). Researchers found adults with IDD were 54% less likely to be evaluated for and 62% less likely to receive a kidney transplant than those without IDD. However, among those who received a kidney transplant, IDD was not a risk factor for perioperative complications, 90-day readmission or 1-year graft rejection.

"There's a growing demand for organ transplants that outpaces the supply of donor organs, requiring transplant centers to prioritize which patients to put on transplant waitlists," said Brittany Hand, lead author and assistant professor at the School of Health and Rehabilitation Science.

"But IDD should not categorically disqualify adults from transplants. Our findings show that despite existing protections, like the Americans with Disabilities Act, people with IDD continue to be discriminated against in the organ transplant process. This underscores the need for anti-discrimination initiatives to promote equitable care for this population."

Researchers evaluated Medicare data of 21,384 adults with ESRD (10,692 with IDD) and 1,258 kidney transplant recipients (629 with IDD). Since all individuals in the United States with ESRD are eligible for Medicare, this data provides a comprehensive look at the prevalence of kidney transplantation among adults with and without IDD.

"Organ transplantation is a lifelong care-intensive undertaking and some adults with IDD, like those without IDD, may not be strong transplant candidates," Hand said. "However, adults with IDD legally have a right to equal access to evaluation and full, holistic consideration as to whether they would be good transplant candidates."

Based on their findings, the researchers recommend policies to improve transparency and reduce disparities in transplant allocation, and anti-discrimination continuing education materials for medical professionals.

"This topic is timely, given federal consideration of the Charlotte Woodward Organ Transplant Discrimination Prevention Act (US House Bill 1235)," Hand said. "There are also now 34 states with laws that prohibit this discrimination, the most recent of which is Michigan where House Bill 4762 passed in December 2022."