Kidney Transplant Disparities Persist With Intellectual, Developmental Disability

Despite anti-discrimination laws, patients with end-stage kidney disease (ESKD) and intellectual or developmental disabilities (IDD) were significantly less likely to be evaluated for or receive a kidney transplant, a Medicare analysis found.

Transplant evaluation was 22% less likely and receipt of a new kidney 38% less likely among nearly 13,000 individuals with IDD — including conditions such as autism, cerebral palsy, and Down syndrome — when compared with matched controls, reported Brittany Hand, PhD, of the Ohio State University in Columbus, and colleagues.

Passage of anti-discrimination laws didn’t correlate significantly with reduced disparities in evaluation or receipt rates, the authors noted in a JAMA Internal Medicine research letter.

“This study adds to a national discourse about the need for transparency and equal access to organ transplant for all, including people with IDD and other populations,” the researchers wrote.

“While antidiscrimination laws are important in advancing equity for patients with ESKD and IDD, these laws are not associated with more equitable rates of evaluation or receipt of kidney transplant,” Hand and co-authors continued.

Currently, 40 states have laws prohibiting disability-based discrimination in the organ transplant process. These statutes vary in inclusion of two key enforcement mechanisms:

• Private right of action (PRA): Grants individuals, rather than government regulators, the legal authority to directly sue in court to protect their rights
• Expedited case review (ER): Fast-tracks legal proceedings filed under these statutes to account for the urgent, time-sensitive nature of transplants

However, among patients with IDD, there was no significant difference in rates of transplant evaluation or receipt when state laws contained PRA provisions, ER provisions, or both.

The findings “may reflect challenges in translating legal protections into clinical practice changes,” the researchers noted, adding that discriminatory treatment can be difficult to identify and prove even when legal protections exist.

“Awareness of protections and resources to challenge potential discrimination may vary among people with IDD and their families,” they continued. “Consequently, legislation alone may be insufficient to eliminate disparities without complementary efforts to improve transparency, accountability, and oversight.”

To address these gaps, Hand and her team called for advocacy efforts to strengthen anti-discrimination legislation, reduce implicit clinician bias, and mandate transparency in transplant center decision-making.

Proposed strategies to mitigate disparities in other marginalized populations could also benefit patients with IDD, the researchers suggested. “For example, electronic health record-based registries may be able to systematically identify and automatically refer eligible candidates for evaluation to circumvent potential physician biases at the referral stage.”

“Improving transparency in the transplant committee selection process by allowing patient or advocate participation has also been posited as a solution,” they added. “Ensuring equitable access to organ transplant requires that people with IDD are holistically evaluated for eligibility without IDD-specific contraindications or bias.”

For the study, researchers analyzed 2013-2023 Medicare Standard Analytical Files to identify ESKD patients of all ages with and without IDD. The propensity score-matched cohorts included 12,730 patients with IDD and 49,199 controls. Cohorts were matched on sex (about 62% male), race and ethnicity, state law provisions, birth year, follow-up duration, comorbidities, frailty, estimated income, and distance to the nearest transplant center.

Models were controlled for calendar month, year, and state-level covariates from the U.S. Census Bureau.

The incidence rate ratio (IRR) was significantly lower for persons with IDD compared with matched controls for both transplant evaluation (IRR 0.78, 95% CI 0.75-0.81) and transplant receipt (IRR 0.62, 95% CI 0.57-0.66).

All sensitivity analyses yielded results consistent with the primary findings, including when restricting the analysis to patients who remained in-state for transplantation and to states that implemented law changes during the study period.

Key limitations acknowledged by the researchers included missing data on clinical appropriateness and social support, as well as an inability to identify patients who voluntarily declined evaluation or transplantation. Factors surrounding cohort selection, data collection, and access metrics further limited the findings.