People with intellectual and/or developmental disabilities (IDD) are less likely to receive organ transplants than peers without IDD,1 partially because of disability-based discrimination. There is a growing national momentum to enact and enforce policies to improve equitable access to organ transplants for all patients, including those with IDD.2 ,3 Forty US states have laws prohibiting disability-based discrimination in the organ transplant process (eTable 1 in Supplement 1). These laws differ in the inclusion of 2 specific strengthening provisions: (1) private right of action, which allows private individuals (instead of the government or other federal regulator) to file lawsuits in defense of their rights, and (2) expedited case review, which allows legal cases filed under these statutes to be heard by the court faster given the time-sensitive nature of transplant. We examined the extent to which antidiscrimination laws, and their associated provisions, mitigate disparities in rates of transplant evaluation and receipt for patients with end-stage kidney disease (ESKD) with IDD vs without IDD.

Discussion

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. 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.

Our findings may reflect challenges in translating legal protections into clinical practice changes. 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. Consequently, legislation alone may be insufficient to eliminate disparities without complementary efforts to improve transparency, accountability, and oversight.

Proposed strategies to mitigate disparities for other marginalized populations may also be beneficial for people with IDD.5,6 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.6 Improving transparency in the transplant committee selection process by allowing patient or advocate participation has also been posited as a solution.5 Finally, there is a need for data registries to monitor candidates’ progress through the transplant care pathway by social determinants of health to identify systemic and structural barriers to transplant access.

Limitations include a lack of measures of transplant appropriateness or social support. We could not ascertain whether patients chose not to pursue evaluation or transplant but could have. Other limitations were related to cohort identification, data capture, and measurement of transplant access.

Advocacy efforts that strengthen antidiscrimination legislation, reduce clinician implicit bias, and mandate transparency in transplant center decision-making are needed to create equitable access to this lifesaving therapy for kidney transplant candidates with IDD. Ensuring equitable access to organ transplant requires that people with IDD are holistically evaluated for eligibility without IDD-specific contraindications or bias.