Key takeaways:

• Patients with intellectual and developmental disabilities had lower evaluation and transplant rates vs. patients without disabilities.
• Antidiscrimination laws were not associated with transplant outcomes.

Many U.S. states have passed laws prohibiting disability-based discrimination, but patients with intellectual and developmental disabilities continue to face disparities in access to kidney transplants, according to study data.

The first law protecting organ transplant recipients from disability-based discrimination was passed in 1996 under a revision to California’s Uniform Anatomical Gifts Act, according to study background. Thirty-nine states have followed with their own antidiscrimination legislation between 2013 and 2023, with two primary provisions established. The first provision requires cases of disability-based discrimination to be expedited for review in court. The second provision, the private right of action, allows private individuals to file lawsuits rather than federal regulators.

Data derived from Hand BN, et al. JAMA Intern Med. 2026;doi:10.1001/jamainternmed.2026.4392.

Brittany N. Hand, PhD, OTR/L, associate professor in the department of internal medicine at Ohio State University, and colleagues examined whether these laws have reduced disparities for patients with intellectual and developmental disabilities (IDDs) in need of a kidney transplant.

“Patients with intellectual and developmental disabilities should be given full, holistic consideration about whether or not they would be a good candidate for a kidney transplant, and that should be independent of whether or not they have a disability,” Hand told Healio.

In a claims analysis, the researchers reviewed data from the 2013-2023 Medicare Standard Analytical Files to compare evaluation and kidney transplantation rates between 12,730 patients with IDDs (62.1% men; 61.8% white) and 49,199 patients without IDDs (61.8% men; 61.2% white). They also assessed whether the passage of antidiscrimination laws had an impact on evaluation and transplantation rates. The data were published in JAMA Internal Medicine.

“We defined IDD based on if a patient had an ICD-10 diagnosis code for intellectual disabilities, pervasive developmental disorders, including autism, cerebral palsy or Down syndrome,” Hand said. “There are certainly other intellectual or developmental disabilities, but those are the ones that we specifically focused on in this study.”

Results showed fewer patients with IDDs received a kidney transplant evaluation (incidence rate ratio [IRR] = 0.78; 95% CI, 0.75-0.81) or underwent transplantation (IRR = 0.62; 95% CI, 0.57-0.66) compared with patients without IDDs.

No associations were observed between any antidiscrimination law and transplant outcomes. According to Hand, a few factors may explain the lack of association.

“As far as we are aware, there has not been a case brought against these statutes, meaning no damages awarded or any kind of penalties,” she said. “It’s also possible that people with IDD and their families might not know that these protections are available to them.”

Additionally, a case of discrimination in the kidney transplant process may be difficult to prove in court, Hand said.

“Accessing the legal system can be cost prohibitive and requires time, resources and knowledge of the legal system,” she said.

With limited improvement in transplant outcomes for patients with IDDs, a clearer pathway to transplantation is needed, according to the researchers.

“We would love to see a transparent and measurable pathway where every stage in the transplant pipeline is recorded and measurable,” Hand said. “Another important step will be having a system where the absence of referral, evaluation or transplantation is more clearly explained.”

“The U.S. has one of the most sophisticated systems for transplant in the world, and critical self-appraisal has historically led to improvement,” researcher Austin D. Schenk, MD, PhD, transplant surgeon at The Ohio State University Wexner Medical Center, told Healio. “There’s a large national effort underway called the Organ Procurement and Transplantation Network modernization initiative, which is founded upon greater transparency in the transplant process. We support the idea behind this initiative and hope that our research will add to the discourse around increasing transparency and equity in the transplant process.”

For more information:

Brittany N. Hand, PhD, OTR/L, can be reached at brittany.hand@osumc.edu.

Austin D. Schenk, MD, PhD, can be reached at austin.schenk@osumc.edu.