Laws on the books, gaps in practice

Thirty-nine U.S. states have enacted laws since 2013 to protect people with disabilities from discrimination in organ transplantation — but a new study published in JAMA Internal Medicine suggests those protections aren't translating into real-world equity. Researchers from Ohio State University analyzed Medicare data from over 61,000 patients and found that people with intellectual and developmental disabilities (IDDs) remain far less likely to be evaluated for or receive a kidney transplant compared to those without IDDs.

The study authors point to several reasons the laws may be falling short: no known legal cases have been brought under these statutes, many patients and families may be unaware of their rights, and navigating the legal system is costly and complex. Researchers are calling for a more transparent, measurable transplant pipeline where every stage — from referral to surgery — is tracked and documented.

By the Numbers

• Patients with IDDs were 22% less likely to receive a transplant evaluation (IRR = 0.78)
• They were 38% less likely to undergo transplantation (IRR = 0.62)
• Study reviewed data from 12,730 IDD patients vs. 49,199 non-IDD patients (2013–2023)

Why it matters: Anti-discrimination laws are only as effective as their enforcement. Without awareness, accountability, and systemic transparency, vulnerable patients continue to fall through the cracks of an otherwise sophisticated transplant system.