Following years of concerns about people with disabilities being denied organ transplants, federal officials are seeking public comment and Congress could be poised to do something about it too.

Multiple families have come forward in the last decade alleging that doctors have denied their loved ones needed organ transplants because of their intellectual or developmental disabilities. In one case, the U.S. Department of Health and Human Services’ Office for Civil Rights brokered a resolution with the University of North Carolina Health Care system in 2019 after a complaint alleged that a doctor there determined that an individual with an intellectual disability would not be a good candidate for a heart transplant because of the person’s disabilities and the fact that the individual did not live independently.

Now federal health officials are considering broader changes to the nation’s organ transplant system with an eye toward addressing the disparities facing people with disabilities and other groups.

The Centers for Medicare & Medicaid Services says it is seeking feedback from the public to identify “potential system-wide improvements.”

“Organ donation is a precious gift, and we owe it to recipients, donors, those awaiting organs and their loved ones to ensure our transplantation system is safe, efficient and equitable,” said CMS Administrator Chiquita Brooks-LaSure. “We are seeking input on ways to improve organ donation and transplantation and are committed to engaging all stakeholders throughout our policy development process. This effort is extremely important for supporting organ transplants for communities of color, individuals with disabilities and other historically underserved populations.”

In a notice published in the Federal Register this month about the public comment period, CMS acknowledges that “organ transplantation and donation in the United States remains highly inequitable.” The agency cites a 2019 report from the National Council on Disability which found that people with disabilities are frequently denied equal access to transplants and providers often falsely assume that individuals in this population — especially those with intellectual disabilities — will have worse outcomes after receiving transplants than others.

“This inequity exists despite numerous federal and state prohibitions on discrimination on the basis of race, color, national origin and disability,” the notice states.

When the National Council on Disability issued its 2019 report the agency urged both the Department of Health and Human Services’ Office for Civil Rights and the Department of Justice to issue guidance clarifying that the Americans with Disabilities Act and Section 504 of the Rehabilitation Act of 1973 apply to all stages of the organ transplant process. A group of 30 members of Congress also made a similar request in 2016, but to date no guidance has materialized.

CMS said it is looking for input on what changes can be made to ensure that transplant programs provide equal access to people with disabilities, among other issues.

The Biden administration’s move to rethink the organ transplant system comes as some federal lawmakers are pushing for changes as well.

Sens. Marco Rubio, R-Fla., and Maggie Hassan, D-N.H., introduced legislation earlier this month that would ban discrimination against patients in need of organ transplants based on their disability. The bill would also ensure that such discrimination claims could be expedited through federal courts.

Already more than half of states have similar prohibitions on the books, but differences in laws and delays in providing relief have made enforcement difficult, the lawmakers said.

CMS is accepting public comment until Feb. 1.

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