People with disabilities are already protected from discrimination under federal law. But advocates say those protections have not stopped some patients from being denied access to organ transplants because of a disability.

In New York, lawmakers have spent nearly a decade trying to add more specific protections to state law.

Despite bipartisan support, they still have not succeeded.

State legislative records show versions of the Organ Donation Fairness Act dating back to the 2017-2018 legislative session. The proposal would prohibit healthcare providers from denying a qualified person an organ transplant, referral or place on a transplant waiting list solely because of a mental or physical disability.

The legislation would still allow doctors to consider a disability when an individualized medical evaluation determines it is medically significant to the transplant.

Sean Feeley, chief advocacy and policy officer for the National Down Syndrome Society, said existing federal protections have not eliminated discrimination in the transplant process.

“Where we see the discrimination occurring is with those categorical or the blanket exclusions of people with Down syndrome, people with other disabilities,” Feeley said.

Feeley said discrimination can occur at several stages, including when a patient seeks a referral, an evaluation at a transplant center or placement on a waiting list.

Federal laws, including the Americans with Disabilities Act and Section 504 of the Rehabilitation Act, already prohibit disability discrimination. But Feeley said advocates continue pushing for transplant-specific laws because questions remain about enforcement and how existing protections apply throughout the transplant process.

A different strategy in Albany

Assemblyman Joe Sempolinski, a Republican, introduced his own version of the Organ Donation Fairness Act in 2025.

This year, he took a different approach.

Sempolinski gave up his position as lead sponsor and asked Democratic Assemblyman Angelo Santabarbara, chair of the Assembly Committee on People with Disabilities, to carry the legislation.

“I’m a Republican. He’s a Democrat, but we’re both special needs dads,” Sempolinski said. “I don’t care whose name is on it. I don’t care how it passes. I just want it to pass.”

For Sempolinski, the issue is also personal.

“I have a daughter with Down syndrome who has a heart condition,” he said. “And so, this is something that when it affects people you know, that shines a different light on it.”

Santabarbara introduced the current Assembly version, A10734, on March 27. It remains in the Assembly Mental Health Committee.

The Senate version, S2206, is sponsored by Republican Senate Minority Leader Rob Ortt and also remains in committee.

Sempolinski could not point to a single policy disagreement responsible for the legislation’s failure to advance.

“When there’s something we all agree on, can’t we just, can we just get it done?” Sempolinski said. “It is something I think everybody left, right and center does find frustrating.”

Federal legislation moves further

While New York’s legislation remains in committee, a similar proposal has moved further in Washington.

The Charlotte Woodward Organ Transplant Discrimination Prevention Act passed the U.S. House. In June, a Senate committee unanimously advanced its version of the legislation. It now awaits action by the full Senate.

The federal legislation similarly seeks to prohibit discrimination against people with disabilities throughout the organ transplant process.

“We’ve seen strong bipartisan support, and I would love to see that in New York as well,” Feeley said.

Sempolinski said he hopes Congress ultimately passes federal protections, which he believes could make further action in Albany unnecessary. If Congress does not act, he said he plans to continue pushing for state legislation if reelected.

The National Down Syndrome Society takes a somewhat different view.

Feeley said the organization considers federal and state protections complementary rather than competing approaches, with both aimed at strengthening enforcement and giving people with disabilities recourse when discrimination occurs.

For families facing a transplant decision, Feeley said the distinction matters because the decisions can be life or death and often must be made quickly.

“This is really about making sure that people with disabilities are getting treated the same as everyone else when they need care,” Feeley said. “Access matters and the speed of access matters.”