By Emerson Wigand
Capital News Service

LANSING – Without laws to prevent it, Michiganders with disabilities are not guaranteed equal consideration for needed organ transplants, advocates say.

This discrimination has been an issue for those with developmental disabilities nationwide, said Nicole Patton, the manager of state government relations at the National Down Syndrome Society. Notable cases have occured in New York, Maryland and Texas.

“One example was James Wellman, of California,” Patton said. “He was denied a kidney transplant because of a dual diagnosis of Down syndrome and autism.”

Of the 29 states that have passed laws prohibiting organ transplant discrimination, 13 acted in 2021 alone, Patton said.

Michigan could join them. Similar legislation has been proposed by Rep. Bronna Kahle, R-Adrian, and Sen. Curtis Hertel, D-East Lansing. Without a state history of cases, Michigan’s proposed legislation is preventative.

“We haven’t heard any explicit stories from Michigan,” Patton said. “But that doesn’t mean that they haven’t happened.”

Cyndie Peters, an advocate for the special needs community in Grand Rapids, was shocked to discover this issue existed. The former nurse has a daughter who has Down syndrome. She  is supporting these bills to add new protections.

 

The bills would restrict those involved in organ transplants from basing decisions on an individual’s disabilities. This includes denying transplants or giving lower priority on a waiting list to those with disabilities.

Peters said without these laws one can’t ensure equal consideration for people like her daughter.

“It’s not specific to Down syndrome,” Peters said. “It could be anyone with a cognitive disability.”

A lot of this discrimination happens at the referral stage, as some doctors consider disabilities in transplant recommendations, Patton said. Some doctors make assumptions regarding the quality of life for those with conditions like Down syndrome, as well as their potential to recover from transplants.

Seeking justice for organ transplant discrimination can be difficult, Peters said. Legal red tape and court processes can waste vital time.

“Suddenly it’s a year down the road,” Peters said. “But your child needed an organ transplant six months ago.”

That’s why enforcement is the biggest part of this legislation, Patton said.

Hertel agrees that there needs to be consequences for this type of violation. His bill would allow those alleging discrimination based on disability to have their time-sensitive court case prioritized.

In addition to Hertel’s bill, a bill sponsored by Kahle was passed by the House. Both are  in the Senate Health Policy and Human Services Committee.

Hertel said he hopes to see a hearing soon, and he expects to see bipartisan support.

“We should be able to agree that all lives have value,” Hertel said. “People shouldn’t be discriminated against based on physical or mental disability.”