CHICAGO — When it comes to getting an organ transplant, people with intellectual disabilities continue to face barriers. Misconceptions about their ability to comply with post-op requirements sometimes mean doctors and transplant centers have refused to put them on waiting lists.
Charlie Robertson is a sweet, curious 5-year-old girl, who loves to pick flowers for her family. But Charlie, who has Down syndrome was born with a hole in her heart that didn’t close on its own.
“It was kind of always in the back of my mind that if she needed surgery, something went wrong, she needed a heart transplant, she may be denied,” said Charlie’s mother, Lindsay.
Physicians and hospital transplant teams make the determination as to who is a good candidate to be added to the national waiting list. But denying organ transplants to people with intellectual disabilities like Down syndrome or autism still happens even though it’s illegal.
One study reported that 85% of pediatric transplant centers consider intellectual or developmental disability as a factor in their determination of transplant eligibility, and 44% of organ transplant centers wouldn’t add a child with a neurodevelopmental disability to the list.
“There is still discrimination faced by people with disabilities for organ transplants,” said Ashley Helsing, director of government relations with the National Down Syndrome Society.
Helsing says families can file a complaint with the Health and Human Services Office for Civil Rights, but that takes time.
“And when a person is at the point where they need a transplant, time is absolutely of the essence,” said Helsing.
Earlier this year, Congress introduced federal legislation to expand protections in the Americans with Disabilities Act. It would prohibit organ transplant discrimination based on a person’s disability or their perceived inability to comply with postoperative care.
“Not many people with Down syndrome and those with IDD get the opportunity to have a life-saving organ transplant,” said Charlotte Woodward.
The proposed federal legislation is named for Woodward, a disability civil rights activist with Down syndrome who received a life-saving heart transplant nearly nine years ago.
“If my doctors hadn’t advocated for me to be a heart transplant recipient, I wouldn't be here,” said Woodward.
In the meantime, states are being lobbied to step in.
Texas recently joined 19 other states, like California, Ohio and Florida, that have passed laws ending disability-based discrimination on the organ transplant list. Another nine states, including Colorado, New York and Tennessee, have introduced similar legislation.
Lindsay Robertson worked to get a state bill passed in Illinois and on to the governor’s desk.
“As a mom, I feel like it's just one more thing that we have to fight for so that people know that it doesn't matter if they have a disability,” she said. “She's worth it. If she needs a transplant, she should be able to get one regardless of her diagnosis.