ATLANTA — Every second counts when a sick child needs an organ transplant. But parents of people with disabilities may need years to get their children on the list.
People with disabilities can be organ donors. They can give all of their organs, there's no law against it. But if someone with a disability needs an organ transplant, that fact alone can get them removed from the list.
While federal law prohibits discrimination based on disability, the National Council on Disability found medical professionals aren’t aware that applies to organ donor lists, and some transplant centers even have policies that bar or caution against placing someone with psychiatric, intellectual, or developmental disabilities on the waiting list.
There is no law on the books in Georgia that protects patients with disabilities from being removed from the organ donor waiting list because of their disability, and 11Alive's Kaitlyn Ross spoke to a local family is fighting to change that.
Erin Nobles got the diagnosis early in her pregnancy that her unborn daughter would have Down Syndrome, but she said in every way, Gracie has been a gift. She still thinks it's strange when people apologize after they find out Gracie has Down Syndrome.
"If someone tells me they're sorry, I would say, 'sorry for what'," she said.
"(Gracie) brings me so much joy. And every bit of her that we have had to fight for she has given back to us in love and in joy and unconditional acceptance," she added.
It was only after Gracie was diagnosed with a heart defect that they started to worry. When Nobles researched what could happen to her daughter, she was alarmed.
"If my daughter had needed a heart transplant during that time, there was a possibility she could have been denied because of her disability," Nobles said.
Right now, across the country, nearly 2,000 children are on the national transplant waiting list. Nobles said she found countless stories online of people who needed organ transplants being removed from the list - simply because they're disabled. Worse, she said many families never know why.
"Unless they go back and request the paperwork to see why the child was denied, most people don't know the discrimination happened," Nobles said.
A family in North Carolina recently accused a hospital of denying their loved one a heart transplant because of an intellectual disability. They took the fight to federal court and won. That person is now back on the transplant list.
But Erin doesn't think they should have had to go to court to get them there.
"Most families, they don't have two and three years to fight that battle," she said.
The Federal Americans with Disabilities Act protects people from discrimination, but that means families have to fight in federal court.
That's why Nobles worked with her local lawmaker to propose Gracie's Law this legislative session in Georgia. It would allow families to challenge the removal from an organ transplant list in local court, and get priority on the docket.
It's protection only 12 states in the country have right now, and self advocate for people with Down Syndrome, Martha Haythorn, thinks it's time that changed.
"All we want in the world is for our kids, and for our adults, to have that chance," Haythorn said. "To show everyone who we are and that we matter."
She's fighting in the legislature alongside the Nobles this year to get Gracie's Law passed.
"Please fix this," she implored. "It's time that we get out there as advocates, and self advocates, get out there, save the world. It's time."
So far, everyone they have talked to has been supportive of the legislation, but they'll be at the state capital this year to prove why it's so important.
"They're worth fighting for," she said.
They'll be at the State House Jan. 29 to lobby for Gracie's Law. They're hoping it gets bipartisan support.
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