One step closer: Representative Wood champions organ transplant bill

Published 8:00 am Wednesday, June 7, 2023

On May 25, Exton’s Law, which protects organ transplant recipients who are disabled, was passed through the Senate.

House Bill 263 ensures that individuals with disabilities are protected against discrimination in the medical review process for organ transplants. Four years after its initial introduction, the bill is heading to Gov. Kay Ivey’s desk to be signed into law.

“Every individual should have that right,” said Alabama House Representative Debbie Wood, who carried the bill in the House. 

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Wood first began working on the bill in 2019. The bill is named after six-year-old Beulah resident Exton Black, who was born with Down Syndrome. 

Wood first heard Exton’s story in 2019. Savannah Black, Exton’s mother, learned about a similar bill that was being passed in another state. A friend of hers who also had a child with a disability advised her to look into it for Alabama. 

Black’s first son, Exton, was born with Down Syndrome, has a trach and is ventilator-dependent. Since he was born, the family has embraced his disabilities as a part of him. At four years old, his brother, Grayson, already knows about trach care. 

“He is so in tune with his brother … We celebrate disability in this house. We celebrate all abilities,” Black said. 

Black learned that there was no legislation protecting individuals with disabilities from discrimination in the selection process for organ transplants. According to Black’s research, individuals with disabilities have been denied organ transplants due to unfounded assumptions. 

“A lot of the transplant companies just decided that these kids couldn’t complete the post-op,” Black said.

Her own son’s ongoing medical needs meant that he may need an organ transplant one day. As a mother, Black felt it was her duty to help draft the bill for the families like hers across the state. 

“All disabilities matter, and all kids and adults should have the right … From one mama to another, I just thought we’ve gotta make this happen,” Black said.

Black said that the goal of the bill was to eliminate the gray area in the process and provide legislation that protects individuals with disabilities from discrimination. 

“We wanted to level the playing field,” Wood said. 

Wood and Black worked with the pulmonology unit of UAB to fine-tune the bill. After four years, they finally saw their work pay off.

The bill passed through the House and the Senate with an amendment. The Americans with Disabilities Act of 1990 allows citizens to take criminal action for discrimination. Exton’s law would allow individuals to take civil action against the state, rather than criminal. 

“Finally, we’re here,” Wood said. 

Black praised Wood for her support throughout the long process of turning the bill into law.

“We are so grateful for the amount of support that we have seen from the Valley community, but also with Rep. Debbie Wood,” Black said. “She went to bat for us. She’s been a warrior about all of this and done it with a smile on her face.”

The bill has passed through the Senate and been concurred by Wood. It’s now on its way to be signed by Ivey.

“I’m proud that Alabama has finally accepted it, and I’m proud that Alabama is going to be a little better for it,” Black said. 

Down Syndrome of Alabama and Autism Moms are some of the organizations that supported the family throughout the bill.