New Bill Aims to Prevent Discrimination Against Organ Transplantation for People with Disabilities
January 24, 2020 (Georgia) – Gracie’s Law, a new bill to prevent any organ transplant discrimination against people with disabilities in Georgia, will be introduced to the Georgia General Assembly in January 2020 by Representative Rick Williams (R – District 145). The bill sits on the heels of the Americans with Disabilities Act (ADA), the 1990 legislation that denies discrimination based on any disability, but there is still a lack of federal enforcement.
Parent advocates David and Erin Nobles championed this bill when research led to finding out that people with disabilities do not receive equal consideration for organ transplants.
“I was blown away,” said David. “I didn’t want to talk or even think about it. It’s something we could easily have been faced with.”
Twenty-four weeks into pregnancy, doctors revealed to Erin and David that their daughter, Gracie Joy, had an atrioventricular (AV) canal defect – a large hole in the center of her heart. Four weeks before this discovery, they were also notified that their daughter has Down syndrome. Approximately 45% of children born with Down syndrome have some form of a congenital heart defect.
Eventually Gracie Joy had a successful surgery and was able to go home with her family. But, if in the future Gracie Joy needs an organ transplant, her family would have to fight to get her on the list. The Nobles then realized this was an opportunity to do something for their daughter all for all people with disabilities in Georgia.
“For far too long, people with disabilities have been denied organ transplants based on misconceptions about their quality of life […] This legislation seeks to change that stigma and ultimately save lives,” said Rep. Williams.
Currently there are only 12 states with laws in place to stop organ transplant discrimination. It is important to have a state law so that if there is an issue, it can be fought at the state level.
Learn more about Gracie’s Law and the Nobles family in the Georgia Council on Developmental Disabilities (GCDD’s) Making a Difference Winter 2020 magazine.
GCDD will be advocating for Gracie’s Law alongside the Nobles family during its 2020 Advocacy Days. The public is invited to join GCDD on Wednesday, January 29 at 8:30 AM at the Central Presbyterian Church in downtown Atlanta, across from the Capitol, for Gracie's Law Advocacy Day. Find more information or register for Advocacy Days.
About the Georgia Council on Developmental Disabilities:
The mission of GCDD is to advance social change, public policy, and innovative practices that increase opportunities for individuals with developmental disabilities and their families to thrive where they live, learn, work, play and worship in Georgia’s communities. www.gcdd.org