Did you know that people with Down syndrome and other disabilities can face significant barriers to life-saving organ transplants? Shocking, right?
- Some doctors may refuse an organ transplant for individuals with disabilities that need help to follow post-transplant treatment plans (even if they have already secured post-op support).
- Some doctors may believe that individuals without a disability should have higher priority to organ transplant wait lists.
As the parent of a child born with both Down syndrome and a heart defect, Jackie Ward of Shelby Co, Ohio knew from the moment of diagnosis that she’d have to become an advocate for her daughter. “I had no idea that I would have to advocate to show the world that her life was worth living.”
Jackie and her husband, Brandon, brought 3-year-old Ellie to the Statehouse in 2017 to share their experience of inquiring about a heart transplant and to urge passage of a bill that aims to make sure people cannot be kept off organ-transplant waiting lists in Ohio solely because of their disability.
Ohio House Bill 332 was born, and then-Ohio Governor John Kasich signed the bill into law in June of 2018.
Unfortunately, people are still being barred from organ transplants based on disabilities. You can start with your state representative. Tell them 7 other states have passed legislation UNANIMOUSLY. It’s a great bipartisan bill that makes sense. If they’re hesitant, reach out to your state’s Disability Rights Organization and see if they can help you lobby a legislator to introduce the bill. You can use the Ohio bill as a model bill for your state, and they can just tweak it for your state.
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