Did you know that people with Down syndrome and other disabilities face significant barriers to life-saving organ transplants? I was shocked when I first heard that this was a “thing.” How could anyone decide one life is less worthy than another solely based on their disability?
That’s why a little over a year ago I called my state representative, Niraj Antani, and asked him to draft a bill giving greater legal protections for life-saving organ transplants to people with disabilities. Ohio House Bill 332 was born, and today Ohio Governor John Kasich signed the bill into law. You can read the bill here.
As the bill was being drafted a year ago, I learned about a story of organ transplant discrimination just north of where I live in Sidney, Ohio. Little Ellie’s mom, Jackie, was told shortly after she was born that Ellie couldn’t receive the heart transplant she desperately needed to stay alive because she has Down syndrome. Read her story below.
Read Related Post Here: Little Ellie is Denied the Heart She Needs
As soon as I connected with Ellie’s mom Jackie Ward, I knew she had to share Ellie’s story with Ohio legislators and the world. Ellie would be the change-maker! Jackie was hesitant to share at first, but over time she realized the impact Ellie’s story could have on the passage of H.B. 332. Ellie’s story had an huge impact on the Ohio House members I spoke to, who were all equally as shocked as I was that this was indeed a “thing.”
Read Related Post Here: Ending Organ Transplantation Discrimination
The Americans with Disabilities Act actually provides broad protections for individuals with disabilities, but there’s no specific protection for access to organ transplantation. In fact, a group of 30 Republican and Democratic U.S. Representatives signed a letter just last year to the Department of Health and Human Services asking them to issue federal guidance to protect individuals with disabilities against organ transplantation discrimination. Unfortunately, nothing came of that letter. That’s why states need to act.
If you’re interested in advocating for a similar bill in your state I would start with the related posts above, as well as the following toolkits: ASAN Organ Transplantation Toolkit and NDSS Organ Transplantation Toolkit
I would also encourage you to watch testimony from Ellie’s mom below, as well as an Oregon mom who’s non-verbal Autistic son was refused a heart transplant in Oregon and ended up leaving the state and getting the transplant done in California. Both are extremely moving and puts a human face on an otherwise dry bill. Watch the Oregon mom starting at 38 minutes and 51 seconds here.
Ohioans aren’t alone in their fight against organ transplant discrimination. Seven states (Pennsylvania, Oregon, Maryland, California, New Jersey, Massachusetts, and Kansas) have already passed similar bipartisan legislation to prevent organ transplant waitlist discrimination. One more (Delaware) currently has a bill working its way through the state legislature.
In most states, there are no checks and balances on the decisions transplant centers make.
Without regulations, personal bias and preconceptions can play a role in life-or-death decisions. Often doctors cite two reasons for discrimination based solely on disability:
- 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.
- Luckily, we have faced no push back from the health care community for our bill here in Ohio.
Do you believe everyone, regardless of disability, deserves access to life-saving organs? Are you interested in advocating to end organ transplant discrimination in your own state? Comment below and I’ll be sure to get in touch with you.
How do I find out if my state discriminated against people with Down Syndrome for organ transplants? This is abhorrent !
The story above lists all the states that currently have laws protecting against this type of discrimination. Currently there’s only 6 states listed above.
Who do I contact?
I would start with your state representative. Send them this blog post. 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 our bill as a model bill for your state, and they can just tweak it for your state.