Equal Lives, Equal Rights: Challenging Organ Transplant Discrimination Against People With Disabilities
Over 100,000 individuals in the United States are waiting for an organ transplant, including many people with intellectual and developmental disabilities (IDD). Thousands of people die each year waiting for a transplant. Unfortunately, many people with IDD get rejected at such high rates that it has become an ethical medical issue.1 For example, a study showed that individuals with IDD were 62% less likely to receive a kidney transplant.2
The National Council on Disability released a report about organ transplant discrimination. The report shared beliefs that some medical professionals had about people with disabilities. Some doctors believe that those with IDD would not be able to comply with postoperative care. Other doctors believe that disability impacts the likelihood of having a successful transplant.3 However, research has shown that these are myths. Many studies show that transplant outcomes for people with disabilities are not worse than those who do not have disabilities.4
Thankfully, some professionals understand that having a disability does not mean a person should be less eligible for an organ transplant. Thanks to organ donations, people like Charlotte Woodward can survive and live fulfilling lives!
Charlotte is an advocate with Down syndrome who was born with a congenital heart defect. She had to undergo multiple surgeries as a child and finally received a heart transplant in 2012. The journey to get her heart transplant had its challenges, but she used her experience to fight to make sure everyone had access to organ transplants. To make this a reality, Charlotte spoke with policymakers about creating a bill about organ transplant discrimination. Members of Congress created the Charlotte Woodward Organ Transplant Discrimination Prevention Act. This bill would prohibit health care entities from denying a person access to a transplant due to their disability.
For decades, The Arc has supported legislation, regulations, and policies that address organ transplant discrimination. Charlotte’s bill’s introduction in Congress was successful. The Arc will continue to advocate that organ transplant discrimination is wrong and needs to end.
Charlotte is also a member of The Arc’s National Council of Self-Advocates. Charlotte offers this advice for other self-advocates who are tirelessly working to advance legislation: “Never give up. If you don’t speak up for yourself and don’t demand what you want and need, you’re not going to get it.”
If you are a self-advocate looking for effective advocacy tips, join our National Council of Self-Advocates.
2 https://jamanetwork.com/journals/jamasurgery/fullarticle/2801511
3 https://www.ncd.gov/assets/uploads/reports/2019/ncd_organ_transplant_508.pdf
