Lucy, a Minnesota native, was born with a condition called PMM2-CDG. It’s a rare disorder that has less than 900 diagnoses worldwide. When Lucy’s mother, Crystal, tried to get her on the transplant list, they were denied because of Lucy’s disability. Instead, Lucy was sent home on palliative care, where she would have died without a transplant. But thankfully, this story has a happier ending. (Hear the whole story at gtindependence.com/episode-02.)
While Lucy’s story ended happily, this is often not the case. On October 8, 2021, Zion Sarmiento, an infant with Down Syndrome, died after being denied the heart transplant he needed to survive. This is a gross violation of human rights through eugenics. And it’s only one story out of countless currently happening across the country. To learn more about Zion, follow his family’s group on Facebook, Zion’s Army. Or contact the National Down Syndrome Society.
Holly Carmichael, CEO of GT Independence, has a daughter named Maggie with PMM2-CDG, just like Lucy. Holly says, “This discrimination is not rare. This is happening all across the country. In fact, 85% of pediatric transplant centers consider a child’s intellectual or developmental disability when factoring whether or not they qualify. They’re making this judgment based on this child’s perceived quality of life, what their contribution to society might be. The American Academy of Pediatrics came out with a policy statement, a paper clarifying heavily that this does not impact the success of the transplant or the health of the participant in any way, and it’s downright wrong.”
There is still time to stand up and end this violation of human rights. In fact, it’s possible for each one of us to make an incredible difference—all in less than 10 minutes.
First, legislation must be passed that makes sure that this discrimination doesn’t happen. In the last few years, half the states in the U.S. have passed legislation to prevent this discrimination. But 21 states still allow this violation of human rights. To take action on national legislation, call your representatives in Congress to support H.R. 1235. This is also called the Charlotte Woodward Organ Transplant Discrimination Prevention Act. The act prohibits disability-based discrimination to get an organ transplant.
Second, support the National Down Syndrome Society. They advocate for Down Syndrome throughout communities. They do this by focusing on areas of resource and support policy and advocacy, community, and engagement. They are doing a lot of work to pass this national bill. Visit their website (ndss.org) to offer your support.
Third, educate yourself. In the latest episode of the Disability Garrison Podcast, Holly Carmichael (CEO, GT Independence) and Michael Murray (CRO, GT Independence), discussed this issue alongside Crystal, Lucy’s mother. Listen to the 30-minute episode and hear the full story.
Michael Murray states, “Just like a garrison is a safe place where an army gathers, the Disability Garrison Podcast is a place for the army of disability rights advocates to gather and discuss complex issues. We are unafraid to identify problems in our world and have difficult conversations about them. But we are not just here to complain. We spend our time brainstorming solutions with generals in the disability rights movement. Together, we take action to make positive change and lead the fight for justice and equality.”
Join Holly and Michael on gtindependence.com/episode-02 and listen to Lucy’s story. Then take a look at all the ways you can take action in less than ten minutes. From calling your representative, to supporting the National Down Syndrome Society, to signing up to donate organs, there’s a way for everyone to make an incredible difference.
Visit gtindependence.com/episode-02 or Google “Disability Garrison Podcast” to take steps to end discrimination in transplants. For Lucy and Zion—let’s make change happen.