GT IndependenceResources and ToolsResourcesDisability Garrison – Episode 02: Discrimination in Transplants with Crystal Gallagher

Disability Garrison – Episode 02: Discrimination in Transplants with Crystal Gallagher

September 28, 2021

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The Problem

In 21 states, it is legal for a person to be denied an organ transplant if they have an intellectual disability. The belief that people who may need more post-operative care should not be eligible for transplants lacks scientific backing.

Join Holly and Michael as they talk with Crystal Gallagher, mother of a child who faced this discrimination. We’ll discuss how this is still happening today. And we’ll give you ways to help in the fight to ban discriminatory transplant practices.

What We Can Do About It

It’s easy to get paralyzed by the feeling that we can’t make a difference. But helping out can be a lot simpler than we think.

Step 1: Become an organ donor (2 minutes)

Organs are in limited supply. Registering to become an organ donor is free and only takes a few minutes. Fill out the form on the National Donate Life Registry. Or, visit the local Secretary of State office to enroll in the database for your state.

Be sure to tell your loved ones that you wish to have your organs donated. This will help avoid confusion or delays in the process. And, it will help ensure your wishes are honored.

Step 2: Contact your representative and encourage them to support H.R.1235 (5 minutes)

Here are four essential tips for calling a member of Congress:

  • Write out what you are going to say and have it in front of you when you call
  • Identify yourself and ask for a legislative assistant
  • State the reason for your call – keep it short and support it with facts
  • Be courteous and thank the staffer for taking your call about this issue

Talking points and facts to use for your phone call:

  • H.R.1235 prevents hospitals from discriminating based on IQ when performing organ transplants
  • 29 states have passed laws making this discrimination illegal, but 21 have not
  • Federal law is needed to stop IQ-based organ transplant discrimination
  • Here is a short fact sheet to use as a guide

Step 3: Support National Down Syndrome Society (3 minutes)

Supporting National Down Syndrome Society (NDSS) is a great way to help end discrimination in organ transplants. The core values of Service, Integrity, Collaboration and Belonging are the heart of their work. NDSS is leading the push to make transplants available to all who need them.

Boom. You’ve made a difference in ten minutes or less.

Lucy’s Story

Lucy was born with a condition called PMM2-CDG. It’s a rare disorder that less than 900 diagnoses worldwide. It affects many different organs and systems in the body. But one major issue that can occur because of this condition is cirrhosis of the liver, which Lucy had.

When Lucy’s mother, Crystal, tried to get her on the transplant list, they were denied because of Lucy having PMM2-CDG. Instead of getting the care she needed, Lucy was sent home on palliative care. She would have died without a transplant, but this story has a happier ending.

Get More Information on Discrimination in Transplant Waiting Lists

Current Advocacy and Legislative Efforts

The History of Organ Transplant Discrimination

Surveys and Studies on Transplantation

Why Organ Donation is Important and How to Become a Donor

Learn More About Disability Garrison Podcast