September 28, 2021
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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 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
- Congress.gov – H.R.1235 was introduced in the House in February 2021. This Federal bill would prohibit the denying access to transplants based on disability.
- National Down Syndrome Society – This page has a list of states that currently have laws prohibiting this discrimination. The Charlotte Woodward Organ Transplant Discrimination Prevention Act is named for a member of their staff.
- Autistic Self Advocacy Network – Organ transplants for people with disabilities: A guide for advocates.
- National Council on Disability – This independent federal agency published their Organ Transplant Discrimination Against People with Disabilities report in 2019.
- Center for Dignity in Healthcare for People with Disabilities – A comprehensive listing of every U.S. state’s current transplant protection laws.
The History of Organ Transplant Discrimination
- Slate – How the IQ test became a way to discriminate against those who may need a little more help with post-op care.
- Los Angeles Times – The story of Sandra Jensen, whose transplant denial and subsequent battle for reconsideration made national news. In 1996, she became the first person with Down syndrome to undergo a heart-lung transplant.
- California.gov – California was the first state to outlaw transplant discrimination, after Sandra Jensen’s story made news.
- American Journal of Transplantation – The Veneto Region of Italy’s 2009 decision to discriminate based solely on IQ does not use a reliable measure for medical decisions.
- Developmental Disabilities Coalition – 85% of transplant centers consider intellectual or developmental disability as a factor at least some of the time.
Surveys and Studies on Transplantation
- ScienceDirect – A 1993 survey by researchers at Virginia Commonwealth University found that, of the 411 transplant centers surveyed, one-fourth indicated that patients with IQs between 50 and 70 would be considered ineligible to receive a heart transplant.
- American Journal of Transplantation – This 2019 study shows a lack of evidence to prove that patients with intellectual disabilities should be disqualified for transplantation.
- The Journal of Pediatrics – The findings of this study support policies that include children with intellectual disability as transplant candidates.
- Pediatr Transplant – “We have demonstrated that for children with intellectual disability […], early outcomes are comparable to those of other children without intellectual disability.”
- Hepatology – For children with intellectual disability, “there was no difference in early graft or patient survival compared with other transplant recipients.”
- Pediatric Transplantation – This article from 2018 argues that intellectual ability should not be considered when deciding transplant eligibility.
Why Organ Donation is Important and How to Become a Donor
- Mayo Clinic – Common organ donation myths are debunked in this article.
- Public Health Reports – Former U.S. Surgeon General Kenneth Moritsugu gives a personal account on the effect of organ donation.
- University of Michigan Health Blog – Seven facts everyone should know about becoming an organ donor.
- National Donate Life Registry – Register here to become an organ, eye and tissue donor in the United States.
- Government of Canada – This link provides information and resources on becoming an organ donor in Canada.