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Independent Living News & Policy from the National Council on Independent Living

Submit Your Story of Transplant Discrimination for the Upcoming Documentary “Scarcity: Lives Worth Saving”

Scarcity: Lives Worth Saving is a documentary in production at the University of Utah that confronts organ scarcity in the US and the ethical dilemmas that result, namely discrimination against [people with disabilities] as transplant recipients.

The producers of this film are seeking people to tell their story of discrimination in organ transplantation based on disability. If you have a story to tell, please contact Spencer Merrick, Merrick Films / University of Utah, at (801) 783-7774 or

With Scarcity: Lives Worth Saving, our production team has done extensive research on the subject of discrimination in organ donation. We feel that this is an issue worth investment of our time and money. Our hope is that we can promote awareness, advocacy, and even legislation as we share the stories of some of the victims of discrimination and shed light on paths to equality. No person should ever have to be asked “why” we should save their life, only “how.”

Read more (PDF).


  1. My mom never had a chance.

    The moment she was labeled as having hepatitis C was the beginning to the end. It’s a long story, but she went through the motions and followed through with the process to get a liver transplant in two different counties. She went to all the doctors appointments, she did all the test, took the required medication to health somewhat steady and even went through the psychological evaluation required for a transplant. My mom was at one point notified that she was “healthy” enough to be added to the transplant list. However, we were never notified of a timeline, availability or likelihood of a transplant actually happening. In fact, when my mom’s health declined due to the continuing stages of liver failure she was told that she was no longer eligible for a transplant. The story goes on and on and unfortunately did not end well. My mom passed away in 2009. At that point she not only have liver disease, but also end-stage renal disease. Her doctors originally gave her a year to live, but as expected by her family and friends she fought for her life and was with us for 4 1/2 years after her original diagnosis.

    The stereotypes that my mom encountered because of her hep C diagnosis were appalling! There are many ways people can contract hepatitis C, but my mom went through and experienced as a result of that diagnosis was horrendous and should not happen to anyone. Nearly ever ER visit included some sort of verbal or medical abuse. Bedside manors did not exist. My mom was treated like an object rather than the human being.

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