Why are People with Disabilities Being Denied Organ Transplants?

A monitor, like one found in a hospital room.A story in the Washington Post last weekend about a 27-year-old with autism who was denied a heart transplant caught my attention. The story says that according to the denial letter sent to his mother, Paul Corby was rejected because of his “psychiatric issues, autism, the complexity of the process…and the unknown and unpredictable effect of steroids on behavior.”

Isn’t that illegal? Not according to that story: “In fact, mentally disabled people are turned down for organ transplants often enough that their rights are a rapidly emerging ethical issue in this corner of medicine, where transplant teams have nearly full autonomy to make life-or-death decisions about who will receive scarce donor organs and who will be denied.”

I was diagnosed with juvenile diabetes when I was a kid. That’s what caused my blindness. Over the years, friends have asked if I might consider a pancreas transplant.

It’s true a pancreas transplant might offer a “cure” for type 1 diabetes, but physicians can be reluctant to transplant a pancreas alone for diabetes without renal failure. The reason? Side effects of the immunosuppressant drugs required after transplantation are more detrimental than the complications of diabetes.

When someone with type 1 diabetes is experiencing renal failure, doctors reason they may as well combine a pancreas transplant with the kidney transplant. That way you end up with a healthy pancreas that won’t damage the kidney anymore.

My kidney is doing fine now, thank goodness, but if the time does come where I need both a kidney and pancreas transplant, could blindness be a reason to deny me? According to the Washington Post article, it could. The story says some teams weigh mental and psychological issues heavily in deciding whether someone should be eligible for a donor organ, and others do not. “A few even admit that they automatically rule out people with certain disabilities.” More from the article:

“As a society, we want individual transplant centers to maintain discretion about putting people on their list or not. We don’t want government playing doctor at the bedside,” said Scott Halpern, an ethicist at the University of Pennsylvania medical center that rejected Corby. “Having said that, the current system lacks the accountability that we might wish it to have. There are virtually no checks and balances on the decisions that transplant centers make.”

So there you have it. I am hopeful my kidneys stay healthy and I never need a dual transplant, but if I do, I hate to think blindness might prevent it from happening.

Signing up to be an organ donor is much easier than you might think. A web site called Donate Life America provides a list of where to register in your state, and United Network for Organ Sharing (UNOS) provides an easy-to-read fact sheet dispelling common myths about organ donation.

One thing I learned from that list: a history of medical illness does not prevent you from donating organs, and neither does old age. With recent advances in transplantation, many more people than ever before can be donors.


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  1. Elizabeth Ariana Burch Says:

    Where do you get off calling disabled people retards?

    I have mild Asperger’s syndrome. Despite this, I have graduated cum laude (with honors) from college, am currently an intern, and have wonderful job prospects. I don’t need an organ at present, but I would hate to think that I might be denied based on my mild Asperger’s syndrome. I’m just as capable of living alone and earning my own living as are neurotypical (“normal”) people- provided that I have all my organs. As a matter of fact, I’m smarter than most people and my Asperger’s syndrome has given me different skills than most. I have more focus and determination and a greater ability to remember things than than do most people, but this diagnosis means that, thanks to attitudes like yours, people treat me differently and judge my worth based off of those two words.

    I might point out that perhaps we’re better off as a society without judgemental pricks like you. Perhaps you shouldn’t get an organ transplant.

  2. Niels W. Pemberton Says:

    No NO No retard has any right to have an organ transplant.

  3. Koichi Ito Says:

    Recently I had near death expedience so it was painless. In fact getting a heart transplant is more painful for me. In fact I still want to survive and stay alive.