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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