Disability Futures

Paul Corby needs a new heart. On that there is no dispute. The same rare disease that killed his father at 27 is destroying his left ventricle. While there is no cure or surgery that might repair the damage, a heart transplant could extend his life considerably.

But Corby, who lives in Pottsville, Pa., is autistic, suffers from several psychological conditions and takes 19 medications. When he applied to the transplant program at the University of Pennsylvania in 2011, he was rejected because of his “psychiatric issues, autism, the complexity of the process . . . and the unknown and unpredictable effect of steroids on behavior,” according to the denial letter sent to his mother.

“I couldn’t even believe this would happen,” Karen Corby said, “that this would be the reason in this day and age.”

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.