Disabled are human, deserve transplants

From the September-October 2012 issue of News & Letters:

Disabled are human, deserve transplants

A 23-year-old man was denied a heart transplant by the University of Pennsylvania Hospital because of his autism, says his mom, Karen Corby. Paul Corby has autism and a mood disorder. He has a good quality of life and a social network to support him after the surgery. Paul was diagnosed with a deadly heart condition that requires a transplant, but was kept off the transplant list.

The phone call from Paul’s cardiologist denying him placement left Karen numb. “Before she hung up, the doctor told me to have a nice day.” Karen says. That doctor wrote her, “I have recommended against transplant given his psychiatric issues, autism, the complexity of the process, multiple procedures and the unknown and unpredictable effect of steroids on behavior.” “I was devastated,” said Karen, “I don’t see why anyone would think his life is less worthy of saving.”

Paul takes 20 drugs a day without problems and his medications have not caused behavior problems. She started an online petition on change.org to convince the hospital to change its mind.

This case is similar to one in Philadelphia concerning three-year-old Amelia Rivera, who was born with a genetic condition that is characterized by a distinct facial appearance, delayed growth and development, intellectual disabilities and seizures. Her mom, Chrissy, says the Children’s Hospital of Philadelphia won’t let Amelia get a life-saving kidney transplant because she is “mentally retarded.”

When Rivera told the medical team who denied the transplant that a family member would donate the kidney, the doctor said Amelia would still not be eligible because of her mental delays and quality of life. They said transplant drugs would interfere with Amelia’s anti-seizure medication and that she might need another transplant later in life. “So you’re saying in six months to a year when her kidneys fail you want us to let her die?” Chrissy asked, and he said, “Yes.” Outraged, Rivera also started a petition on change.org that has more than 21,000 signatures.

These two horrible examples bring up the question: what does it mean to be human, and who is deciding? The doctors and hospitals in both these cases are deciding these two people are defective human beings and don’t deserve having scarce organs “wasted” on them.

Pam Wood, the mother of two children with disabilities, one of whom had a liver transplant but later died, doesn’t completely disagree with the hospitals’ decisions. “Yes, I had to bring Quantell’s school records in and show them to the hospital to prove that he could progress mentally and that pissed me off. But I understand the reasons.” She continued, “Transplants are hell to go through, as is the rigid and complicated regime of medications afterwards. What if Paul Corby refuses to take his medication? Just missing one can cause problems. Transplant teams are looking for adults that can take care of themselves. There are too many possibilities for mistakes. The hospitals are making these decisions because there are not enough organs to go around. They want to give the organs to the person who would have the best outcome….

“In an ideal world, whether or not someone has a disability should not make a difference in anything, including transplants. But we are not in that world.”

We have to start treating all people, including those with disabilities, as the complete human beings they are.

—Suzanne Rose

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