PHILADELPHIA Inspired by the case of a young man with autism who was denied a place on a heart-transplant waiting list, a Philadelphia legislator will soon begin gathering support for a state bill that would prohibit discrimination against people with disabilities who want organ transplants.
Rep. John Sabatina (D., Phila.) plans to introduce "Paul's Law" in honor of Paul Corby of Pottsville, whose mother, Karen, said doctors at the Hospital of the University of Pennsylvania refused to put him on the heart-transplant list because of his autism. Her petition on change.org protesting the decision has drawn more than 289,000 signatures.
The bill would let programs deny transplants to people with disabilities only if the disabilities are "medically significant" to the procedure. People with disabilities could not be denied because they cannot comply with complex post-transplant medical regimens as long as they have an adequate support system.
"It's the moral and correct thing to do," said Sabatina, whose step mother's sister had an intellectual disability. He hopes for passage in 2014.
California has a similar law, and New Jersey passed one over the summer after Amelia Rivera, who has an intellectual disability, was turned away by Children's Hospital of Philadelphia's transplant program. The hospital later apologized and Rivera, 5, received one of her mother's kidneys in July.
"She's doing great," her mother, Chrissy Rivera, said. "She has more energy. She's more vocal."
Amelia Rivera has Wolf-Hirschhorn syndrome, a genetic condition that shortens life and causes developmental delays. She does not talk or walk but can communicate with her family, Chrissy Rivera said.
In 2012, the family said a Children's Hospital doctor told them Amelia would not qualify for a transplant because she was "mentally retarded."
"My child's life is just as important as somebody else's," Chrissy Rivera said. She is "proud that [Amelia's] story inspired a law that would prevent this from happening to another family."
Karen Corby said her son, 24, was so upset about HUP's rejection that he has not wanted to get on the transplant list at another hospital. His condition is stable. He tires easily and has to sleep propped up on pillows so he can breathe. She said the Mayo Clinic estimated a year ago he would live about nine years.
Of Sabatina's bill, she said: "We are very excited but refuse to get our hopes up. We have been let down so many times by so many other organizations saying they would help."
In summer 2012, Karen Corby said, a Penn cardiologist told her Paul was not a good transplant candidate due to his "psychiatric issues, autism, the complexity of the process, multiple procedures, and the unknown and unpredictable effect of steroids on behavior."
Both hospitals declined to comment.
The Americans With Disabilities Act already protects people with disabilities from discrimination, an HHS official confirmed, but advocates said it had not been well-enforced.
Ari Ne'eman, president and cofounder of the Autistic Self Advocacy Network, worked with Sabatina on his bill and is talking with other states. "This is definitely an area that's attracting a growing amount of national attention," he said. Ne'eman, who is autistic, believes discrimination is widespread in transplants, and unjustified. "There is absolutely no scientific basis for treating people with developmental disabilities differently in accessing organ transplantation," he said.
The Arc of New Jersey, which advocates for people with intellectual disabilities, backed the New Jersey bill, which passed with wide support, executive director Thomas Baffuto said. He called the law an "appropriate response to an outrageous situation."
Sabatina plans to post a petition about his bill at www.pahouse.com/Sabatina/