Paul, who lives in Pennsylvania, doesn't drink, doesn't smoke, and is otherwise healthy. And yet Paul's mom, Karen Corby, has been fighting to get her son a heart transplant since 2011.
What's the holdup? Paul's other diagnoses include autism, a mood disorder, and an intellectual disability.
A doctor at Penn Medicine (part of the Hospital of the University of Pennsylvania) told Karen Corby over the phone that Paul was not being put on the transplant list.
"He can't even list all his medications," Karen says the doctor told her.
"I told her, 'I can't even list all his medications. He takes 19 medications. I carry a list.'"
"The doctor was more interested in the fact that he could not name all his medications and the Princess Peach doll he carries for comfort, than the fact that he has never smoked or drank alcohol," Karen wrote in a petition letter. "Where will the discrimination end?"
Karen's petition on Change.org eventually amassed nearly 300,000 signatures, catching the attention of Pennsylvania State Representative John Sabatina (D-Phila.), who has a relative with an intellectual disability.
Rep. Sabatina is now proposing legislation in Pennsylvania that would prevent discrimination against those with physical or intellectual disabilities in obtaining transplants. The proposed bill is similar to legislation that was passed in New Jersey earlier this year in the wake of the story of Amelia Rivera, a young New Jersey girl who was initially denied a kidney transplant by the Children's Hospital of Philadelphia (CHOP) because of an intellectual disability. Amelia has since received a kidney, donated by her mother, and is thriving.
"While there is a set of national standards for transplant candidacy, some institutions consider highly subjective criteria, such as mental, developmental and physical disabilities," said Rep. Sabatina. "Unfortunately, individuals with disabilities have not always received equal treatment when in need of a lifesaving organ transplant. My legislation would end this discriminatory practice."
"Given that Paul and possibly many others have been denied a chance for a life preserving organ transplant by hospitals in Pennsylvania, I fervently believe that the legislature should take a stand against discriminatory practices involving organ transplants," Sabatina said. "I urge my fellow legislators to join me in co-sponsoring this important, life-saving legislation."
Paul Corby, who fully understands the gravity of his situation, expressed his support for the law in an email to me.
"I'm very glad that the law has been announced," he said. "I hope it will help everyone."
Karen Corby also expressed her gratitude toward Rep. Sabatina.
"I am eternally grateful to Representative Sabatina for contacting me and making this happen," she said. "I hope this law helps all individuals with disabilities receive the treatment they need and deserve."
At the same time, both Paul and Karen are trying not to get their hopes up too high.
"Our hopes have been dashed so many times," Karen said.
Earlier this year, a coalition of disability advocacy groups released a policy brief outlining the disturbing history of transplant discrimination against those with intellectual and developmental disabilities (I/DD). The brief also lays out five key recommendations for policy changes to help ensure that people with intellectual and developmental disabilities enjoy equal access to organ transplants and necessary post-operative care.
As the policy brief notes, despite the Americans with Disabilities Act (ADA), it has been historically difficult to enforce federal civil rights law in the area of medical decision-making. As the mother of two children with autism, this terrifies me.
Ari Ne'Eman, president of the Autism Self Advocacy Network (ASAN) and a member of the National Council on Disability, has called this type of discrimination "a grave civil rights issue."
- By Joslyn Gray