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Summary: A Pennsylvania woman whose autistic adult son was not recommended for a heart transplant because of his psychiatric issues and autism wants to ensure that others with disabilities are not passed over without careful consideration. Quote: “He just needs a fighting chance and the same rights to medical care as others his age.” Karen Corby referring to her autistic son Paul, age 23. (August 22, 2012) – The rights of the disabled to receive equal access to medical care have been spotlighted by a Pennsylvania case in which a 23 year old man was denied a heart transplant from the Hospital of the University of Pennsylvania last summer over concerns about his “psychiatric issues” and “autism,” among other factors. Paul Corby was born with left ventricular noncompaction, condition in which a damaged left ventricle makes it impossible for his heart to pump the right amount of blood. He and his family learned about the condition in 2008, and last year Paul was told he would need a heart transplant in order to survive. In Paul's case, however, the situation was complicated by the fact that he has been diagnosed with Pervasive Developmental Disorder. PDD is a group of five disorders characterized by delays in the development of multiple basic functions which affect interpersonal socialization and communication. The most common PDD is called Pervasive-developmental-disorder-not otherwise specified (PDD-NOS) and includes atypical autism. The other four Pervasive Developmental Disorders are Autism; Asperger syndrome; Rett syndrome; and Childhood disintegrative disorder. Although Paul is able-bodied and high-functioning, the Hospital of the University of Pennsylvania declined to put his name on the heart transplant list. A letter from the hospital said that the denial was made “given his psychiatric issues, autism, the complexity of the process, multiple procedures and the unknown and unpredictable effect of steroids on behavior." Karen Corby, Paul's mother, was taken aback by the hospital's decision and has started an online petition at http://www.change.org/petitions/help-my-autistic-son-get-a-life-saving-heart-transplant to ask that her son be able to receive the transplant that is necessary for his survival. So far the petition has gained more than 250,000 signatures in support and has started a debate about the ethics of using autism as a disqualifying condition for medical procedures. While the University of Pennsylvania Health System is unable to discuss individual patients' cases and so cannot specifically comment on Paul's situation, a recent statement issued by spokeswoman Susan Phillips noted that “when individuals are referred for transplant consideration at Penn or any other certified transplant center, all aspects of their medical status would be reviewed.” “This includes the current health status and post-transplant prognosis of the recipient, the impact of other existing health problems on the success of the surgery itself and over the longer term, as well as the potential interaction between a patient’s existing drug therapies and the drugs that would be necessary to stop transplant rejection.” So far there has been no word from the hospital as to whether it would reconsider its decision to deny Paul a heart transplant in spite of the outpouring of public support for his mother's petition, which has also gained attention from advocacy and support groups for those with autism and other cognitive disabilities. In addition to Karen Corby's petition site, a number of other websites are helping to spread awareness about the discrimination that people with developmental disabilities may face in regard to receiving medical treatment. Among these is http://www.facebook.com/pages/Proud-to-be-from-Pennsylvania/272645216184951 ,a Facebook fanpage that offers an online community where people can share their thoughts and comments about the latest Pennsylvania news and events. "We feel it is very important to get the news out about Paul's situation and the role developmental disabilities should have in determining a person's medical treatment," notes page administrator S.S. Ober-Lehn. "And Facebook's international appeal makes the Proud to be from Pennsylvania fanpage a natural place for anyone who is concerned about this situation to come together to discuss this complex issue and help spread awareness about it."
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pennsylvania, disabilities, right to medical care, autism,
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