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.

1. Pennsylvania Mother fights for
Disabled Son's Right to
Medical Care
http://www.facebook.com/pages/Proud-to-be-from-Pennsylvania/272645216184951

2. 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.
http://www.facebook.com/pages/Proud-to-be-from-Pennsylvania/272645216184951

3. (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.
http://www.facebook.com/pages/Proud-to-be-from-Pennsylvania/272645216184951

4. Paul Corby was born with left ventricular noncompaction, a 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.
http://www.facebook.com/pages/Proud-to-be-from-Pennsylvania/272645216184951

5. 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.
http://www.facebook.com/pages/Proud-to-be-from-Pennsylvania/272645216184951

6. 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."
http://www.facebook.com/pages/Proud-to-be-from-Pennsylvania/272645216184951

7. 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.
http://www.facebook.com/pages/Proud-to-be-from-Pennsylvania/272645216184951

8. 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.”
http://www.facebook.com/pages/Proud-to-be-from-Pennsylvania/272645216184951

9. “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.”
http://www.facebook.com/pages/Proud-to-be-from-Pennsylvania/272645216184951

10. 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.
http://www.facebook.com/pages/Proud-to-be-from-Pennsylvania/272645216184951

11. 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.
http://www.facebook.com/pages/Proud-to-be-from-Pennsylvania/272645216184951

12. "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."
http://www.facebook.com/pages/Proud-to-be-from-Pennsylvania/272645216184951

13. To find out more about current news and events
in Pennsylvania, please visit
http://www.facebook.com/pages/Proud-to-be-from-
Pennsylvania/272645216184951
http://www.facebook.com/pages/Proud-to-be-from-Pennsylvania/272645216184951