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Petition for Paul Corby Hits a Major Milestone; Autistics and Advocates Speak Out About Transplant Controversy

By joslyngray |

Paul Corby, a 23-year-old man from Pottsville, Pennsylvania, has become a veritable Internet star. After Mr. Corby was denied placement on the heart transplant list by Penn Medicine, part of the Hospital of the University of Pennsylvania, his mother Karen started a petition on change.org asking the medical facility to change its mind.

A letter from Penn Medicine, sent to Ms. Corby, gave a handful of reasons for the denial. The factors were the complexity of the procedure, his psychiatric issues, and the unknown effects that steroids might have on his behavior. Another reason listed in the letter, right there in black and white: autism.

In addition to having a rare congenital heart disease, Paul has an Autism Spectrum Disorder called Pervasive Developmental Disorder-Not Otherwise Specified, or PDD-NOS.

The autism community at large is horrified and disgusted that autism could have any bearing at all on the decision whether or not to give a person a life-saving medical treatment.

When Strollerderby published our original post on Paul Corby exactly two weeks ago, Karen’s petition had about 4,200 signatures. Last week, when I updated you about Paul’s story being picked up by the Philadelphia Inquirer, Philadelphia news networks, and ABC News national, the petition had jumped to 10,000.

Guess where it stands today?

People with autism, and the people who love them and work with them, aren’t the only ones who are outraged: today, the petition on change.org passed 250,000 signatures.

Although Penn Medicine has yet to make any comment other than, essentially, “no comment,” plenty of other people have something to say. Perhaps the most important opinions in this matter, besides those of Paul Corby himself, are the opinions of those who are themselves on the spectrum. So often when discussing issues that affect the autism community, we only hear from medical and psychiatric experts, and from parents (like myself). Mainstream news outlets do not feature the voices of adults on the spectrum nearly enough.

Below, six self-advocating adults who are themselves on the autism spectrum share their thoughts about Paul Corby’s story, and the ethics of using autism as a disqualifying factor in a transplant decision.

Another important advocate for those with cognitive disabilities also shared a statement: Tim Shriver, the CEO of Special Olympics. I had reached out to him because his blog post about Amelia Rivera, a little girl initially denied a kidney transplant, marked a real turning point in Amelia’s story. We learned recently that Amelia will, in fact, be able to proceed with a kidney transplant at Children’s Hospital of Philadelphia.

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Petition Signatures Soar; Big Names Support Paul Corby

Timothy Shriver, Ph.D.

"It saddens me to hear of yet another person with different abilities is being denied a treatment that is a matter of life and death," said Dr. Shriver in an email to me. "I'm not a lawyer so I don't know if denying Paul Corby a transplant is a violation of his civil rights. And I'm not a medical doctor so I don't know if denying Paul Corby a transplant is a violation of the hippocratic oath. But I am a parent and citizen and a friend of people with intellectual differences and I do know one thing: their lives are just as important as anyone’s. Fortunately, this week we also received good news in our fight for medical justice – according to New Jersey Today, on August 21, the State Senate in New Jersey passed a bill prohibiting discrimination of people with developmental disabilities with regard to receiving medical treatment in hospitals. We urge more lawmakers to join Special Olympics in a dignity revolution and take a similar stand against discrimination.”

Dr. Shriver holds a doctorate in education. As the Chairman and CEO of Special Olympics, he serves more than 3 million Special Olympics athletes in 180 countries.

(Photo Credit: Special Olympics)

(Image Credit: Corby family photograph)

Recent posts from Joslyn:
Update on Paul Corby: Autistic Man’s Quest for a Heart Goes Viral
Seriously? 15 Things That Have Been Banned in Schools So Far in 2012
Lights, Gifts, Cookies! How American Families Are Celebrating Eid Al-Fitr
West Nile Virus: What You Need to Know

Read more from Joslyn at Babble Pets and at her blog, stark. raving. mad. mommy.

You can also follow her on Facebook and Twitter.

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About joslyngray

joslyngray

joslyngray

Joslyn Gray is the mother of four children with a variety of challenges ranging from allergies to ADHD to Asperger Syndrome. She writes candidly and comedically about this and her generally hectic life on her light-hearted personal blog, stark. raving. mad. mommy.. Read bio and latest posts → Read joslyngray's latest posts →

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5 thoughts on “Petition for Paul Corby Hits a Major Milestone; Autistics and Advocates Speak Out About Transplant Controversy

  1. Neal Spencer says:

    How could anyone say no to a human life that can be saved, no matter what the circumstances are? Who are the individuals on this death panel?

  2. Barbara B. Hack says:

    There is not one person in this world who is perfect, we all have medical issues and that is absolutely no reason not to give that young man a heart transplant. Everyone deserves to have that second chance at living a more normal life (if there is such a thing). I had polio the summer before I was to start high school. My family was at a chruch camp in Iowa when I got deathly ill, could not move my neck, could not keep anything down. We went directly to our Dr. and received treatment immediately and I had very few problems because it as treated aggressively. I had bulbar polio, trouble with breathing. I did not have to go int an iron lung., but a lot of kids did. I was one of the lucky ones. Lets make this young man be able to receive a new heart. My prayers are with him and his family.

  3. Lu Randall says:

    I just want to know whose idea of autism triggered the denial. Did professionals who treat adults with autism do Paul’s psych eval? Or was it regular transplant team? Did Paul get to discuss autism’s attributes like love for routine and being a stickler about rules and time scedules, things that would benefit his aftercare regime? Why was he asked to list 19 medications, a test any of us would fail without studying for days. Do 70 year olds with less than perfect memories get denied or are they allowed to use a list like anyone else? So many questions. So little time. Hoping hard for second opinion and soon.

  4. Kathryn says:

    I think the transplant team is being disingenuous. If Paul is managing his regime of 19 meds (whether or not he remembers the names) now, even if he needs help doing it, why the assumption that he won’t be able to manage the anti-rejection meds? “What if something happens to his mother and she can’t help?” Well, there are other potential caregivers, plus automated reminders. Why not ask “What if the recipient lives alone, falls down in the bathtub and can’t get up? What if the recipient has a stroke or a car accident that affects their executive functioning?” Life is uncertain for all of us, not just those of us who are autistic, so why use this as an excuse?

    Also, regarding the potential mental effects of steroids, would it be ethical to give him a trial on those medications and see how he does? Different steroids have different side effect profiles, so is there enough leeway to tailor the meds to what affects him the least? And even people without autism have problems with them. Again, I don’t think that argument stands up to rational assessment.

    I agree with Lu that it could make a big difference whether or not Paul was assessed by people familiar with autism.

    If Paul is a good transplant candidate in other respects, autism is not a reason to deny a transplant.

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