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Wednesday, 15 August 2012

Paul Corby Denied Heart Transplant; Autism Cited as One of Factors


Philadelphia hospitals, I'm now caught up on what's happening with Paul Corby. Congratulations, you're the first in the blog to hear this in Paragraph One of an entry: Meet me at camera three.

Because, seriously, what are you thinking?

Paul Corby's Story


Let's bring everyone else in on this, shall we?

Paul Corby is 23 years old and happens to have Pervasive Developmental Disorder Not Otherwise Specified, which is an autism spectrum disorder. He also needs a heart transplant. The doctors at the Hospital of the University of Pennsylvania don't think he's a good candidate, “given his psychiatric issues, autism, the complexity of the process, multiple procedures and the unknown and unpredictable effect of steroids on behavior.”


I admit that while I'm very grateful for the successful resolution of Amelia Rivera's case at the Children's Hospital of Philadelphia, I'm hotter under the collar about this than I used to be. I'm getting really tired of reading about people with disabilities being discriminated against by the medical community because of outdated ways of viewing them and their potential.

Assumption of Bad Outcome


Penn Hospital, this part's for you in particular.

I see here an assumption that because Paul Corby has an autism diagnosis, there's automatically such a large chance of a bad outcome that a heart is better off with someone else.

I know that donated organs are scarce, and that a lot of consideration has to go into especially who gets a heart. Yes, there could be aspects of stereotypical behaviour associated with autism that could make the recovery process associated with a transplant difficult. However, I saw a heck of a lot of people when I was in stroke rehabilitation and recovering that had a lot of difficulty with the process, and it wasn't because of any diagnosis that I knew of...they were just people having a difficult time with recovery! 
Regular readers know that I went through a few difficult periods myself, that certainly weren't anticipated and required some extra support from staff while I worked out whatever was happening...but the support got put in place, and the issues got worked out.  You can't assume that a diagnosis automatically means that a person can't deal with transplant issues (or that a lack of one automatically means that they'll be able to, for that matter).

This attitude of "Hands off our heart because all these things could happen because you're, you know, autistic" is just blatantly discriminatory, offensive to people with disabilities everywhere, and suggests that you don't have much confidence in the team that would be offering Paul Corby care afterward. Are you so frightened of the word "autism" that you doubt your ability to work with this young man, who is obviously creative, accomplished and, most importantly seems perfectly capable of expressing what he needs and wants? And who seems to have a loving family committed to assisting him to meet the challenges in his life? It seems to me that your support teams would have had to deal with individuals that present many more barriers to positive outcomes after serious medical procedures.

Running Down the Case


Here's another article about Paul Corby's struggle:

Taking the two articles together, we've got this support for him:
  • 2 doctors that suggests that "autism", as an exclusionary term, is too broad.
  • Other hospitals that are willing to give a second opinion.
  • Paul Corby has an extensive support network.
  • Paul Corby isn't a smoker or a drinker.

The Point


Penn Hospital. Really?

I'm not asking you to give him the transplant. I understand that you may have legitimate reasons for denying him the transplant that I don't understand.

But, for God's sake, take the autism diagnosis out of it. Do the right thing.

Get it together, Philadelphia hospitals.

Petition: "Help My Autistic Son Get a Life-Saving Heart Transplant" - http://www.change.org/petitions/help-my-autistic-son-get-a-life-saving-heart-transplant


2 comments:

  1. I love how everyone who talks about this topic skips the psychiatric problems part and the 20 medications part. Autism isnt the ONLY thing he has going against him and you should stop pretending it is. There are plenty of people who need hearts without psychiatric problems and that DON'T take that many medications, some of which could conflict with his immuno-suppressants. Also no one knows how he would behave on steroids or while being held in the hospital with many tubes and machines stuck in him.

    It's not so black and white and you should have more sense than to think of it in just one direction. "IT'S AUTISM" or "IT'S NOT AUTISM" whether or not he deserves it, it sits somewhere in the middle

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  2. Hi Troy...thanks for your comment.

    I'm not advocating that they out-and-out give him the transplant. I know that there are other factors at work besides the autism. If you read the post, you'll see that I acknowledged that. The medications are certainly a concern!

    From a disability advocacy standpoint, however, my concern is that the concerns that are associated with the autism are ones that you could have about the population in general, or about other populations with psychiatric diagnoses who have successfully had the transplant. What I and others are asking is that he not be summarily dismissed as a candidate simply because he has autism. That's all. And apparently other physicians agree, if you look at the sources that I cited.

    Like you said, it sits somewhere in the middle, but the wording on the letter does *not* reflect that. If the Mayo Clinic is willing to re-evaluate his case, does that not say something?

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