Saturday, August 18, 2012

If They (She?) Only Had a Heart

photo-Thomas Hawk
Creative Commons license

In "The Wizard of Oz" the Tin Man joins Dorothy, the Scarecrow, and the Cowardly Lion on a journey to Emerald City to see the Wizard, in hopes of obtaining a heart.  Paul Corby probably wishes all he had to do was stand up and fight a wicked witch.  Instead, he had to submit himself to a committee of people that dole out hearts for transplant at the Hospital of the University of Pennsylvania (or HUP, as they like to be called).

Usually the committees that decide whether you are "qualified" to receive a heart are fairly secret.  People within the institution may know who they are, but they don't usually put their names out for public consumption.  Such committees that dole out scarce medical resources have a long and storied history.  The original such committee was formed in Seattle when kidney dialysis first became available in the early 1960's.  This committee, dubbed "The God Committee", made decisions on who should be lucky enough to receive dialysis based at least partially on social factors (who had the best job, good character, etc.).  In later years the public was appalled by their somewhat arbitrary means of choosing who would get dialysis (live) and who would not (and would die).  Modern committees that decide who gets scarce solid organ transplants (hearts, livers, lungs, kidneys) have drawn up criteria that make things somewhat more objective (severe heart failure, low levels of oxygen, etc.).  Also included in the criteria are some "softer" things such as the ability to undergo complex medical treatment and emotional stability.

It would come as no surprise to anyone who has had to deal with the stares and snide remarks when you go out in public with an autistic person that the committee to dole out hearts at HUP declined Paul Corby as a suitable candidate.  Because, well, Paul's autistic.  Which means he probably appears to those who first meet him as a bit odd.  Maybe even scary.  Because he's different.  Liable to talk louder.  Or perseverate a bit.  Dr. Susan Brozena, a cardiologist at HUP, sent Paul's mother a letter that said

"I have recommended against transplant given his psychiatric issues, autism, the complexity of the process, multiple procedures, and the unknown and unpredictable effect of steroids on behavior."

There was no indication that the group of people (if indeed, it was a group that decided.  There is some indication that Dr. Brozena consulted with only one other doctor) who decided this did not consult with anyone who actually treats autistic patients to determine his suitability to undergo treatment.  Dr. Brozena evidently feels that it's much easier, when a scarce organ is involved, to go for either money or fame, rather than to try and give out organs equitably.  In a scandal at Los Angeles' UCLA Medical Center, four members of the Japanese Yakuza received organ transplants, allegedly jumping ahead of others on the waiting list. Two of those Yakuza later donated $100,000 each to the medical center.  I'm sure HUP realizes that Paul Corby doesn't have that kind of scratch laying around ready to donate to them.  Which is perhaps why they wish he'd JUST GO AWAY.  Again, from the letter

...if you want to pursue transplant consideration for him, you of course have the option of a second opinion at another center.

 Autism is not a death sentence.  Unless, of course, it's combined with a failing heart, in which case it's enough to get you disqualified for a chance at a cure.

Other stories on this subject can be found in The Washington Post, New York Daily News, Strollerderby blog, and Wesley Smith's blog.

A petition on this is located here.

HUP accepts comments here.

If you'd like to contact Dr. Brozena and let her know your opinion, her published email address is:

Her other published contact info is as follows:

University of Pennsylvania Health System
Heart Failure/Transplant Program
6 Penn Tower
3400 Spruce Street
Philadelphia, PA 19104
Office: (215) 615-0812
Fax: (215) 615-0828

I think that Dr. Brozena needs to know that it's OK to change her mind.


megan said...

When you read things like this you wonder if people really understand what autism is.

Club 166 said...

@ Megan,

Thanks for your comments.

I think the point is not just that they don't understand what autism is, but that THEY DON'T WANT TO TAKE THE TROUBLE to understand what autism is.

These people control a scarce resource (organs for transplant). They don't feel any pressure to make the effort to make simple, easy, accommodations for autistics (or anyone else out of the mainstream). They don't have to, so why should they?


Unknown said...
Introducing Ruth, an Adult on the Autism Spectrum

kate said...

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