Posted by: manifold
Hopefully most of you have already seen this going around, but if you haven't, please sign this change.org petition for Paul Corby to get a heart transplant
Paul Corby is a 23-year-old man diagnosed with PDDNOS, who also has Left Ventricular Noncompaction—i.e., noncompaction cardiomyopathy
. The survival rate for a symptomatic patient without a heart transplant is, to put it bluntly, dire
. His father had the same condition, and died from a stroke at 27. Between this and the likelihood of heart failure, Paul is unlikely to live past 30 without a heart transplant.
According to the Stollerderby blog post about it
, the transplant physician at PennMedicine denied Paul placement on the national heart transplant list. Here's the quote of her explanation for why:
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.
"Psychiatric issues" refers to the fact that, like the majority of autistic people, Paul has anxiety and depression which stem from the sensory and social aspects of autism—so it is basically saying "given his autism and also his autism" right there.
"The complexity of the process" and "multiple procedures" are basically word filler: a heart transplant is a complex process involving multiple procedures for everyone
who undergoes one. No physical reason for why his body would not be able to handle the complex process or multiple procedures is given.
And "the unknown and unpredictable effect of steroids on behavior"—steroids are used for antirejection purposes in the context of transplants
. There is pretty much no real comparison between the monitored administration of steroids in a medical context and the ROID RAAAAAGE of steroid misuse/abuse. Plus, even if extreme irritability or aggression were to occur, in Paul's case it is much more likely to be caught early because
he is autistic and regularly receiving psychiatric treatment for a mood disorder. His mood is already being monitored—even relatively small changes in it will be noticed right away
and dealt with.
But given this doctor already citing "psychiatric issues" which basically are the autism again, it seems very likely that "the unknown and unpredictable effect of steroids on behavior" is a discreet way of saying "autistic people are already scary angry dangerous people and steroids will make him into THE INCREDIBLE AUTISTIC HULK".
(The, uh. Incredible Autistic Hulk with... cardiomyopathy. OH BOY, SO DANGEROUS.)
So, in summary, he was not put on the list for reasons that basically boil down to: autism, autism, clouds are in the sky, the sun is in space, autism.
There isn't even a specific heart
in question here, or his position
on the list, or any questions of comparison to other patients who need heart transplants. This is an outright refusal to even put him on the waiting list in the first place
. Because he's autistic.
That is fucking terrifying
At the time of writing this, the Change.org petition had 199,086 signatures out of 200,000. It's probably (hopefully) going to go over 200,000. Don't take this to mean it's over. Sign the petition if you can
, spread the word whether you can or not. The more attention this receives, the better.