Paul Corby. Denied heart transplant.

This blog entry is a result of my reading about the decision made by Penn Medicine regarding Paul Corby. By the way, go sign the petition should you read the information from those links, other news sources, and/or the contents of this blog. [Which was written thanks to a blog by a friend which was the catalyst I needed to write this coherently.  You can find more about that post below the jump.]

When it came to the heart transplant of [specifically] Paul Corby he did deserve equal consideration.
Other than the heart defect, there was nothing apparent [or expressed] about his physical health that would make him ineligible. Yes, he is an adult with different issues [autism and both possibly-related/co-morbid mood disorder and possibly-related unknown medical reactions; exhibited inability to manage his own medications; and possible reactions between current and necessary medications [ie: imbalance between medications, not necessarily life-threatening].

What I see as the main arguments that are important to consider in regards to otherwise healthy individuals in similar situations:

1. Autism should not be viewed as a life-threatening "disease" that affects whether one can be on a transplant list.
2. Even though Paul is an adult and it would be unlikely that Paul could manage his medication, Paul is currently under care and would likely remain under care. Unless we are going to deny transplants to children [who also cannot manage their own medications] then we need to make sure that the inability to manage medications for someone under care due to circumstances that render the individual more like a child [not as in someone who otherwise would have the capacity but fails due to already-established criteria which I cannot recall currently] but otherwise contributes/engages in society. [Do not construe this as though I am saying anything to the effect that I wish to exclude mentally handicapped - I just have spent too long wording this part and wanted to emphasize that Paul has exhibited involvement in society as a whole and I need to end this before it becomes a blog entry on a blog entry.]
3. Yes: Paul is on other medications and there is concern as to how his person and his existing medication will react/be affected by adding the necessary medications [of which, the only one that was noted as a concern was the steroid] but the person managing his medications had reached out and was willing to be actively involved in managing/adjusting the other medications to find a balance that worked.

I think every citizen pending a decision to be placed on a transplant list deserves the equal privilege of consideration which I do not feel was given to Paul Corby.

I feel that the information provided demonstrates that [in the specific case of Paul Corby] the deciding physician did not consider that:

1. the autism and co-morbid conditions were not fatal, degenerative, nor significant/uncommon
2. Paul received care assistance in certain areas, similar to a minor child, and would have been able to maintain necessary medications
3. a different health-care provider, with experience in the specific area of Paul's medication therapy and needs, was going to step-up and be actively involved in managing any medication adjustments which would be necessary.

Blog entry by Aspie_Warrior which provided the catalyst which allowed me to write this blog entry.

And my comment on his blog:
Okay, so what I like most about having met you during this whole blogging experience is that I feel that you make me think and when I attempted to respond to this earlier, I actually ended up writing an entire blog entry about how I felt regarding Paul Corby. Which I think may be one of my most-coherent!  So, thank you.  And now: the comment:

I agree with a facet of this [and we have been discussing this frustration much of the last five days] and think this was written in a way that makes a great point [and obviously a great discussion].  We [being individuals with autism or other "diffabilities"] need to remember that part of how we get treated is a direct reflection of how was "ask" to be treated by what we say and how we say it.  Just as we expect others [non-autistics] who are messaging/advocating on our behalves to remember that even the things they say [about us] only during the times when they are upset/frustrated are still heard and make an impact; so must we remember that what we say [and how we say it] makes am impact on how we are viewed by everybody. [Which is complicated for those of us who have deficits understanding the NT social interactions.]

But then again, I think your stance against not being a victim is maybe more of not WANTING to be a victim.  I know I have been a victim.  I was the victim of my family's ignorance [and still continue to be]; I am the victim of hundreds of small social misunderstandings/miscommunications every day [that no matter how good my intentions or how much I try to explain what I mean always get "read" by a playbook that I do not even understand]; and I was a victim of my workplace.

When it came to the heart transplant of [specifically] Paul Corby he did *deserve* equal consideration.

[and I will not post the entire thing here - I did say I ended up with an entire blog entry which can be found here: ]

I think every citizen pending a decision to be placed on a transplant list deserves the equal privilege of consideration.