Autism = No Heart Transplant

[noahvale]

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[jbeany]

Sounds to me like he's got a lot more mental issues than just the autism.  The transplant teams run those of who are mentally stable through the wringer to see if we are capable of the focus needed to take of a transplant - why should he get a free pass on those issues because he's also autistic?  And if he's only going to be able to take care of it because his parents do it, what happens when something happens to them?  He's already in his 20's.  How old are they? 

I don't agree with the Corbys.  Mental health SHOULD be a factor in organ transplants.  I don't think it should be an automatic exclusion factor, if someone is autistic or mentally handicapped, but those cases should be looked at individually.  Which sounds like the hospital's policy already.

And of course the hospital can't talk to the media - it's called, HIPPA, duh. 

[Deanne]

I think transplant centers need to be even more cautious about hearts than they are about kidneys in making sure the recipient is able to take care of the organ. After all, someone else likely died so this particular patient could have a heart. Which would be a better recipient? Someone with anger issues who has never held a job/likely never will have a job/spends his days playing video games and will forever depend on someone else to pay for his meds, or someone who will return to an independent life and be self-sustaining. Under those circumstances, I think they made the correct choice, regardless of the autism diagnosis, because of all of his issues put together.

[MooseMom]

Autism is a developmental disorder, not a mental illness.  That's the first and foremost flaw in this argument.

It is entirely possible for an autistic person to develop a mental illness just like it is entirely possible for a neural normal person to develop the same, but again, autism is not a mental illness.

Autism is a spectrum disorder.  One autistic person will be very, very different from another autistic person.  One autistic person might be non-verbal and non-compliant whereas another at the opposite end of the spectrum might be the perfect recipient because they are so obsessed with following the rules (and would therefore never miss a med or an appointment).

Autistic people have innate personalities just like neural normal people do.  They are individuals with their own quirks just like the rest of us.  I remember shouting at the top of my lungs and throwing my pillbox at the wall just a month after learning how bad my kidneys were, but no one thought I was "mentally ill." 

How do we judge someone's value?  Maybe this kid plays video games all day because his heart doesn't work well enough to enable him to do much of anything else.

Does one's employment or chance of employment give them a special value?  I haven't been in paid employment since I had my son 21 years ago.  Does that make me unworthy of a transplant?

We don't know if this kid will be forever dependent upon someone else to pay for his meds; he's probably never been healthy enough to hold down a job.  Maybe he is the victim of discrimination if no one will give him a chance at employment.

Do we ration organs based on a person's ability to pay?

No one particular person died so that this particular guy could have a new heart.

I don't know why Paul Corby's cardiologist is making any sort of recommendation about anything other than his cardiac health.  Is she an expert in autism?  Did the transplant team even bother to have Mr. Corby examined and evaluated by anyone who knows anything about autism?

In the Philly article, Penn states that they look at a patient's medical prognosis after tx.  There is no reason to believe that autism in and of itself would reduce a patient's life expectancy after a tx.

I am hoping that there are other mitigating factors here that the hospital cannot legally disclose and that they are not just hiding behind the veil of privacy for their own convenience.  The Corby's should take the hospital's advice and get a second opinion.

Imagine being the mother of a son who, upon learning he has been denied the chance at a normal life because of his autism, asks "Why"?  What would you say to your son?

[MaryD]

I don't think it the autism which should be questioned.  If the person has a mental illness and is religious about taking their medications, I would think they would be suitable for a transplant.  If they don't take care with their existing medication or are not capable of looking after their own treatment, then surely the transplant stands a good chance of being unsuccessful.

[Jean]

I also do not think the autism should be brought in to the equation. If he is normally compliant, it seems he would also be with his meds and any other thing that comes up, ie: diet, Dr. appts. How sad that we are beginning to think who "deserves" a tx or has it always been that way and in my normal state of " head in the clouds" I did not notice. However, I do know that with my age and my CHF, I dont even think of a kidney transplant, as I know I would never get one.

[Rerun]

I say put him on the list because it all comes down to priorities anyway.  First you have to show you have the money to pay as heart transplants don't get the Medicare ride like we do.  Then and then and then on down the list.  So if a heart became available that No One could take but Paul then give it to him.  Then everyone is happy.  It doesn't hurt to list him.  That doesn't make a heart available to him just like everyone else.

I think when I was listed in Sacramento it was only because I threw a FIT.  They knew I was going to move back to Spokane so they didn't want to list me.  So after the FIT they listed me but with no intention of ever giving me a kidney.

[Rerun]

Do we ration organs based on a person's ability to pay?


Oh Yes!  WE do....   Other transplants don't get medicare unless they are over 65.   Only kidney transplants are paid for by Medicare and drugs for life.

Why do you see all these other organ transplants have FUND raisers and such?  They have to come up with so much money to have the surgery and then money to pay for their drugs.

Doesn't seem fair does it?

[Jean]

 I did not know that and no, it hardly seems fair at all!!!

[noahvale]

^

[jbeany]

Do we ration organs based on a person's ability to pay?


Oh Yes!  WE do....   

The FIRST question the transplant coordinator asked when she called me about my kidney was, "Has your insurance changed?"  If I didn't have coverage, the conversation would have ended and she would have called the next person on the list.  Period.

[MooseMom]

The ability to pay does not seem to be a factor in Mr. Corby's case.  I have seen nothing in the articles posted that indicate this is an issue.

[Rerun]

I did not know that the drugs for life was not included.  Thank you for that. 

So getting a transplant does boil down to money.  I thought that shouldn't matter.  So we ARE buying our organs.
Hmmm something to think about. 

[MooseMom]

Do we ration organs based on a person's ability to pay?


Oh Yes!  WE do....   Other transplants don't get medicare unless they are over 65.   Only kidney transplants are paid for by Medicare and drugs for life.

Why do you see all these other organ transplants have FUND raisers and such?  They have to come up with so much money to have the surgery and then money to pay for their drugs.

Doesn't seem fair does it?

No, it doesn't seem fair, but money talks, especially when you are ill.