Man denied heart transplant because of his autism.

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the f#ck?! that statement might have been in support of him getting a transplant but it is demonstrative of the bigotry behind the decision to deny him one. as if the level of support you require to function in society or the extent to which your symptoms effect you should ever determine how much your life is worth and whether or not you are worthy of life and it should never be used to classify you as worthless in relation to a NT or someone requiring less support. carry on a conversation my arse.

I've signed the petition. Personally if they had not wanted an attack, they should have given them a different reason. What makes them think he cannot have a good life because he is autistic? Why are we always considered left-over. Disgusting!

Hospitals have ethics panels, and I'm sure this got ran passed them. I doubt it was just the transplant surgeon saying forget it.

Hospitals and doctors refuse to treat cases all the time. My friend with cancer, had to shop her records around to 5 big deal hospitals before one would consider treating her stage 4 cancer. Her chemo has stopped working, and was looking into a two specific types of treatment. She is also Bipolar and on a bunch of medications for that. Antipsychotics are known to accelerate weight gain, and cause their own cardiac issues. The medication was the reason for two of the rejection.

My other friend, who is a hemodialysis nurse thought the rejection had more to do with lack of finances and a decent support system, than Paul being Autistic. She said, yes, he has 5 siblings, but are they actively involved with his activities of daily living? It's one thing to say you will help out, but a whole other to get a 3 am call that your brother is melting down, and threatening to leave.

The person who made the statement about Paul yanking out tubes is a moron, and the hospital is letting her/him get tossed under the bus. The hospital doesn't want to eat the cost of his transplant, and if he dies of non compliance, or medical complications, have that affect their successful transplant stats.

If Paul was Bill Gate's kid, would any of this be an issue? Hell and no. Money always buys you options and changes people's minds.

This isn't the first time that an ethics panel has decided against a transplant for someone with a developmental disability on the basis of them having that disability. And that is despite the fact that research has shown that developmental disabilities in general are not a risk factor when it comes to treatment compliance.

It's all too easy to make excuses for authority figures. But being in authority doesn't mean they're right.

I signed the petition, too- I was horrified when I heard about what happened.

http://blogs.babble.com/strollerderby/2 ... -autistic/

Scroll midway down (after the article and before the comments) for a link to the petition.

I don't think it matters how autistic he is. There are some things that matter, but autism isn't one of them.

When there are limited numbers of organs, you have to do the most good you can with them. You give them to the people who are most likely to survive the transplant and be able to take good care of themselves afterward; to the people with the longest life expectancy afterward. Autism doesn't shorten the lifespan. This man has a family to support him. Not being able to name all nineteen of his medications doesn't mean that he can't be trusted to take medication regularly after his transplant. He has parents he's living with who can help him after the surgery. There's no evidence that he is unlikely to survive the surgery or survive for long afterward. He's young and he has family support. In short, he's an ideal candidate. The autism shouldn't matter.

To those of you reading this and feeling angry for this man--you can do something, however minor, to help. Petitions aren't guaranteed to even be read; but if the worst happens and you die young, you can leave your own organs to the people who will need them.

What you need to do to become an organ donor here in the US is to declare it when you are getting your state ID or driver's license. They will put the information on your ID, so that, for example, if you come into the hospital brain-dead after a car accident, the doctors know to maintain life support and transplant the organs you no longer need. It is also advisable to tell your next-of-kin (whoever would be making medical decisions for you) that you want to be an organ donor if you die and leave behind usable organs. If you are younger than 18, you need to make sure that your parents agree. It might be a morbid conversation, but you can use this man's predicament as an explanation: You want to make sure that, if you were to be very unlucky, you could at least help someone else in the process. Be sure that whoever would be making medical decisions knows your beliefs about how much should be done for you if you are ever injured or ill to the extent that you probably won't survive; or if you're in a coma. Regardless, they cannot do organ transplants unless your brain is no longer working at all; so all of those issues will have been considered and decided before then; but since the same person is going to be making the decisions about whether to donate your organs, it's best that they know that as well.

I have a feeling that the doctors don't want him to live, because he's autistic. They want him to die. That's what doctors are like in this selfish world.

No doubt there are some doctors like that. But many doctors are decent people. Perhaps even the doctors on this transplant committee. Were they forced to choose between a single autistic man and a man the same age who had three kids and a wife depending on him? Do they believe that this man cannot take care of himself well enough to survive with a transplanted organ? Do they believe that autism is horrible and they are doing him a favor? We don't know. We don't know whether they are prejudiced, ignorant, or honestly conflicted while trying to allocate a very limited resource. I think, when we suspect prejudice, it is best to first ascertain that the person is actually prejudiced, then to attempt to educate them, and only after they refuse to learn should we impose consequences. There are a great many people who really and truly don't realize what the cultural bias they have heard all their lives is doing to others, and who, if informed, will realize what they have been doing and change. Insisting that this man be considered equally for a heart transplant has the side-effect of educating the people who hear about the problem. Just don't assume all doctors are selfish--judge each doctor individually, and if you still find he is selfish, then you can accuse him.

I understand you may all feel sympathy for him cause he's also autistic. But let's try to be a little more distanced.

Is it really okay to save this incapable guy who would have naturally died long ago at the expense of someone else's life? Do we even know who would have received the heart instead of him? What if that person is autistic too, just high-functioning? Would you be so fast to sign this petition if that was the case?
End of course, we're talking extremes here. He lived 23 years like that,, who says he won't live the next 23? What if the other person is in much more dire need then him?

Khehe, nice aspies you are! Making a choice without having all the information. Where did all that talk about "caring about the truth" and "always trying to make the right decision" go?

this is disgusting.

Speaking objectively here, they haven't provided an explanation - in my eyes - as to why he was rejected. Autism is a very vague psychological difference. they haven't stated if its mild or severe, they've said he can't remember all of his medications (which a LOT of people can't), and that he might rip out tubes?

"He may need to be restrained during the procedure" - yeah because a heart transplant is done while the person in conscious right? how moronic can you be?
Granted, he may need somebody with him that he feels comfortable with when he wakes up. this negative stereotype of "he may rip out tubes" is not justified in any way, shape or form. They haven't stated that he shows damaging behaviour.

Hes 23 years old. he probably has another 40 or so years in him.

Last time i checked a psychological DIFFERENCE - not illness - had NOTHING to do with the heart.

Nrau - you stated that "what if the person is in much more dire need" - if he needs it to save his life, you can't really be in a much more dire need. The fact is, he has been denied from even being on the donor list. if someone came in THAT bad, they would get bumped up the list anyways. But its the fact they wont even list him that i find so completely disgusting.

I signed the petition and shared it on FB.

Best match=first come, first served

I find it apt that they call themselves ethics panels rather than moral panels; the whole existence of ethics is based on "how do we urinate on their backs and tell them it's raining?" Leave it to a NT to devise a concept of finding a way to take more than what they know is right in their hearts but not quite enough to get themselves arrested

It's going to take a pretty big distraction for the rejecting parties to be able to wipe the sh*tstains off their faces from this.

BTW, sign your donor cards people, the morticians just chuck it all in the bin anyway, may as well someone else get some use out of it. I've had mine since 1994.

I showed it to my friends, they too signed the petition and where as appalled if not more, than me.

is this man sufficiently high-functioning to keep on top of his antirejection meds? [if he did indeed ever get the transplant]

God be with the family, and I hope the mother and others can force a change in that decision!

I myself may need a heart transplant in the future, as I'm only 45, and I have a congenital heart condition which is deteriorating, and I'll at very least need open heart surgery in the next several years, and only time will tell whether or not that surgery will be a lifelong repair. This story appears to have nothing to do with insurance or Obamacare, although I am confident that there is nothing in Obamacare law which would help at all. It sounds like the answer is in finding more donors, or in technology to create better artificial hearts or to use stem cells to grow new hearts.

Charles

This is beautifully put.

On the separate discussion thread someone made the point that that the number of donor hearts is not necessarily fixed, that if medical institutions take the high road and treat people as human beings, families will likely be more open to the idea of donating the organs of a loved one.