Man denied heart transplant because of his autism.

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I'm confused by the petition, yesterday only needed 12,000 signatures, with about 88,000 signed. Today it has 212,697 but needs 87,303. What's going on?

It's definitely gone viral, 150,000 signatures in 3 days is amazing.

Jason.

Perhaps Paul's biggest challenge with post-transplant medication will be the anger and steroids issue as follows:

But, as we see, there may be alternatives. And the whole reason doctors go to medical school is to help patients and families with difficult issues, and not just cherrypick the easy cases.

It seems there are 2 issues here:

That a young man is being denied a heart transplant due to his autism, which is reprehensible and a good reason not to seek a diagnosis until there are protections for diagnosed autistics (where the hell is our "autistic rights" parade?)

And the role of some "new health care law" in all this, which you seem to have magically manufactured from the posterior portion of your large intestine. And I know this, because it clearly states in the article that individual hospitals decide their own criteria for transplants, and it is not part of any government policy.

very cold stuff indeed and I'm as objective as they come. Mind you, it's hardly out of place with other realities of being autistic: Denied jobs, denied friends, denied partners, denied children, denied organs. It appears much less surprising buried in that list

I think the general public is midway between two stereotypes:

1) 'An autistic person is a person who cannot speak who engages in repetitive motions.'

2) 'An autistic person is either a person who cannot speak or a person who's famous with a high IQ.'

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Well, of the two, the second stereotype is better!

And I really think the next step is to present to our fellow citizens: Most people on the Spectrum are middle functioning just like most people in general!

And sure we might have sensory issues, patchy intellectual and social skills, just like most people, although our's might be a little bit more. And amazing what we can do with some help along the way.

A third point is that insurance companies have frequently decided to allow insured people to die by not covering life threatening ailments when they come up. My cousin's son had leukemia and her husband was booted off his employer's insurance not too long after they started treatments, and this was in the 1990s.

He didn't die, but only because of a lot of fund raising.

you might be amazed to know that insurance companies and employers routinely make back [insurance] bets on the covered person dying, they get ya coming and going.

That is terrible behavior on the part of the insurance company. I'm glad your cousin's son made it, and I'm sorry the family had to go through this.

The executives of this insurance company should be hauled into court, not merely on civil charges, but on charges of criminal fraud.

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Instead, weirdly, people aren't allowed to sue health insurance companies. It is an absolutely bizarre situation. You can sue a car repair place for doing a bad transmission repair, but you can't sue a health insurance company. As I understand it, this came about from almost a technical charge in laws governing HMOs in the early 1970s, and the insurance companies have sure run with it.

Now, many of our fellow citizens are basically against lawsuits. I think in large part what it really comes down to is that they are against someone else winning a "jackpot" or "lottery" when they do not. Well, we need to have a real conversation. And apparently, keeping the possibility of "jackpots" and "lotteries" alive is one of the things which keep insurance companies in line.

feels like i'm watching Fox News or reading the Huffington Post!

i feel for the family and this individual, truly. but i will not go into berserker rage because of this headline and article. the articles states:

"The cardiologist at Penn Medicine told Corby that Paul was denied 'given his psychiatric issues, autism, the complexity of the process, multiple procedures and the unknown and unpredictable effect of steroids on behavior,' according to the letter Corby released."

this doesn't say he was denied because he has autism. that's part of it, but even this snippet includes other factors at play. it also doesn't show the entire letter. you could take a snippet of this post and put elsewhere that i said "i'm watching Fox News". it's part of my post, but does it give any context or meaning behind that?

if this individual was denied a transplant purely on the fact that he has autism, then that's absolutely horrible. but a red flag has gone up here to say there's a bit more behind the headline created to drive clicks. you are all smart people. i tend to think most aspies fall into the smart and skeptical category and would expect more than reactionary posts.

does anyone have more information or a link to such?

The steroid issue is really the only one that is a legitimate cause for denying him a hear transplant--if he can't take the steroids he needs to stop him from rejecting a new heart, then he's not a good candidate. But if there are alternatives that are nearly as good, then the steroid issue shouldn't keep him off the list.

I too would like more information. Ideally, they would be making the choice based on his likelihood of long-term survival. Autism is a life-long condition, and doesn't reduce the lifespan--it should be irrelevant for the purposes of heart transplants, unless as with the steroids it affects whether a person can benefit from treatment.

I'd love to think that they rejected him based on the idea that he simply could not benefit from a heart transplant, or could not benefit enough to justify putting him on a wait list with other people who had the potential to survive much longer than he did. I'd love to think that they didn't at some point say, "But he's autistic; so his quality of life will automatically be lower than a non-autistic person's even if the transplant goes perfectly." But... I suspect that they did say something like that. Too many doctors seem to believe that anything less than perfectly able, perfectly healthy is a failure on their part--they want to cure people, to turn them into totally healthy, totally normal. And because making somebody totally healthy is a good thing, then disability must be a bad thing... Doctors don't think about it from the viewpoint of the disabled person, who on average enjoys life just as much as his non-disabled counterpart.

I deliberately didn't look into this very deeply when a friend posted it on fb - I know myself just well enough to know it wouldn't be helpful regardless. I did see in those comments that typically the big issue for transplants comes down to medication - either prescribed meds that are damaging to the organ they're looking at replacing, or the patient's ability to reliably take anti-rejection meds after the procedure.

I dunno, I sorta feel like any time you're looking at a scarce life-saving resource, you're obviously going to have to make tough decisions. I'm nowhere near knowledgeable enough to think I'm the one that ought to make them =/ I signed the petition for awareness, not necessarily because I think someone made the wrong call.

I think we can just look at the doctor as an adolescent.

Maybe the doctor became overly serious at age 14 or earlier, largely became a rule follower and someone skilled at negotiating through a system, and doesn't really have much patience for those who aren't.

I mean, take the doctor at her word:

She is primarily focused on the fact that Paul may not be a good pill-taker.

Yeah, but what does not being able to memorize nineteen medications have to do with being able to take them reliably?

And what is wrong with Princess Peach?

Nothing to do with it.

And nothing at all wrong with Princess Peach.

Basically, the doctor is a goody two shoes. She's a normalist, who needs to be educated (as well as gone around, with appeals, new institution, etc)