Denied a heart transplant due to prejudice

[KamaAina]

It's not what you think.

http://www.post-gazette.com/opinion/Op-Ed/2015/06/10/People-like-Paul-Corby-should-not-be-refused-live-saving-organs-based-solely-on-unrelated-disabilities/stories/201506100070

Karen Corby of Pottsville, Pa., had just been informed by a doctor that a much-needed heart transplant for her son, Paul, had been denied. To add insult to heartbreak, after hearing the bleak news over the phone she was told by the cavalier physician to “have a nice day.”

“It was overwhelming,” recalled Mrs. Corby in a recent interview. “As if hearing the diagnosis of left ventricular non-compaction wasn’t bad enough, we then had to learn that Paul is not a candidate for this life-saving surgery because of his autism. It makes you think society feels they’re not worthy of saving.”...

Despite attempting to create objective rationing systems for the allocation of organs, it can still be difficult to differentiate between discriminatory policies and sound clinical judgment. One thing is clear, though: Intellectual and physical disability should not be the sole disqualifier for a child in need of an organ transplant.

Part of the problem is that we still are haunted by a darker time in American medical history when people with intellectual and physical disabilities were routinely discriminated against and warehoused in large state asylums. Considered a blight on society, some of these so-called “feeble-minded” children were seen as useful only as raw material for medical experimentation.

I sure hope I don't ever need a transplant!

[HassleCat]

1. Life span

Some people with certain disabilities die at a young age. This may be a factor.

[KamaAina]

2. Autism is not one of them

I'm still going strong at almost 51.

Our life expectancy is only slightly shorter than average, perhaps because we are more prone to get into accidents than neurotypicals (the rest of you).

[Angry Dragon]

7. They gave Satan Cheney a new heart

He has no soul .......... that seems to me a severe disability

[rocktivity]

3. (Pre-click prediction) CHOP

Chrissy Rivera’s daughter Amelia was born with Wolf-Hirshhorn syndrome, a rare genetic disorder. Despite her need for a kidney transplant and the fact that she had a personal donor, Children’s Hospital of Philadelphia denied her the procedure. Mrs. Rivera said she was told her daughter did not qualify because she was “mentally retarded.”

The public outcry was immediate. Faced with a national uproar and searing news stories, the hospital apologized and approved the procedure. Amelia, now 5, has been given a new lease on life. “She’s doing great now,” her mother says. “She has more energy, and she’s more vocal.”

...In 2013, when state Rep. John Sabatina Jr. introduced legislation, supported by The Arc of Pennsylvania, to help families like the Corbys, their hopes were uplifted. But House Bill 585, also known as “Paul’s Law,” which would allow transplants to be denied to people with disabilities only if the disabilities are “medically significant” to the procedure, remains a forgotten orphan today. Despite bipartisan support in the state House and Senate and more than four dozen co-sponsors, the bill has not moved...

Those like the Corby family in Pennsylvania haven’t been as fortunate. Paul was denied a place on the transplant list in 2012 when he was 23. His health continues to deteriorate as he nears the age when his father died of the same condition: 27.

I guess they look at transplanting into the less than 1000% "neurotypical" as a bad investment...


rocktivity

[Warpy]

4. They don't just stuff in a new heart and send you on your way

People who get transplants have to participate in their care. High functioning autistic people who are able to manage their care get transplants. People who are wholly dependent on other people don't.

Physical disability is not a disqualifier. Intellectual and emotional disabilities are.

It's just a shame that this doctor didn't sit down and talk about this stuff for a few minutes, it might have helped this mother understand that she's not going to be around forever to manage the often complex care required to keep a transplant alive.

What we need is a good mechanical implant. When we don't have to rely on a small supply of viable donor organs, more people will qualify for lifesaving surgery.

As it is, a lot of heartbreaking decisions have to be made about who will be capable of caring for a donor heart and who will not.

[KamaAina]

5. Where does it say that Paul is "wholly dependent on other people"?

You might be surprised at how competent some "low-functioning" (whatever that means) Autistic people are. Two of our best bloggers, Amy Sequenzia and Amanda Boggs, are nonverbal.

[Warpy]

8. The line can be a fine one

like the guy I knew at MIT who was a cutting edge physicist but couldn't order his own pizza.

I've seen donor hearts given to people who either couldn't or wouldn't manage them properly. They died a lot harder than they would have with their own hearts.

They evaluated this kid and decided he couldn't manage his own care. His mother can seek a second opinion but she's very likely to hear the same thing. You see discrimination against handicapped people. I see someone who most likely was incapable of participating in complex post op care. I worked in transplant medicine. I know how decisions are made.

There are so few organs available for transplant that the teams want to guarantee as much as possible that they go to people who will follow the complex after care.

And no, I wouldn't be surprised that nonverbal autistics are articulate bloggers when given computers and keyboards. I've seen this before with all sorts of people who are nonverbal for a variety of reasons.

However, this doctor was a putz. "Have a nice day" my flabby old ass.

[KamaAina]

9. So you would deny a transplant to a cutting-edge physicist?

One would hope (and expect) that he would have a personal care assistant to order his pizza and remind him to take his transplant meds.

[Warpy]

12. If he couldn't manage to hang onto it? You bet your ass.

However, it wouldn't be my decision, it would involve a team of physicians, psychologists, and others.

This is why we need a mechanical alternative, and the sooner the better.

[riderinthestorm]

6. Transplants require lifetime vigilance. If a patient can't comply, they won't get the organ

this isn't discrimination.

It's ensuring that valuable organs go to folks who can follow the protocol forever. When Paul's mother dies, is Paul cognizant enough to follow the strict post-transplant guidelines alone?

If not then that's the real answer, not discrimination.

[Warpy]

10. Thank you

It's nice to see someone else get the point.

[riderinthestorm]

11. My sisters coming up on her 5th year post transplant, double kidney/liver

I was with her every step of the way.

Thank you for also making sure DUers know the truth. Too many falsehoods get put out there and discourage potential donors who've been misled about the transplant lists. Stories like this don't help.