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ASPartOfMe
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05 Mar 2017, 1:43 am

People with autism, intellectual disabilities fight bias in transplants

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When David Magnus, director of the Center for Biomedical Ethics at Stanford University Medical School, surveyed 50 pediatric heart, liver and kidney transplant programs in 2008, he found that 39 percent rarely or never considered neurodevelopmental delays in deciding whether to list someone as eligible, and 43 percent always or usually did. The results also varied depending on whether the disability was moderate, severe or profound and which organ was being transplanted.

“It does appear that the programs use this psychosocial criterion to distinguish among candidates, although consensus does not exist within the field to guide its usage,” the researchers wrote in the journal Pediatric Transplantation.

Some efforts are underway to change that. In October, 30 members of Congress called on the Department of Health and Human Services’ civil rights office to issue instructions that discrimination in organ transplantation violates the Americans With Disabilities Act. They also want the agency to tell transplant teams to account for a disabled person’s support system in deciding whether he or she will be able to stick to a postoperative health-care regimen, which is typically a factor in evaluating patients for a transplant.

Four states have passed laws containing similar restrictions. In Pennsylvania, State Sen. John Sabatina (D) has introduced “Paul’s Law,” an attempt to outlaw discrimination in transplant decisions that is named after Corby. And Halpern suggested in the New England Journal of Medicine last month that regional panels should be established to adjudicate disputes over eligibility for a transplant.


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Tawaki
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06 Mar 2017, 11:55 am

There has always been screening for organs that included how supportive your family/support group is, how much money you have to keep up the medications to stop rejections, do you have the capacity to understand what it takes to keep doing all the things it takes to keep your body from rejecting the organ.

They already don't put kidneys/livers/hearts into people with active substance abuse issues. I forget how many years you have to be "clean" to even be accepted on a trasplant list.

There has always been a finite amount of organs. Of course there is picking and choosing who gets what before you even make the list.

If there is a perfect match for a kidney between two people, who have been on the list on the same amount of time

Person A. Is married with wife, kids, active in his community, owns his own business, is in decent health and practices good life style choices.

Person B. Lives with mother. Unemployed. Never work, but has some college background. On SSI plus Medicaid. Battles with health care providers over treatment plan. Has level I autism. Support system is one parent, no real outside support beside mother.

Who are they are going to give the kidney to?

Usually the disable never make the list because of other comorbids that cancels them out automatically.

I worked in dialysis for a few years. Doctors do pick and chose because they get dinged if the transplant fails.



ASPartOfMe
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06 Mar 2017, 1:02 pm

It should be the co morbids that cancels it out. Autism in and of itself should not be a factor but it is and probably always will be no matter what law is passed.


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06 Mar 2017, 8:57 pm

I have to admit I think discriminating based on mental illness in this situation is justified. I don't think it should be a big part. I think the biggest factor should be health, income, support, life, and importance. I hope that artificial organs become reality.



firemonkey
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06 Mar 2017, 9:48 pm

BettaPonic wrote:
I have to admit I think discriminating based on mental illness in this situation is justified.


Then people wonder why life expectancy for the severely mentally ill is much lower. Lifestyle factors certainly don't help and effects of medication may be a factor too, but professionals who provide lesser treatment for physical problems to the severely mentally ill are yet another factor.

It's time such attitudes changed.



BettaPonic
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07 Mar 2017, 3:26 pm

firemonkey wrote:
BettaPonic wrote:
I have to admit I think discriminating based on mental illness in this situation is justified.


Then people wonder why life expectancy for the severely mentally ill is much lower. Lifestyle factors certainly don't help and effects of medication may be a factor too, but professionals who provide lesser treatment for physical problems to the severely mentally ill are yet another factor.

It's time such attitudes changed.

I am a mentally ill person and I would refuse an organ to myself.



Tawaki
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09 Mar 2017, 12:42 pm

ASPartOfMe wrote:
It should be the co morbids that cancels it out. Autism in and of itself should not be a factor but it is and probably always will be no matter what law is passed.


Problem is autism factors into the psycho/social scoring. You can have some co morbids that aren't necessarily a deal breaker, but toss in autism+no real social supports besides government help is the deal breaker.

If Bill Gates had a kid on the spectrum. Said kid would get the transplant. Family has deep pockets to pay for whatever is needed. Autism factors heavily into the reasons why some of the above is lacking.

The criteria can always be cooked to get the results the doctor is looking for, and I agree that a law won't change that.



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09 Mar 2017, 3:50 pm

i never realized organ donation and recieving was so discriminatory.i always thought it was first come first serve on a waiting list


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Tawaki
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12 Mar 2017, 1:17 pm

vermontsavant wrote:
i never realized organ donation and recieving was so discriminatory.i always thought it was first come first serve on a waiting list


In theory it is the sickest get first dibs.

BUT

There is a a ton of hoops to jump through. After the screens to make sure you aren't too sick not to get an organ, then the messy bits start. For instant, Lung transplant plants are rare. The big deal hoapital in my area only does 20-40 a year. Do you understand what you have to do to keep those transplanted lungs going? Can you get to the doctor's appointments? Able to get prescriptions and afford them? Are you mentally healthy enough to deal with all the hassles and changes? Support systems?

The morality rate is 60% 5 years out. Is it even worth it? Some people say no.

There are only 3 hospitals in my state doing lung transplants. That is maybe 120+ surgeries/year. The waiting list is probably double. Ugly truth is not everyone will get one, and doctors pick for the best out come.

Limited commodities suck.



kraftiekortie
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14 Mar 2017, 1:45 pm

"Discrimination," I feel, is justified for drug abusers and alcoholics. If an alcoholic received a new liver, for example, the liver would become diseased again quite quickly because of the alcoholism.

My brother-in-law was on a transplant list. He was going to receive a new liver. But when he did not do what the transplant team asked him to do, he was taken off the list. He was an alcoholic.

He was admitted to a hospital with his tongue hanging out, unconscious. The tongue never got back inside his mouth. He passed away quite quickly. It was because he was refused a liver because he was irresponsible and an alcoholic.

I have mixed feelings about this.

But to deny a transplant to an autistic person, on the basis of autism alone, is patently ridiculous in my opinion.