23-year-old denied heart transplant by U Penn hospital because of autism, mom says

In this July 2012 photo released by Karen Corby shows her son Paul at the Pottsville Free Public Library in Pottsville, Pa. Karen Corby whose autistic adult son was denied a heart transplant is using an online petition to gather support in a bid to convince a hospital to reconsider.

/ AP Photo/Courtesy of Corby Family

(CBS News) Karen Corby won't give up on fighting for a heart transplant for her son.

Paul Corby, from Pottsville, Pa., has autism and a mood disorder that causes occasional outbursts. Four years ago, the 23-year-old was also diagnosed with a deadly heart condition called a left ventricular noncompaction that requires a transplant.

The congenital disorder left part of his heart less able to pump blood through his body. After seeking a new heart at the Hospital of the University of Pennsylvania, Karen told CBS Philly that Paul was denied the opportunity to be put on the list in part because of his autism.

She said the doctor wrote to her, "I have recommended against transplant given his psychiatric issues, autism, the complexity of the process, multiple procedures and the unknown and unpredictable effect of steroids on behavior."

"I was devastated," Karen told CBS Philly. "I don't see why anyone would think his life is less worthy of saving."

In a statement to the Associated Press, the University of Pennsylvania Health System said it cannot discuss its patients' cases but noted that "when individuals are referred for transplant consideration at Penn or any other certified transplant center, all aspects of their medical status would be reviewed."

"This includes the current health status and post-transplant prognosis of the recipient, the impact of other existing health problems on the success of the surgery itself and over the longer term, as well as the potential interaction between a patient's existing drug therapies and the drugs that would be necessary to stop transplant rejection," the statement from spokeswoman Susan Phillip said. "Our criteria for listing an individual for transplant are regularly reviewed in comparison with national standards, but we always encourage patients to seek another opinion."

Dr. Arthur Caplan, head of the Division of Medical Ethics at New York University's Langone Medical Center who is not involved with this case, told HealthPop that getting onto a transplant program's waiting list is "very much in the hands of the transplant team," which may include a surgeon, social worker, psychologist and specialist, such as cardiologist.

Besides the patient's health, considerations may include the surgeon or doctor's experience, whether the hospital likes to take on risky cases or financial considerations. A transplant can cost hundreds of thousands of dollars - the procedure itself with follow-up monitoring and treatments - so someone without insurance or who is a non-resident living in the U.S. might be excluded by some hospitals for example, Caplan said.

With disabilities in particular, Caplan said he knows of cases in which people with high-functioning or mild intellectual disabilities have gotten transplants, but someone with a more severe case "would be next to impossible" to transplant. That's because of the constant monitoring required because the procedure is so high-risk: whether it's taking the large amounts of medication to prevent the body from rejecting the transplant or seeking treatment at the first sign of infection.

Such care isn't only needed immediately after the transplant, he said. Patients require a lifetime of monitoring, and the anti-rejection medications even may raise cancer risk.

"A heart transplant is substituting a chronic disease for a terminal disease," Caplan said, "It's no picnic."

As such, rather than work with a patient who may lose a heart, the hospital might go with someone who has a better chance of long-term survival given the nationwide organ shortage.

Karen however told CBS Philly that her son takes almost 20 drugs a day as is without any problems, and his medications thus far have not caused any behavior problems.

The case is similar to an incident in Philadelphia where a New Jersey family's 3-year-old daughter Amelia was denied a kidney transplant because of mental disabilities, a decision went viral online.

Karen has began her own online petition on change.org.

"I want to save his life and that's the only way," Karen told CBS Philly.

Caplan says it is ethically hard to argue that a person like Paul, who seems to be enjoying life and has a strong system of family support, should not be considered for a transplant "and it should be hard." He also however added that he does not second-guess the transplant team's decision.

Caplan said if people are outraged by the case, he has one question: Are you a donor?

"If more people would sign their donor cards and licenses, we'd have more hearts," said Caplan. "All these things get rationed and fought over, so as much as somebody might say 'how can they do this,' the question is, "Did you sign your donor card?"

[hike108]

Healthcare is rationed for everyone. Let's face it: the wealthy or those with better coverage have access to better care. There are not enough donor hearts for those already on the wait list. Most of those on the list will die waiting, or will be implanted with the LVAD. This individual will need daily monitoring for the rest of his life. If his mother (caregiver) dies, he will not be able to manage his own care. This young man will have a very difficult time emotionally, weathering the hospitalizations, illnesses, pain, medications that are part of the transplant journey. It's not a cakewalk, people. Sometimes, it's mercy to let a person die a natural death.

[jw3457]

As two people already said, autistic people do not have a shorter life then anyone else. If being on the transplant list had anything to do with how much longer the person would have to live then why is the cut off age for transplants 65 or 70 years old depending on the hospital. This autistic man if he gets a heart transplant will most likely live a lot longer then someone in their 60s getting a transplant. Doctors are risking the chance of anyone having a heart transplant dying on the operating table. This has nothing to do with this man being autistic.

"Plus he's on 19 medications, Which the Mother declined to mention to the News people"

In this article it says "Karen (who is this man's mother) however told CBS Philly that her son takes almost 20 drugs a day as is without any problems, and his medications thus far have not caused any behavior problems." You may want to read the article before making untrue comments. I am guessing most of these medication are to help his heart condition. I am also guessing some are for other issues but since I do not know this man or this mother I am just guessing on this.

[MrMac59]

Like an alcoholic if they haven't stopped drinking or haven't been sober long enough then they are refused a liver, same as a smoker needing a pair of lungs,
Just give your son the best last days you can, we all die.

[jw3457]

So...being autistic which is someone you are born with is the same as being a alcoholic or a smoker when it comes to needing a transplant? What is this man supposes to do...stop being autistic and then he could be put on the transplant list? Yes we all die but to die due to doctors refusing to put a 23 year old man on the transplant list so he has the chance of getting a new heart in time is not the same as dying of old age or due to an accident. This man does have a chance to live a long life and doctors are refusing to give him this chances.

"Just give your son the best last days you can" If it was your child, parents, sibling, partner or anyone you loved would you just give them the best last day or do whatever you could to trying to save their life?

[jw3457]

which is someone you are born with

Something not someone

[kepdavis]

Nobody is saying his life is less worthy of saying. They are saying he is not a good risk for the procedure due to the fact that he might be less able to cooperate with his treatment and the effects of the gobs of medication he would have to take due to the heart transplant on his behavior and in combination with what he already takes.
This is a tough decision and it is painful to those who love the individual, but there are good reasons.

[Meezermom1951]

Every year thousands are turned away by transplant committees. They make their decisions based on who is most likely to do well and unfortunately $$$$ speaks loudly. I feel for this mother and her son however she needs to understand and accept that there is no legal or moral right to a transplant. The hospital made a decision based on a number of reasons. If they wanted to be "nice" they could put her son on the list but that does not guarantee him a heart! Would she then demand he get the next heart? It simply does not work that way. Until more people step up and become organ donors there will be a terrible shortage of suitable organs and many many people will die who might have had a chance. Life is not fair. One wonders if this mother and the members of her family were donors before or are now. Those who will not give, will not receive for them and theirs. And before anyone gets snippy about it, my sister in law was very lucky and got a transplant, my cousin did not. Life is not fair.

[jw3457]

No where in this article it says that this mother is demanding her son to be on the top of the organ transplant list. She is simply asking for her 23 year old son to be put on the list in hopes he gets the chance of getting a new heart. What mother or father would not fight for their child's life? If this mother was not fighting she would then be called a cold hearted horrible mother. It is human nature to fight for the life of people that we love and I do not get how anyone posting these comments can say anything negative about what this mother doing. People on the transplant list who are the sickest are on the top of the list and you only get a transplant if the organ matches. People on the transplant list die due to not enough organs or the right match. If this guy is going to pass away let him do so because other people were higher on the list or because a heart that matched him was not donated. Do not let him die because doctors will not even put him on the transplant list.

"If they wanted to be "nice" they could put her son on the list but that does not guarantee him a heart! " Yes being put on the transplant list does not guarantee him a new heart but it does give him a chance to get a heart. How is it being "nice" by putting this man on the transplant list? Doctors jobs is to make sick people healthy and to keep people alive. Putting him on the list is not them being nice but just them doing their job. This is not about life being unfair it is about people being unfair. These doctors do not having any kind of understanding of people who are autistic and do not having a heart themselves.

She said the doctor wrote to her, "I have recommended against transplant given his psychiatric issues, autism, the complexity of the process, multiple procedures and the unknown and unpredictable effect of steroids on behavior." Everyone is different. Autistic or not steroids can (and most likely will) effects anyone behavior. These doctors say effects of steroids on this mans behavior is unknown and unpredictable. Not that they know it will have a negative effect on this behavior. The only way to know is to try it. All medical advances are made due to trying procedures that the effects are unknown. Transplants were first done with the outcome being unknowns and they only way to know if they could do organ transplants in humans was to try. For anyone having a heart transplant the process is complicated and they will need multiple procedures. It seems like the only reason the doctors give that does not apply to anyone needing a transplants is that he is autistic.

"And before anyone gets snippy about it, my sister in law was very lucky and got a transplant, my cousin did not." did your cousin not get the transplant they needed due to doctors refusing to put them on the transplant list for a issues they were born with and they could not control or change. For your sister in law, what if the doctors refuse to put her on the transplant list and she was no longer with you due to this.

Inmates have received transplants that the states and tax payers pay for. This man who's only crime is that he was born a little different then most people can not have the same chance to get a new heart to save his life as criminals in prisons. This is just wrong and sick.

http://www.wpri.com/dpp/news/local_news/west_bay/cranston-aci-inmate-receives-organ-transplant

http://www.scu.edu/ethics/publications/submitted/Perry/transplant.html

[audemus]

Can someone explain why doctors and hospitals expect people and families to donate organs, yet very few, if any, donate their time, talents and resources to do the transplants? Aren't they profiting from those "products" ?

[baf827]

How dare you?? I donated a kidney to my sister and the ony one who profited was my sister who gained another 9 yrears of life!!!!!

[lillyhorton]

What she is saying is transplants cost the family thousands of dollars even though the piece was donated. The doctors didn't have to make an artificial piece but the costs seem to reflect it.

[audemus]

Yes...I did sign a donor card, and YES it's perfectly understandable that a mother would fight for the life of her son. When doctors start making decisions about quality of life issues that most likely result in the death of loved ones when such decisions are not accepted by family and not medically necessary, it's plainly wrong. This child should be placed on the list.

[gjc1n1]

If women are going to be forced to carry handicapped children to term by the pro-life zealots, then these same children should be given everything they need to survive a good life.

[CindyLouToo]

I don't understand this comment. You think the pro-life zealots should only force women to carry non-handicapped children to term?

[BloodForceTrauma]

AS I recall, autistic people don't live very long. Plus he's on 19 medications, Which the Mother declined to mention to the News people. As if doctors are going to Risk him dying on the operating table... he'd more likely spend the rest of his life, going in and out of surgery right after healing from the previous one and if he doesn't die during any of the operations who's to say rather he'll live to be 60?
Autism is more than just about them not forming like other people, it's about everything being not formed right.

I guess this mother rather risk him spending the rest of his life in sleep and dying on the operating table... then she'll go and blame the doctors for HER Ignorance! - Ignorance meaning that she ignored their advice AGAINST it. Not to mention she'll probably go on to try and SUE them.

If she really wants to save her son's life, why not give her heart - if she's a match?

He's on 19 medications, like that's also not going to contribute to something failing? - And I believe the doctors and what they said in this article... Because who;s to say that the condition is NOT going to come BACK?

It has nothing to do with discrimination, it has everything to do with the others who are ON that list who need the heart transplant more than him... Considering they won't redevelop the same condition twice and they'll live longer.

One person said on her petition about Donald Trump and that he got a Transplant and that he's "older than pepper" Well he also was NOT on 19 medications.

Not to mention if he has an mood disorder and has an outburst while recovering that could cause the new transplant to go down hill and kill him.
I agree with them about Steroids... I totally agree with these doctors. Because his body could also reject the transplant... and that being because it's a foreign object... It doesn't have his anti-bodies... The anti-bodies in the transplant attack his anti-bodies and the red blood cells do the same... they fight a war until one of them wins.

Instead of SEEKING another opinion she rather make the university of Pennsylvania look like the BAD GUY!
There are still so many people on those transplant lists who've not gotten their transplants and they aren't autistic.
And I totally agree with this quote - "A heart transplant is substituting a chronic disease for a terminal disease." - meaning that it won't cure it and that it could come back.
There is Organ shortage. They aren't going to risk giving a heart to someone who may only live a few moments or a few months or a few years. Autistic people rarely live long.
I also agree with "Caplan said if people are outraged by the case, he has one question: Are you a donor?" "If more people would sign their donor cards and licenses, we'd have more hearts," said Caplan. "All these things get rationed and fought over, so as much as somebody might say 'how can they do this,' the question is, "Did you sign your donor card?"

A lot of people don't donate their organs... part of it is because of toxins in their body and they can't be put on the list. Besides I thought there was something that was creating heart muscle for heart-patient people?

And even if he gets PUT on the list, What's the guarantee that he's going to get the transplant before he dies? - and even if he does get the transplant what's the risk that he's just going to die a while after? -

[imalulu48]

Just because you wrote a lot of words, does not mean that you know anything. This is the most ignorant nonanalysis of this situation I have read so far.

A. Autism is a brain-based condition leaving the person unable to multitask very well. So it can be harder to communicate, do complex motor tasks, or sort out sensory inputs. But everything else is formed just fine. Please do tell where you went to medical school (or any school).
B. Paul's heart defect is Paul's heart defect. That is why he needs a new heart. No doctor said it could reoccur. So why would you? That is a crazy leap of logic that you made which is completely wrong.
C. 19 medications are primarily for his heart condition and I would assume, conditions caused by his heart condition.
D. Autistic people live just as long as the rest of us. And they are frequently very intelligent. Maybe one of them could help you with your grammar and spelling if you ask nicely.
E. There are no guarantees, as you say, and that's life. There most certainly no guarantees, for instance, that people like YOU won't spread lies and make completely irrational statements, but there you go, you've proved that point already (many times over).

[carriedag]

I will clarify one point that you seem compelled to make at least three times that is absolutely false. Left Ventrical non compaction (LVNC) can not "come back". It is a condition that develops during the forming of the fetus In utero. The heart does not completely form correctly so that the walls of the left Ventrical are thicker than they should be and there is extra tissue within the Ventrical. This makes it harder for the heart to pump blood to the body and increases the risk of heart attack. It is a congenital condition that can only be fixed by a fully formed healthy heart being transplanted in its place. There are medications that they can give to help the LVNC effected heart function better but a heart transplant is the only actual remedy to the condition. A fully formed healthy heart can't suddenly develope LVNC.

How do I know? My 10 year old daughter has LVNC.

Oh, and I have no clue what you mean by "as I recall people with autism don't live very long". Please point me to the study or article where you recall reading that.

I support the expression of opinion on any subject but to support that opinion with totally false information deserves a rebuttal. Your prejudice is evident with your conceptual leap of logic that people with autism are not "formed like other people".

[tonymoo1206]

I hope that the hospital has most, if not all, of it's public funding pulled - wouldn't want any tax dollars, especially from autistic taxpayers, going to them.

I also hope that the doctors doctors making this decision are punished either in this life or the next.

Although already probably a violation of equal protection laws, I pray this will spur legislatures to pass explicit laws protecting the different.

To allow a panel to decide that somebody is not worthy of a chance at life is the first step toward a world we should all fear.

Pardon me if I am somewhat incoherent. For the first time in 20+ years of using the internet, I just want to smash things - monitors, keyboards, etc...

Instead, I'm going to go downstairs and hug my autistic son and pray he never gets hurt or sick enough to risk being judged unworthy.

[gnimelf1968]

Give him a hug for me too. Pray that all our children never get sick or hurt.