It all sounds eerily familiar: A special-needs patient is denied a lifesaving organ transplant by a local hospital. People get mad. Petitions are created, circulated, signed. News outlets pick up the story. And then we wait for a response.
If you remember little Amelia Rivera’s ordeal with CHOP earlier this year, you know what I’m talking about. Now it’s happening to a 23-year-old autistic man named Paul Corby, who was denied a heart transplant by the Hospital of the University of Pennsylvania. His mother, Karen, says that after undergoing an evaluation, hospital docs determined that Corby’s “psychiatric issues, autism, the complexity of the process, multiple procedures and the unknown and unpredictable effect of steroids on behavior” meant he wasn’t a good candidate, according to the Philadelphia Inquirer. The family has not been told how long Corby will live without the transplant.
At first, Corby, who suffers from a condition called left ventricular noncompaction, accepted the hospital’s decision. “And then he thought, ‘Why not? Why don’t they like me?’ ” Karen told the Inky. So she started an online petition on change.org to try and get the hospital to change its mind, buoyed by little Amelia’s story, in which CHOP ended up reversing its decision. After being picked up by a few blogs and the Inquirer, the petition now has over 11,200 signatures.
HUP won’t comment on the case, citing privacy issues, but Penn health system spokeswoman Susan Phillips reported that at least one other autistic patient has undergone an organ transplant at the hospital. Transplant candidates are reviewed on a case-by-case basis, and evaluated according to potential outcomes based on their medical history, which in Corby’s case is somewhat complicated. (The Inky goes into lots of detail about it, so I’ll let you read about it over there.)
Karen says her son is high functioning and deserves the transplant as much as anybody else; the 11,000-plus who’ve signed her petition seem to agree. So far, the hospital hasn’t budged on its decision.
But the story raises the same debate we hashed out over Amelia Rivera: Should a person’s disability—or quality of life, or prognosis—come into play when deciding whether or not he or she qualifies for a procedure or treatment? Do stories like this call into question hospitals’ screening processes altogether? Share your thoughts in the comments.
I am concerned that people are sparking off the word “autism” on this and spurring to action without knowing all of the facts.
I do not know all of the facts, either, so I am not jumping in to take sides. I am not, however, sending in a petition yet, because of the following items that were also mentioned about this in the ABC news piece:
(1) The letter denying the transplant named autism as only one of the factors. The others included “his psychiatric issues” (he has an unspecified mood disorder) and “the unpredictable effect of steroids on his behavior”. So, is it solely because of the autism that they are concerned or do the psychiatric factors take precedence?
(2) “Patients denied can seek evaluation for the national waiting list at another transplant center.” This provides a system of checks and balances in case Penn is being biased. This is inciting people and he hasn’t even had a second opinion.
(3) He is not being denied treatment. He is being treated for his heart condition. The hospital is not willing to put his name on the transplant list. Big difference. There are a limited number of hearts out there and we can’t just go manufacturing more. (In fact, numbers go down as people practice safe behaviors like wearing seat belts and helmets, so we have fewer people dying with healthy organs, but I digress.) So, the doctors do have to decide who they think is going to have the best chances of survival if they get a new heart. And there are a LOT of factors that go into that decision. I cannot see them making that decision lightly.
(4) A new heart is not a guarantee of life. Yes, it is a new hope. But some patients don’t go through surgery well. Some don’t do what they’re supposed to in recovery. Some have bodies that reject the transplant. And some become severely depressed when things aren’t going great (remember that mood disorder?). Again, with a finite number of hearts, doctors are going to look at health information and past behavior to make their best predictions on whether or not this person is statistically likely to do well with a heart transplant.
I will state again that I cannot believe that the Penn Medicine doctors made this decision lightly. And I applaud his family for seeking a second opinion.
But I’m not going to jump on that bandwagon about a subject that I do not have all of the facts on and I hope you won’t either.
http://abcnews.go.com/Health/autistic-man-denied-heart-transplant-upenn-hospital/story?id=17006152#.UCwRdI7WZLg
People with autism have a life that is worth living, yet there is a bias that they don’t that I experience every single day in the comments made to me about my son. From what I have heard about the case (and I have read a bit about this and a few other similar cases), I am disturbed enough to go the DMV today and remove the organ donor status from my license. I personally cannot look at my son, knowing that if he needed an organ, his disability would disqualify him. I don’t think they made the decision lightly, however I disagree with autism and psychiatric issues (one in the same with a person with autism) as the only rationale used with the mother. Autism would not preclude effective transplant, medical care or organ rejection. The man is being passed over simply because UPenn thinks that a heart can be better used by someone who does not have an existing disability, that someone another patient will contribute more to society than this man with autism. That’s what I read into all of this. And it isn’t something I can or will support. Unless the system is truly fair in terms of distribution of lifesaving organs, I won’t participate in it personally as a potential donor.