Paul Corby is a 23 year old man who has Left Ventricular Noncompaction which is a heart condition that makes the organ less able to pump blood throughout his body. His ejection fraction of his heart is reportedly 20%, which is far lower than it should be. His disease generally leads to heart failure and strokes. He has suffered from three mini-strokes to date. He is on nineteen medications to keep his disease at bay, but it won’t cure it. The one thing that will save him is a heart transplant. As many of you know, my father was on a heart transplant list a year ago. Organ transplantation is a subject that is near and dear to me, but that it is not the reason I am writing this.
Paul Corby was denied a place on the transplant list at PennMedicine in large part because he has autism, more specifically, he has Pervasive Development Disorder- Not Otherwise Specified. The very same form of autism my two children have.
Let’s talk briefly about the heart transplant decision making process that my father went through in order to be placed on the waiting list. The rules can be different for each facility. For example, some do transplants on patients over 70 and others do not. My dad’s transplant team met to review not only if a transplant would help his heart condition, but they evaluated his overall medical, dental and emotional health. They also determined whether or not he had the financial resources and family support to see him through the transplant procedure and post-transplant care. Based on the evaluation of a lot of factors, my dad was placed on that list.
Paul Corby wasn’t so fortunate. According to the letter from the transplant physician at PennMedicine, Susan Brozena: “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 his behavior.”
Let’s take each issue the transplant physician made in that letter:
1. Psychiatric issues. According to published reports, Paul takes mood stabilizer medication. Anxiety, obsessive compulsive disorder, ADHD and depression are all common psychiatric issues individuals on the spectrum also have. Additionally, autism itself is often viewed as a psychiatric condition and is placed in the mental health section of medical coding (ICD-9).
2. Autism. Paul is diagnosed with PDD-NOS which is this big catch-all for spectrum individuals who don’t fit into nice neat autism categories. Generally it involves social impairments and communication difficulties – especially not being able to read non-verbal communication. Being able to communicate is an important transplant consideration.
Given that Paul’s communication skills are high-functioning enough to self-publish a book, he should be able to communicate with his transplant team about how he is feeling. Transplant patients also need to be participants in their rehabilitation. As Paul already manages his nineteen prescription medications, he appears to be on the right track for that as well.
3. Complexity of the process and multiple procedures. Yep. Transplants are complicated and have multiple steps like biopsies and other medical procedures. Since this would be same for him as any other transplant patient, I am unsure why this is used to exclude him. Post-transplant care is complicated, but it appears that his family is willing and able to support him through that care.
4. Unknown and unpredictable effect of steroids on his behavior. Paul apparently has difficulty managing his anger, another common issue with autism. Steroids often magnify a person’s anger and volatility. ‘Roid rage’ happens to individuals off the spectrum as well. My neurotypical daughter was an absolute volatile wreck while on a steroid for some wheezing. Paul’s psychiatrist reportedly is confident he can manage the increase in anger with medication. Additionally, there are a host of other medication options available to transplant recipients who do not respond well to steroids.
Transplant teams have been charged with determining who is worth saving, and who isn’t, on a daily basis. I don’t envy their task. They rule out transplants for those who are too old, too sick, have other complicated medical conditions, active drug users, alcoholics, smokers, do not have enough financial or family support, and those with serious psychiatric disorders. Are we ‘wasting’ medical services on a person who is socially awkward, geeky and quirky? Are those atypical behaviors worthy of what is essentially a death sentence? This is worthy of public discussion because it is the public who is providing the organs for transplantation.
Individuals with autism are misunderstood because they do not view and interact with the world in a typical way. It is as though they speak a different language and come from a different culture than the rest of us. I spent years learning my children’s language and helping translate it for others, until they were able to do it, more or less, themselves. I find it horrifying that Paul’s transplant team did not attempt to learn this different “culture.” I find it horrifying for Paul as well as the millions in the US who have autism who may need care like Paul does. When I think that a 70+ year old Dick Cheney is deemed more worthy than Paul, my blood boils.
There are no guaranteed outcomes with heart transplants and the road to back to health can be long and full of twists and turns. Some transplant recipients die on the table, others reject the organ and others do not follow the lifestyle changes that are required. Others go on to be full, productive members of society. But in order to have a shot at life, Paul Corby needs to get on the transplant list. As Jon Dobrer wrote: “I hope that hospital finds that it, in the end, has a heart. And I mean this in both senses.”
I hope you will join me and sign the petition to support Paul Corby to be given a chance at life.
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