Much of the coverage devoted to Paul Corby’s quest to get a heart transplant has focused on the cardiac and transplant side of things. But Paul, of Pottsville, Pa. hasn’t been denied placement on the heart transplant list for cardiac reasons.
Paul has been denied placement on the heart transplant list, at least in part, because he has autism.
Paul, who has a rare congenital heart disorder called Left Ventricular Noncompaction (LVN), has had three mini-strokes already. He’s 23 years old. His father died of a stroke, caused by the same disease, at age 27. Penn Medicine at Radnor, part of the Hospital of the University of Pennsylvania, denied Paul placement on the heart transplant list in part because Paul is autistic.
A letter from a Penn Medicine transplant doctor to Paul’s mother Karen Corby reads, “I have recommended against a transplant given his psychiatric issues, autism, the complexity of the process, multiple procedures and the unknown and unpredictable effect of steroids on behavior.”
Penn Medicine initially declined to comment on the story when I first contacted them. Today, however, they answered some questions by email.
When asked if Penn Medicine has ever performed a transplant on a patient with autism or a cognitive disability, Susan Phillips, SVP, Public Affairs at Penn Medicine, responded, “Yes. We have performed heart transplants on two patients with autism.”
“Cognitive disabilities (including autism), in and of themselves, do not disqualify a person from receiving a transplant,” said Phillips. “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.”
So why did Penn Medicine list autism in its denial letter?
I spoke with internationally-renowned autism and behavior expert Dr. Catherine Lord about the concerns that might surround transplants and anti-rejection steroid therapy for people with autism. Dr. Lord, the Director of The Center for Autism and the Developing Brain at New York-Presbyterian Hospital, specializes in diagnosis, social and communication development, and intervention in Autism Spectrum Disorders (ASD).
“Ethically, people with autism should have access to any medical care that other people have. The question here isn’t should we do this, it’s how do we do this?”
“Ethically, people with autism should have access to any medical care that other people have,” said Dr. Lord. “The question here isn’t should we do this, it’s how do we do this?”
“While it seems complicated to think of a person with an Autism Spectrum Disorder (ASD) on a complex medical regime, the reality is that most people with ASD, at least in the U.S., do end up taking medication. It isn’t that they can’t take medication, it’s that there needs to be care in terms of medical follow-up.”
Dr. Lord said that follow-up care for a person with autism should be similar to an Individualized Education Plan (IEP) in schools, in the sense of having a plan.
“You want to have a master plan, that includes not just what the person needs, but who is going to provide it,” said Dr. Lord. “It might be more detailed and more complicated for someone with ASD, but it’s still similar to a plan you would give for, say, an elderly person who goes home from medical treatment. There needs to be a plan so that things don’t fall through the cracks.”
Dr. Lord emphasized that there are ways to help individuals with autism cope with the stresses of medical procedures — even ones as complex as transplants.
“That plan needs to cover not just what drugs the patient is taking, but monitoring the effects of the drugs, and monitoring the emotional process of a transplant,” said Dr. Lord. “Can you give the patient a way to express himself? Can you give him as many choices as possible, so that he’s a part of the process? Steps like that could also greatly reduce anxiety.”
One of the concerns expressed in Penn Medicine’s letter is the “unknown and unpredictable effects of steroid on behavior.” Karen Corby has told me that her son has had issues coping with his emotions (which is fairly common in people with autism), and struggles with anger, anxiety, and depression — all of which have been exacerbated during this medical ordeal. I asked Dr. Lord what can be done to mediate the behavioral effects of steroids.
“I would take seriously the fact that this young man is angry, but I wouldn’t say not to give him steroids,” said Dr. Lord. “I would ask what we can to do to monitor him, and help him deal with his anger.”
“Transplants are very serious medical procedures,” said Dr. Lord. “Many people end up on anti-anxiety medications and sleep medications. There’s an emotional reaction to the pain and uncertainty. I don’t think that would be very different for someone with autism.”
“For a while, doctors tried to treat young people with autism with the steroid prednisone, with the idea that it might slow down the regression. It didn’t work, and there were lots of side effects, but I never heard of anyone become aggressive. I wouldn’t see that as a reason not to do this.”
Dr. Lord has, during her career, consulted to pediatric in-patient programs on working with autistic patients. “You figure out what they understand and what’s bothering them,” she said. “And then you figure out what would make the hospital stay easier for them, first, and then second for everyone who will work with them.”
The issue of coordinating medical care for adults on the spectrum is a pressing issue, said Dr. Lord.
“The most well-identified population of people with autism are still children,” said Dr. Lord. “But that group will, of course, get older and need access to medical care.”
One of the things Dr. Lord is working on at The Center for Autism and the Developing Brain is helping primary care physicians to provide better medical care by coordinating care for adults with autism, especially adults with autism who don’t have parents supervising their medical care.
“For children, most people have a pediatrician who acts as a medical ‘home,’ and parents who are involved. For adults, there is a real need for a general physician or nurse practitioner to be the medical coordinator, to coordinate all the complexities.”
“It would be cost-efficient in the long run,” noted Dr. Lord, “because it would save repeated trips to the doctor, or people getting ill when they didn’t need to.”
“It’s a general societal issue,” said Dr. Lord. “We need to focus on coordinating medical and community services.”
Paul Corby’s psychiatrist, Dr. Andrew Newton, does not feel that Paul’s autism and psychiatric issues should be a barrier to transplant. Mrs. Corby shared with me a letter that Dr. Newton wrote to Paul’s cardiologist:
“Paul is very much aware of the severity of his medical condition and this has been playing on his mind. Nonetheless he continues to hold himself well.
“Recently I was told by his mother that his cardiac condition continues to worsen, and that he is being considered for heart transplant. From the psychiatric point of view there is no clinical reason why he would not benefit from cardiac transplant. Furthermore, Paul is well supported by his mother and uncles who dearly care for this sick young man. He will be well supported by his extensive family if he can be approved for cardiac transplant.
“I therefore recommend him without any reservations for heart transplant, all other parameters being stable.”
If Penn Medicine doesn’t consider autism, in and of itself, to be a disqualifying factor in transplant decisions, it’s still not clear to me why it was listed on the denial letter. I have the utmost respect for the entire health system of the Hospital of the University of Pennsylvania. I delivered all four of my babies in one of their hospitals; I am a Penn Medicine patient and have never received anything less than top-notch care.
I think that’s part of why this is all so disappointing and disturbing to me. The Hospital of the University of Pennsylvania is a nationally-ranked hospital, and U.S. News and World Report ranks it as the best in the Philadelphia region. Frankly, I expect better. I expect a hospital like that to not walk away from a patient like Paul Corby. I expect them to rise to the challenge and create a plan that supports Paul, and individuals like him with autism or cognitive disabilities, to be able to receive the same medical care as everyone else.
The Children’s Hospital of Philadelphia, facing a similar situation with a cognitively impaired girl named Amelia Rivera, ultimately changed its policies in how it works with families of disabled patients who need transplants. It is my hope that CHOP’s next-door neighbor, the Hospital of the University of Pennsylvania, will do the same.
Joslyn Gray is the mother of four children, two of whom have Autism Spectrum Disorders. Read more from Joslyn at Babble Pets and at her blog, stark. raving. mad. mommy. You can also follow her on Facebook and Twitter.
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