The case of a young Pottsville man seeking a heart transplant has prompted some state leaders to seek a change in the law to stop what they view as a discriminatory practice by doctors.
Paul Corby, 24, was diagnosed with autism as a teenager. A few years later, he received another diagnosis of a rare, genetic heart condition called left ventricular noncompaction.
“His cardiologist said there was no cure. There was no surgery. The only thing was a transplant,” said Karen Corby, Paul’s mother.
According to the Cardiomyopathy Association, “left ventricular noncompaction cardiomyopathy is a heart muscle condition in which the muscular wall of the main pumping chamber of the heart (the left ventricle) appears to be spongy and “non-compacted”, consisting of a meshwork of numerous muscle bands called trabeculations.”
So, the Corbys began the process of trying to get on the waiting list for a transplant. Karen says they began by seeing doctors at Penn Medicine at Radnor. In a letter dated June 13, 2011, Dr. Susan Brozena explained the decision not to recommend a transplant for Paul, citing psychiatric issues, autism and “the unknown and unpredictable effect of steroids on behavior.”
“They don’t realize how smart he is,” said Karen. “They don’t think he would take his pills or take care of himself, but he’s very regimented and has a schedule. And, he sticks to it.”
The Corbys sought a second opinion from the Mayo Clinic in Minnesota.
In a letter dated Oct. 15, 2012, Dr. Richard Rodeheffer wrote, “In our judgment, we think that his quality of life would be better served with medical therapy than a transplant and that his survival would be similar with either. There was also concern about his ability to manage the inevitable stresses and untoward events that transplant patients have to deal with.”
Karen said she believes doctors are unfairly using Paul’s autism as the main reason to deny him a transplant.
“The thought of him having a heart transplant is scary enough, but having to fight to have somebody to do it is even scarier,” said Karen.
She hasn’t sought additional medical opinions. “We haven’t gone anywhere else because I don’t think Paul could handle another rejection,” said Karen.
She started a petition on change.org (which can be viewed here) that has garnered over 290,000 signatures.
Her plea for help now has the attention of state lawmakers in Harrisburg.
“My goal is to get him on that list and get other people with disabilities on that list, so that they have a fair shot,” said Rep. John Sabatina (D-174th).
He’s sponsored a bill (Organ Donation Bill Sabatina) that would bar doctors in Pennsylvania from denying a transplant solely on the basis of intellectual or developmental disabilities. It also calls on doctors to further delve into a patient’s home life to gauge what level of support the patient has for handling post-operative care.
His bill is modeled on legislation that passed in New Jersey last year and in California in the 90s.
“Although doctors do have the last say because they are medical professionals, and I respect that, I believe that they should really go above and beyond their normal procedures when dealing with someone with an intellectual or physical disability,” said Sabatina.
Penn Medicine declined to comment on the bill.
There are over 121,000 on the waiting list for a variety of organs, according to the United Network for Organ Sharing (UNOS). More than 99,000 of those people need kidneys, while just over 3,000 are waiting for heart transplants.
“We have more demand than supply,” said Dr. John Crites, an expert in research ethics at Penn State’s College of Medicine in Hershey. Penn State has not been involved in Paul’s case.
Crites said the shortage of available organs has created the structure doctors use to determine which patients are viable candidates for transplants.
“Doctors are making a very hard decision based on what they think will be the best plan for a good outcome, and that includes how well a person would be able to follow up with care needed after the transplant,” said Crites.
Crites said while the proposed changes to state law may help, he pointed out those protections should be covered already under the Americans with Disabilities Act.
“There’s no one factor here that sways the tide, and I think that’s something that people really have to understand,” said Crites. “Laws are often the last place that we go to help for guidance in these kinds of complex decisions, and I fear a little bit that state legislation may try to push it to be the first place that we turn when we’re making these kinds of decisions.”
Even if Paul gets on the waiting list, he and his mom recognize he still may never get the heart he needs. Every year the gap widens between the number of people needing organs and the number of donors, according to UNOS.
“We don’t expect to be number one on the list. We just want to be listed,” said Karen.
For more information on becoming an organ donor, click here.