After an autistic patient was denied a heart transplant at the Hospital of the University of Pennsylvania, his mother started a petition to reverse the decision and place her son on the transplant list.
Paul Corby, Karen Corby’s 23-year-old son, was diagnosed in 2008 with left ventricular noncompaction, a congenital disorder that impairs the left part of his heart which pumps blood through his body. In 2011, Paul was referred to Penn Medicine, but was denied a heart transplant due to “psychiatric issues, autism, the complexity of the process, multiple procedures and the unknown and unpredictable effect of steroids on behavior,” according to a June 2011 letter from his cardiologist at the time.
When Paul was not recommended for a transplant, his mother said she was “stunned — I couldn’t believe that we were in this position, that my son was this sick and no one was going to help him.”
In addition to the support she has received on her online petition — which, as of press time, had nearly 300,000 signatures — Corby said a number of autism organizations, including Autism Connection of Pennsylvania and the Philadelphia chapter of the Autism Society of America, have offered their help.
According to a statement from HUP spokesperson Susan Phillips, the Penn Health System evaluates transplant candidates based on “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 transplant team at Penn is “at a real disadvantage in this case,” said psychiatry professor David Mandell, who is the associate director of the Center for Autism Research at the Children’s Hospital of Philadelphia. “They are not allowed to share their reasoning with the public, only with the family, due to patient confidentiality laws.”
Psychiatry professor Anthony Rostain, who specializes in adult developmental disorders, said that autism should not have been listed as a factor in the transplant denial. He believes, however, that the decision was based on psychiatric issues in the patient’s record “above and beyond autism.”
“If he was being denied because of his developmental disorder, that’s a civil rights issue and clearly would be of concern for everyone,” he said. “But apparently there was more to this case than we were informed about.”
Rostain added that HUP has done two transplants for patients with autism in the past.
“Ultimately, any decision to carry out a transplant is based in part on the medical issues and also on the ability of the patient’s support network to manage the complexity involved in recovering from the procedure,” he said.
According to Mandell, Penn’s transplant policy does not exclude individuals with developmental disabilities. However, he feels it should be made explicit “that they do not make decisions about a candidate’s appropriateness for transplant or any other surgical procedure based solely on the presence of a developmental disability.”
Around 40 percent of people requesting heart transplants are turned down, according to Rostain.
Since she began circulating the petition, other hospitals have begun reaching out to Corby, offering to look at her son’s medical records. Her son’s case also gained additional publicity in an Aug. 14 Philadelphia Inquirer article.
“I can say with 99 percent certainty that we probably won’t be going to [HUP] even if they reversed the decision,” Corby said. “I can’t imagine him getting fair treatment there with all the media coverage.”
Mandell added that while Corby’s petition may cause the transplant team to reevaluate this particular case, “[his] hope is that it will have a more systemic response — that we would think much more broadly about policies that affect the care of individuals with developmental disabilities.”