(CBS News) Karen Corby won't give up on fighting for a heart transplant for her son.
Paul Corby, from Pottsville, Pa., has autism and a mood disorder that causes occasional outbursts. Four years ago, the 23-year-old was also diagnosed with a deadly heart condition called a left ventricular noncompaction that requires a transplant.
The congenital disorder left part of his heart less able to pump blood through his body. After seeking a new heart at the Hospital of the University of Pennsylvania, Karen told CBS Philly that Paul was denied the opportunity to be put on the list in part because of his autism.
She said the doctor wrote to her, "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 behavior."
"I was devastated," Karen told CBS Philly. "I don't see why anyone would think his life is less worthy of saving."
In a statement to the Associated Press, the University of Pennsylvania Health System said it cannot discuss its patients' cases but noted that "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," the statement from spokeswoman Susan Phillip said. "Our criteria for listing an individual for transplant are regularly reviewed in comparison with national standards, but we always encourage patients to seek another opinion."
Dr. Arthur Caplan, head of the Division of Medical Ethics at New York University's Langone Medical Center who is not involved with this case, told HealthPop that getting onto a transplant program's waiting list is "very much in the hands of the transplant team," which may include a surgeon, social worker, psychologist and specialist, such as cardiologist.
Besides the patient's health, considerations may include the surgeon or doctor's experience, whether the hospital likes to take on risky cases or financial considerations. A transplant can cost hundreds of thousands of dollars - the procedure itself with follow-up monitoring and treatments - so someone without insurance or who is a non-resident living in the U.S. might be excluded by some hospitals for example, Caplan said.
With disabilities in particular, Caplan said he knows of cases in which people with high-functioning or mild intellectual disabilities have gotten transplants, but someone with a more severe case "would be next to impossible" to transplant. That's because of the constant monitoring required because the procedure is so high-risk: whether it's taking the large amounts of medication to prevent the body from rejecting the transplant or seeking treatment at the first sign of infection.
Such care isn't only needed immediately after the transplant, he said. Patients require a lifetime of monitoring, and the anti-rejection medications even may raise cancer risk.
"A heart transplant is substituting a chronic disease for a terminal disease," Caplan said, "It's no picnic."
As such, rather than work with a patient who may lose a heart, the hospital might go with someone who has a better chance of long-term survival given the nationwide organ shortage.
Karen however told CBS Philly that her son takes almost 20 drugs a day as is without any problems, and his medications thus far have not caused any behavior problems.
The case is similar to an incident in Philadelphia where a New Jersey family's 3-year-old daughter Amelia was denied a kidney transplant because of mental disabilities, a decision went viral online.
Karen has began her own online petition on change.org.
"I want to save his life and that's the only way," Karen told CBS Philly.
Caplan says it is ethically hard to argue that a person like Paul, who seems to be enjoying life and has a strong system of family support, should not be considered for a transplant "and it should be hard." He also however added that he does not second-guess the transplant team's decision.
Caplan said if people are outraged by the case, he has one question: Are you a donor?
"If more people would sign their donor cards and licenses, we'd have more hearts," said Caplan. "All these things get rationed and fought over, so as much as somebody might say 'how can they do this,' the question is, "Did you sign your donor card?"