News and Knowledge

Paul Corby, 27, requires a heart transplant for a rare genetic disease. Corby is also on the autism spectrum and has a number of psychological conditions, for which he takes 19 different medications. After applying for the University of Pennsylvania’s transplant program, he was turned down. The program cited “psychiatric issues, autism, the complexity of the process…and the unknown and unpredictable effect of steroids on behavior” as the reason, as quoted in a “Washington Post” article.

Several states, including California, Maryland, and New Jersey have passed laws prohibiting organ transplant discrimination, but most transplant programs are allowed to consider neurocognitive disabilities in making their decisions. The Americans with Disabilities Act provides some protections, but does not explicitly cover medical transplants. Pennsylvania State Senator John Sabatina introduced “Paul’s Law,” named for Corby, as an effort to prohibit discriminatory transplant decisions.

Scott Halpern, an ethicist at the University of Pennsylvania medical center, told the Post that “the current system lacks the accountability that we might wish it to have. There are virtually no checks and balances on the decisions that transplant centers make.”

Though Corby’s case has brought transplant discrimination to the public eye, it is not a new issue. The Autistic Self Advocacy Network (ASAN) released a toolkit for state advocates working to end discrimination in organ transplants against people with disabilities, following their 2013 report on the issue.

Without regulations, personal bias and preconceptions can play a role in life-or-death decisions, according to Samantha Crane, director of public policy for ASAN. Crane told the Post that many transplant teams have “been steeped in a very medicalized view of disability, in which they see people with disability having a lower quality of life.” 

In October of 2016, 30 Republican and Democrat members of the U.S. House of Representatives submitted a letter to the Department of Health and Human Services requesting that the Department provide guidance regarding organ transplant decisions with respect to the Americans with Disabilities Act. They want to outlaw discrimination against qualified transplant candidates, and they also wish to require transplant teams to consider a patient’s support system when making decisions. To date, the Department of Health and Human Services has not issued any guidance regarding transplant discrimination, but the lawmakers maintain that “no one should be denied their right to life simply because of their intellectual and/or development disabilities.”