In The Politics of Autism, I discuss the civil rights of people with autism and other disabilities.
Lenny Bernstein reports at The Washington Post:
When David Magnus, director of the Center for Biomedical Ethics at Stanford University Medical School, surveyed 50 pediatric heart, liver and kidney transplant programs in 2008, he found that 39 percent rarely or never considered neurodevelopmental delays in deciding whether to list someone as eligible, and 43 percent always or usually did. The results also varied depending on whether the disability was moderate, severe or profound and which organ was being transplanted.
“It does appear that the programs use this psychosocial criterion to distinguish among candidates, although consensus does not exist within the field to guide its usage,” the researchers wrote in the journal Pediatric Transplantation.
Some efforts are underway to change that. In October, 30 members of Congress called on the Department of Health and Human Services’ civil rights office to issue instructions that discrimination in organ transplantation violates the Americans With Disabilities Act. They also want the agency to tell transplant teams to account for a disabled person’s support system in deciding whether he or she will be able to stick to a postoperative health-care regimen, which is typically a factor in evaluating patients for a transplant.
An HHS spokesperson said in a statement that the agency is working “to clarify the obligations of covered entities participating in the transplant process and to provide equal access to their programs to individuals with disabilities.”
Four states have passed laws containing similar restrictions. In Pennsylvania, State Sen. John Sabatina (D) has introduced “Paul’s Law,” an attempt to outlaw discrimination in transplant decisions that is named after Corby. And Halpern suggested in the New England Journal of Medicine last month that regional panels should be established to adjudicate disputes over eligibility for a transplant.