AAP: Children with disabilities should not be excluded from transplant pool
Children with intellectual and developmental disabilities should not be excluded from receiving solid organ transplants, the AAP said in a new policy statement.
According to the statement, “children with intellectual and developmental disabilities have historically been excluded as potential recipients of organ transplants,” which “may constitute illegal and unjustified discrimination.”
The statement was written by Mindy B. Statter, MD, MBE, pediatric surgeon at The Children’s Hospital at Montefiore in Bronx, New York, and Garey H. Noritz, MD, a pediatrician at Nationwide Children’s Hospital in Columbus, Ohio.
“It’s an ethical issue because organs are a scarce resource and the demand supersedes the supply and you want to ensure that the surgery is going to be successful both for the patient and for the organ,” Statter told Healio. “It's important that people with disabilities be included and evaluated for the transplants just like children who don’t have intellectual developmental disabilities.”
Recommendations in the policy statement include:
- Patients should not be excluded from consideration for solid organ transplant solely on the basis of an intellectual or developmental disability.
- Transplant programs should standardize the definition and assessment of intellectual disability so that transplant decisions can be individualized, equitable and transparent.
- The transplant evaluation is a collaborative process that should occur in-person rather than by medical record review and should include caregivers such as therapists and developmental specialists who can illustrate the patient’s degree of function.
According to the policy statement, individuals with disabilities rate their own quality of life higher than their families or physicians do. This has been referred to as a “disability paradox,” which means that individuals with disabilities base their own quality of life on things far beyond their mental capacity, whereas “proxy reporters” focus solely on the disability.
“I think the most important point is that we cannot make the presumption that children with intellectual or developmental disabilities be excluded as candidates for solid organ transplant because [of] the assumption that they will have poor graft survival or poor patient survival,” Statter said. “That’s not held up in the literature, and you can't think that they have a lesser quality of life or they have less value as individuals.”– by Ken Downey Jr.
Disclosures: The authors report no relevant financial disclosures.