AAP: Denying transplants to kids with intellectual, developmental disabilities may be discriminatory
Tuesday, April 28, 2020
The American Academy of Pediatrics (AAP) released a policy statement in April that says physicians who deny organs to children with intellectual and developmental disabilities may be acting in a discriminatory manner.
“Patients should not be excluded from consideration for solid organ transplant solely on the basis of an intellectual or developmental disability,” the guidance states. “When transplant is likely to provide significant health benefits, denying transplant to people with disabilities on the basis of their supposed lower quality of life may constitute illegal and unjustified discrimination.”
The policy statement's authors, Dr. Mindy B. Statter and Dr. Garey Noritz, write that "children without disabilities have no more claims to scarce resources, such as organ transplants, than do children with disabilities."
A 2008 Stanford University survey found that 85% of pediatric transplant centers consider neurodevelopmental status in the eligibility process in at least some cases. The same survey found 62% of centers said eligibility decisions based on disability were made informally rather than through a formal assessment process.
The Americans with Disabilities Act and the Rehabilitation Act each apply to the nation's transplant programs and should prevent healthcare providers from excluding children with disabilities without other legal protections in place.
Even so, parents of children with disabilities have fought for decades to make organs of deceased donors available to their children. Most recently, a Georgia family has spearheaded an effort to create legislation designed to prevent people with disabilities from being denied organ transplants when they are otherwise viable recipients.
“I remember feeling horrified at the thought that if our daughter did need something in the state of Georgia that we possibly could have had to move,” said Erin Nobles, the mother of a toddler who needed heart surgery, and possibly a transplant, to correct a birth defect. Her daughter, Gracie, was born with Down syndrome. Called Gracie's Law, the legislation was introduced in the Georgia House of Representatives in February. Along with preventing discrimination in the medical community, the bill would also prevent insurers from denying organ transplant coverage due to a person's disability.
“I think for most families, that would be a death sentence to their child, because most families cannot just pick up their whole life and move to another state with a critically ill child and wait on their heart transplant,” Nobles said.
A dozen other states have similar laws on their books, including Louisiana, which passed legislation similar to Georgia's in 2019. Many of the changes have come about following high profile cases of people with disabilities being denied transplants.
The AAP policy statement says that multiple factors, along with the child's disability, should be included in any determination of organ recipient status. Parental input and the opinions of therapists, developmental specialists who specialize in the evaluation and management of those with disabilities should be considered. To avoid discrimination, transplant programs should standardize assessment processes for people with developmental disabilities and "factor each person’s cognitive and adaptive skills."
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