Today, the American Academy of Pediatrics (AAP) has released its first policy statement addressing children with intellectual and developmental disabilities as organ transplantation recipients.
The policy statement, published online today in Pediatrics, recommends that transplant teams consider both the cognitive and adaptive skills of a patient when determining if a transplant could be of benefit, and recognize that children without disabilities are no more deserving of organ transplants than children with disabilities. The policy states that it is unethical to deny organ transplants to individuals with disabilities and may constitute illegal and unjustified discrimination.
Often, children with intellectual and developmental disabilities are not considered for organ transplants. A perceived lower quality of life compared to peers without disabilities is frequently cited as a reason for denial. Because children with disabilities can be organ donors, the policy states it would be unfair to exclude that patient population as recipients of organ transplants.
“An individual’s quality of life is unique and multifaceted, and it is known that those with disabilities rate their own quality of life similarly to their peers without disabilities,” said Garey H. Noritz, MD, section and division chief of the Complex Care Program at Nationwide Children’s Hospital and co-author of the policy statement. “This also applies to patients post-transplant: recipients with disabilities have reported improved quality of life, despite the potential challenges that surgery, immunosuppression and other therapies pose.”
According to the policy statement, AAP recommendations include:
- Patients should not be excluded from consideration for solid organ transplant solely based on an intellectual or developmental disability. Delaying transplantation to individuals with disabilities on the basis of a perceived lower quality of life may constitute discrimination.
- Transplantation programs should standardize the definition and assessment of intellectual disability so transplant decisions can be individualized, equitable and transparent. Transplant teams should consider both the cognitive and adaptive skills of the individual.
- Transplant evaluations are collaborative, should occur in person, and should include caregivers such as therapists and developmental specialists who can describe the patient’s degree of function. Evaluations for transplantation to an individual with a disability should include professionals with expertise in the evaluation and management of individuals with disabilities.
“This statement is extremely important, as exclusion of these children from transplant consideration needs to end,” said Dr. Noritz. “Individuals with disabilities are just as deserving of any life-saving treatment as those without disabilities, and organ transplants are no exception.”