Pediatricians Warned Against Denying Organ Transplants To Kids With Disabilities
The nation’s pediatricians are being told that refusing organ transplants for children with intellectual and developmental disabilities may be discriminatory and even illegal.
In a policy statement released Monday, the American Academy of Pediatrics is calling out uneven practices across the country for evaluating kids with disabilities for transplants and urging doctors to make fair assessments.
“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.”
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When considering potential transplant recipients, physicians should factor whether the organ and the patient will survive, the guidance indicates. Research has found no difference in survival rates between children with and without developmental disabilities.
Nonetheless, the pediatrics group notes that 43 percent of major pediatric transplant centers “always” or “usually” consider the presence of intellectual or developmental disabilities as criteria for transplants.
Both the Americans with Disabilities Act and the Rehabilitation Act, which apply to transplant programs nationwide, bar doctors from discriminating against those with disabilities. What’s more, the policy statement indicates that it is unethical to disqualify children with disabilities from receiving transplants since they are allowed to be organ donors.
“Children without disabilities have no more claims to scarce resources, such as organ transplants, than do children with disabilities,” the pediatrics’ group states.
At the same time, however, the guidance says that does not mean that the particulars of a child’s disability should be altogether ignored in making transplant decisions.
“It is ethically permissible for some families to decide that because of the degree of IDD, their children may not attain enough benefit to warrant the immediate and lifelong burdens of transplant,” reads the guidance.
The recommendations indicate that transplant decisions related to children with intellectual and developmental disabilities should include input from therapists and developmental specialists who can speak to the child’s functioning abilities as well as experts in the evaluation and management of those with disabilities. The policy statement advises transplant programs to standardize their assessment process for people with developmental disabilities and to factor each person’s cognitive and adaptive skills.
In recent years, there have been a handful of high-profile examples of individuals allegedly being denied needed organ transplants because of their disabilities.
In 2012, a 3-year-old with intellectual disability was denied a kidney transplant, but doctors changed their minds in the face of public outrage. Later that same year, the family of a man with autism said his diagnosis was cited when he was turned down for a heart transplant. And just last year, the U.S. Department of Health and Human Services’ Office for Civil Rights said it reached a resolution with the University of North Carolina Health Care system after a doctor allegedly decided that an individual with intellectual disability would not be a good candidate for a heart transplant because of their disabilities and the fact that the person did not live independently.
Several states have passed laws prohibiting people from being kept off of organ transplant waiting lists because of their disabilities.