Developmentally Disabled Kids Should Also Be Considered for Organ Transplant, Pediatricians Say

By Carolyn Crist

April 30, 2020

NEW YORK (Reuters Health) - Children with intellectual and developmental disabilities should not be excluded from organ-transplant lists and should be referred for evaluation as recipients, according to a new policy statement from the American Academy of Pediatrics.

Those with intellectual and development disabilities have historically been excluded from transplant lists as potential recipients, which could be "illegal and unjustified discrimination," the authors write in Pediatrics.

"The demand for transplant organs far exceeds the supply of donor organs, and as a result, hospital transplant programs carefully evaluate all patients in need of organs to ensure the surgery will be successful," said co-author Dr. Mindy Statter of the Children's Hospital at Montefiore in New York City.

"Children with intellectual and developmental disabilities have been perceived to have a lower quality of life, and this has been cited as a one reason to deny transplants," she told Reuters Health by email. "A child with an IDD can be an organ donor. It would be unfair to categorically exclude them as recipients."

Dr. Statter and Dr. Garey Noritz of the Ohio State University and Nationwide Children's Hospital wrote the policy statement on behalf of the American Academy of Pediatrics Committee on Bioethics and its Council on Children on Children with Disabilities.

Patient selection criteria are determined by individual transplant problems, they note, and organs are given to those who are calculated to "experience maximal benefit."

According to a previous study of major pediatric transplant centers, 39% of programs said they "rarely" or "never" consider disabilities in the listing process, while 43% percent of programs said they "usually" or "always" do. Heart programs tend to consider brain-development status more often, the study indicated, as compared to liver and kidney programs.

The International Society for Heart and Lung Transplantation mentions "mental retardation" as a potential contraindication for heart transplant. At the same time, the Americans with Disabilities Act prohibits disability-based discrimination by doctors' offices, state-run hospitals and recipients of federal funding, such as healthcare systems with Medicaid or Medicare funding, the authors write.

"Children without disabilities have no more claim to organ transplants than do children with disabilities," Dr. Statter said.

Drs. Statter and Noritz emphasized the importance of a transparent, family-centered approach during the transplant referral and evaluation process. Transplant policies typically exclude those who have diseases that are expected to recur or that could become worse due to the immunosuppression needed after the transplant process. Transplant programs tend to agree that "social worth or value" shouldn't be considered.

"Care must be taken to ensure that medical and psychosocial factors that may affect the transplant outcome are not confused with judgments of an individual's social worth," the authors write.

Transplant teams should educate families about the benefits, risks and potential harms of organ transplants and make decisions together, they add, and the discussions should include information about physical, psychological and social health. Families may decide, for instance, that their children may or may not receive benefit from an organ transplant for various reasons.

Ultimately, they write, transplant centers should have a framework to assess the medical and psychosocial factors that affect transplant outcomes. In addition, a transplant-listing advisory committee could ensure that transplant selection criteria are fair and nondiscriminatory and that patients receive fair evaluations.

"We, as physicians, must continue to advocate for individuals that need an organ transplant, especially those that cannot advocate for themselves," said Dr. Ashton Chen of Wake Forest School of Medicine, in Winston-Salem, North Carolina, who was not connected to the new report. Dr. Chen is the director of pediatric transplantation and has researched intellectual disability and transplantation.

"We have an opportunity to collaborate and partner with one another to ensure equal access to this life-enhancing and life-saving treatment for all individuals, including those with [intellectual and development disabilities," she told Reuters Health by email.

SOURCE: Pediatrics, online April 20, 2020.