Public policy


Pediatric recipients of solid organ transplants have unique and specific medical, surgical and programmatic needs. The etiology of organ failure in childhood differs substantially from adults. The occurrence of organ failure in childhood has ramifications well beyond the direct effects of the organ failure itself given the detrimental effects of organ failure on growth, development and cognitive performance.

Given the age at transplantation, a child by default will have a longer exposure to immunosuppressive agents compared to adults. The potential adverse consequences of immunosuppression on bone health and growth will have a greater impact on human growth. Clear differences in absorption and metabolism of key immunosuppressive agents have been identified in the infant population. Given the specific needs of a growing child the use of unique immunosuppressive regimens, for example those that minimize or avoid corticosteroid exposure, are warranted.

Depending on the organ transplanted, a child may have a high likelihood of requiring retransplant possibly even in childhood.

Adolescents represent a unique and challenging population with high incidence of graft failure felt to be related to non-adherence and inadequacies related to the transition process. Gaps in insurance coverage, and access to medical care and essential medications, continue to be a significant problem as children with organ transplants transition to adulthood. This group of patients requires a higher degree of programmatic and psychosocial support best provided in a transplant center equipped to understand and address their unique needs. Additionally this cohort of patients may benefit from novel long-acting immunosuppressive agents or tolerance inducing immunosuppressive protocols.

These issues, many of which are unique to the pediatric transplant population require special study. Increased support for both basic science and clinical research is needed to allow children to maximally benefit from organ transplantation. Pediatric patients have much to gain from a successful transplant, including the optimization of growth, neurological and psychological development, the ability to attend school, learn and enter college, and ultimately to become productive citizens as they enter the workplace as adults.

The American Society of Transplantation (AST) has strongly supported past legislative efforts to improve the field of pediatric transplantation, including medical research provisions included in the Children’s Health Act of 2000, 106th Congress, P.L. 106-310, Title XXI, Special Needs of Children Regarding Organ Transplantation and the FDA’s pediatric rule published in the December 2, 1998, Federal Register (63 Fed Reg 66631). This rule, which became effective April 1, 1999, ensures that all medications are tested for safety and efficacy in pediatric patients.

In summary, the AST supports the following initiatives:

  • Support for research that specifically addresses the special needs of children who have undergone organ transplantation, and promoting studies that provide for the successful transition of care into adulthood
  • Guaranteed insurance coverage for all pediatric organ transplant recipients

Approved by the AST Board of Directors on February 15, 2006
Revised and approved by the AST Board of Directors on April 13, 2009
Revised and approved by the AST Board of Directors on September 6, 2011
Revised and approved by the AST Board of Directors on August 12, 2015

Shandie Covington, Executive Director,; 856-316-0924
Bill Applegate, Director of Government Relations,; 202-258-4989