We are posting this message via Joseph P. Hillenburg on the Facebook site Heart Transplant Families. Thanks Joseph for bring this to our attention:
Heart parents: There is a proposal being voted on by United Network for Organ Sharing that may affect your child, particularly if he or she is under two years of age and has not yet been transplanted. If your child already has an ABO-incompatible heart transplant, this may interest you as well.
This proposal will give equal priority access for an available heart to any child under the age of one year old, regardless of blood type. Children under two would be eligible for the same if they pass certain criteria regarding antigens. Current rules give priority to ABO-compatible matches, even if they are of a lower status and are a considerable distance away.
For children who have already received an ABO-incompatible transplant: Should a re-transplant ever be required, they are medically capable of receiving a heart of either type, but even the rules that are being voted on do not consider this possibility. The doctor who is responsible for ABO-incompatible transplantation being a reality (Lori J. West) is the same one who proved this concept with respect to retransplantation. My request is that you not only voice your support for the rule changes being voted on, but also request that they consider the retransplantation aspect in the next round of bylaws.
It is currently listed as proposal #5 (“Proposal to Change Pediatric Heart Allocation Policy (Thoracic Organ Transplantation and Pediatric Transplantation Committees)”)