Pediatric Transplantation Committee Regional Meeting Update Fall 2012

Ongoing Committee Initiatives Thoracic Working Group Finalizing recommendations to modify pediatric heart allocation Spring 2013 Public Comment Cycle Working with the Heart Subcommittee of the Thoracic Committee The Pediatric Committee’s Thoracic Working Group and the Thoracic Committee’s Heart Subcommittee have been working together to analyze pediatric heart allocation policy for possible improvements. They are finalizing proposal language and anticipate distributing it for public comment in the spring.

Ongoing Committee Initiatives Pediatric Heart Proposal Will Address Heart Status 1A and Status 1B listing criteria Criteria to qualify for an ABO-incompatible heart transplant Allocation priority of qualified ABO- incompatible heart candidates In utero listings The policy proposal will include: Modifications to the Pediatric Heart Status 1A and Status 1B listing criteria Modifications to the criteria to qualify for ABO-incompatible heart transplant Modifications to the allocation priority of qualified ABO-incompatible heart candidates and The elimination of in utero listings Note: If there are specific questions about details- below are the changes that will be proposed: Pediatric Status 1A Heart Criteria (a)Requires assistance with a ventilator; (b)Requires assistance with a mechanical circulatory support device; (c)Requires assistance with an intra-aortic balloon pump; (d)Has ductal dependent pulmonary or systemic circulation with ductal patency maintained by stent or prostaglandin infusion; (new) (e)Has a congenital heart disease diagnosis (excluding minor lesions such as atrial septal defect, ventricular septal defect, PDA, or biscupid aortic valve); is admitted to the listing center hospital; and, requires infusion of high dose or multiple inotropes (new) (f) By exception Pediatric Status 1B Heart Criteria Has a diagnosis of cardiomyopathy and requires infusion of one or more intravenous inotropic agents (new) (b) Has a diagnosis of congenital heart disease and requires infusion of low dose single inotrope (new) (c) By exception ABO-incompatible Criteria -higher isohemagglutinin titer eligibility, potentially 1:16 ABO-incompatible Allocation -Classify ABO-incompatible candidates as a “secondary” blood match

Ongoing Committee Initiatives Kidney Working Group Exploring regional sharing for highly- sensitized pediatric kidney candidates Our Kidney Working Group and members of the Kidney and Histocompatibility Committees are exploring regional sharing for highly-sensitized, pediatric kidney candidates. The Kidney Working Group has drafted a concept brief based on its discussions thus far. It is now working to flesh out the details of this concept by getting feedback from, and building consensus with, groups of the transplant community that would be integral to the success of this allocation schema.

Ongoing Committee Initiatives Pediatric Transplant Training & Experience Problem: OPTN bylaws do not require pediatric transplant experience Recommending bylaw changes to MPSC Finally, the entire committee is working to address what we believe is a deficiency in the current OPTN bylaws. Just like every other transplant program, key personnel at transplant programs that primarily transplant pediatric patients must meet the requirements in one of several “pathways” for each respective organ. BUT, the bylaws do NOT require key personnel at those programs that primarily transplant pediatric patients to have any pediatric transplant training or experience. Part of the problem is that the bylaws do not define what constitutes a pediatric transplant program. We recognize that pediatric transplantation is a specialty within the field of transplantation. Therefore, we are developing recommendations to address this void in the bylaws for the Membership and Professional Standards Committee’s consideration. Our recommendations will include a formal definition for “pediatric transplant programs.” We have discussed using the definition from the CMS Conditions of Participation - a pediatric transplant program is one that performs 50% or more of its transplants on pediatric patients in a 12-month period.

Pediatric Committee Contacts Chair: Heung Bae Kim, M.D. heung.kim@childrens.harvard.edu Vice-Chair: Eileen Brewer, M.D. ebrewer@bcm.edu Staff Committee Liaison: Chad Waller chad.waller@unos.org Are there any questions?