Pediatric Transplantation Committee Fall 2016

Policy Implementation Proposal Board Approval Implementation Date Phase I - Change Pediatric Heart Allocation Policy Pediatric Status 1A & 1B Criteria June 2014 March 22, 2016 Phase II - Change Pediatric Heart Allocation Policy Changes to intended ABOi eligibility requirements Improve priority for infants and intended ABOi-eligible Eliminate in utero heart registrations July 7, 2016 This proposal was approved by the Board in June 2014. Implementation occurred in two phases: Phase I included changes to Pediatric Status 1A and 1B qualifying criteria. Phase II included the remaining components of the proposal (changes to ABO incompatible eligibility requirements, changes in priority for infants and ABOi-eligible pediatric candidates, and elimination of the option to register candidate while in-utero). The Pediatric and Thoracic Committees will be reviewing initial post-implementation data at their fall in-person meetings to monitor whether the policy changes are achieving their intended results. You can find additional details can be found in the policy notice - https://optn.transplant.hrsa.gov/ContentDocuments/OPTN_Policy_Notice_07-24-2014.pdf (p. 78)

Board Approved Projects Summary Key Dates Pediatric Transplantation Training & Experience Established training and experience requirements for key personnel at pediatric heart, liver, and kidney transplant programs A separate Committee project will address concerns with the Emergency Membership Exception pathway for heart and liver transplant programs. Applications – due no sooner than March 2017 Implementation - no sooner than December 2018 The Board passed the pediatric transplantation training and experience bylaws proposal at the December 2015 Board meeting. The delayed implementation gives pediatric transplant programs enough time to either ensure their key personnel are qualified, or recruit a qualified primary transplant physician or primary transplant surgeon. Any program that has listed at least one pediatric candidate in the last five years will receive an application. This is estimated to happen in March 2017. Due to the anticipated volume of applications, completed applications are due to UNOS within 90 days of receipt. The OPTN/UNOS Membership and Professional Standards Committee (MPSC) will be reviewing all applications. The estimated implementation date is December 2018. Please call UNOS if you have questions about the application process or membership requirements. You can find additional details in the policy notice - http://optn.transplant.hrsa.gov/media/1224/policy_notice_12-2015.pdf (p 163)

POC-Approved Projects Summary Status Revisions to Pediatric Emergency Membership Exception Pathway The Board approved the new minimum training and experience requirement for pediatric transplant programs in December 2015. Several Board members asked the MPSC and Pediatric Committees to resolve gaps in the Emergency Membership Exception pathway for heart and liver transplant programs. A working group has been formed to consider a framework for these changes. Thereafter, the Pediatric Committee will consider the changes to the OPTN bylaws that are needed to close the gaps in the Emergency Membership Exception pathway. These changes will require public comment (potentially January 2017) and consideration by the Board (potentially June 2017). Strategic Goal Alignment: Goal III POC Approved in July 2016 Working Group will be meeting through fall of 2016

Future Projects Project Summary Status Reduce Pediatric Liver Waitlist Mortality A Working Group has been examining the problems of extended waiting times and waiting list mortality facing pediatric liver candidates, especially very young candidates. The Working Group identified a high level solution to move all liver candidates less than 18 years old higher in the liver allocation sequence and prioritize those pediatric candidates most at risk of death. Modeling by SRTR will be required. Public comment will be required (potentially January 2018). Strategic Goal alignment: Goal III POC consideration in August 2016

Future Projects Project Summary Status Tracking Pediatric Transplant Outcomes Following Transition to Adult Care Pediatric heart, lung, and liver transplant recipients are often "handed off" to adult transplant programs for post-transplant care when the recipients turn 18 years old. This practice enhances that ability to report post transplant follow-up data by a transplant program to the OPTN. This transition practice is not consistent for pediatric kidney transplant recipients. Payers, and to some degree a recipient's geographic location, influence where a pediatric kidney recipient receives post transplant follow-up care. If this follow-up care is performed by a non-OPTN affiliated nephrologist, the transplanting hospital often reports this recipient as "lost to follow-up" to the OPTN due to the difficulty obtaining information or the inability to contact the recipient (or provider). This "lost to follow-up" classification for pediatric recipients negatively impacts true understanding of graft and patient survival. Long term follow-up data is vital to understanding post-transplant survival. Strategic Goal Alignment: Goal III Concept still in development

Questions? William Mahle, M.D. Committee Chair mahlew@kidsheart.com Christopher. L. Wholley, M.S.A. Committee Liaison christopher.wholley@unos.org