OPTN/UNOS Transplant Coordinators Committee

1. OPTN/UNOS Transplant Coordinators Committee Spring 2013 Update

2. Ongoing Committee Initiative In development for Fall 2013 Public Comment • New policy 3.2.8: Patient Notification of an Extended Inactive Status • Notify candidates who have been in inactive status for 12 consecutive months and annually if they remain inactive

3. Rationale for Proposed Policy • Transparency of listing status for candidates • Consistent with rationale behind existing OPTN policy 3.2.7, requiring patient notification • When patient is listed; • If the decision after evaluation is to not list; or • If the patient is removed for the wait list for reasons other than transplantation or death.

4. Active and Inactive WL Registrations March 2, 2012, by Organ Type

5. Median Time in Most Recent Inactive Status for Inactive Registrations as of March 2, 2012, by Organ and Total Time Waiting Median Time in Inactive Status 25 yrs 20 yrs 15 yrs 10 yrs 5 yrs 0 days 5

6. Policy Rationale, Continued • Some patients don’t know they are inactive. • Some patients who know they are inactive do not know they are ineligible to receive offers. • Just as policy requires patient notice at listing and delisting, policy should require patient notification when inactive status is prolonged.

7. Other Ongoing Committee Initiatives Tiedi documentation project • Identify problems with existing data field descriptions on OPTN forms • Fields that lack sufficient detail • Confusing or incorrect descriptions • Identify fields for review by other committees for current relevance or improved description

8. Additional Information • Join the transplant coordinators listserv at http://groups.yahoo.com/

9. Questions? • Melissa Dunbar-ForrestCommittee Chairmdunbarforrest@mednet.ucla.edu • Name UNOS Region # Representativename@unos.org • Kim JohnsonUNOS Committee Liaisonkim.johnson@unos.org