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Bruce Weir Testifies Before UNOS Forum

Contact: TRIO, Inc.
202/293-0980

On September 28, 2000 Bruce Weir testified on behalf of TRIO at the UNOS Liver Allocation Public Forum in Dallas, TX:

On behalf of Transplant Recipients International (TRIO) and all recipients, candidates, donors and donor families I thank you for the opportunity to address the very important life and death issues contained in this current UNOS policy proposal regarding liver transplant issues.

Reading this document is an accomplishment.  That it took twenty-two pages before it addresses allocation or “distribution” of organs bothers me.  On page 23, Section VII refers to “Liver Distribution”.  First of all, we will “distribute” organs when we have enough to go around.  Until then, we have to “allocate” them.  I am further disturbed that after those twenty-one pages, less than one page is devoted to allocation as UNOS is only now acknowledging what everyone else has known for some time, i.e., that wider distribution of livers and all organs is necessary for a fairer system of allocation.  To only now say “we are going to look at how best to do this” is an insult to those who have been waiting and especially those who have died waiting – waiting for improvement in the system.

The first twenty-two pages discuss why earlier scoring methods (Child-Turcotte-Pugh - CTP) were inadequate to assign statuses to liver candidates and now new methods (Mayo Clinic End-Stage Liver Disease – MELD) are much better measures for predicting survival of candidates with various types of liver disease/failure.  While we’re at it, let’s just scrap the status system and come up with an entirely new system based on MELD rather than CTP. 

We have come up with an entirely new way of ranking liver candidates, but we still can’t develop a system to decide what the pool of candidates should be from which to allocate these precious organs.

Donated organs do NOT belong to the OPO; they do NOT belong to the transplant center; they belong to the OPTN, which happens to be operated under contract with the federal government by the contractor, UNOS.  We need to remember that a lot of people are expecting the system to work for them.  By that, I mean the candidates waiting, not the transplant centers.

It has been almost thirty months since the so-called Final rule was first issued.  It called for Standardized Listing Criteria and standards for changing status.  The MELD system perhaps addresses that, but what happened to the Regional Review Boards?  The Final Rule called for increased public representation on the OPTN.  So far, nothing new.  The Final Rule also called for wider distribution of organs, initially livers.  The Institute of Medicine (IOM) reaffirmed this.  Congress appointed the IOM to review the Final Rule when lobbied to issue a one-year moratorium.  The IOM report was issued fourteen months ago.

We’re still waiting.

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