Organ Transplant Stakeholders Pan OPTN for Continued Delays in Lifesaving Reforms to Liver Transplant Waiting List

As announced at today’s meeting of the HHS Advisory Committee on Organ Transplantation, the Organ Procurement and Transplantation Network (OPTN)/United Network for Organ Sharing (UNOS) will fail to meet a self-imposed deadline (June 1, 2017) to adopt reforms to the liver distribution system that would reduce waiting times and save lives.

November 22, 2016
 
For Immediate Release
Contact: Harriet Melvin, (202) 550-2656, hmelvin@thornrun.com
 
Today, the Coalition for Organ Distribution Equity (CODE) expressed disappointment that OPTN/UNOS will fail to meet a self-imposed deadline of June 1, 2017 to vote on a scientifically-driven proposal that would improve the current system for liver distribution.  At today’s meeting of the HHS Advisory Committee on Organ Transplantation, Dr. Melissa Greenwald, Director of the HRSA Division of Transplantation, confirmed that they are setting a new goal to present a final proposal to the OPTN Board in December 2017. 

The proposal currently under consideration by OPTN/UNOS is over 22 years in the making.  In 1994, Congress reauthorized the National Organ Transplant Act (NOTA), clarifying that its intent “was to ensure patients that no matter who they were, or where they live, they would have a fair chance of receiving a necessary organ transplant.” In 1998, HRSA promulgated a Final Rule implementing NOTA, which highlighted existing geographic disparities and required implementation of policies “that provide organs to those with the greatest medical urgency… wherever they live.” Now, 22 years since reauthorization of NOTA, UNOS has completed a thorough, science-driven process to produce a proposed solution. In brief, the proposal would reduce the number of geographic regions used for organ distribution, which increases the importance of medical need, while retaining some key factors that favor patients located close to donated organs.
 
“It’s shameful that after years of consideration and countless opportunities for public input, efforts to improve the liver transplant system continue to be stonewalled by opposition who offer little scientific merit for their disapproval,” stated Harriet Melvin, Executive Director of CODE. “The overwhelming consensus among experts is that reforming the distribution system will save hundreds of lives. OPTN/UNOS must continue to move the process forward rather than catering to those who have opposed these improvements in any form.”
 
The OPTN/UNOS proposal to reduce the number of regions used for organ distribution was subject to public comment from August 15 to October 15, and CODE submitted extensive comments which highlighted the merits of the reform proposal. In those comments, CODE directly addresses the concerns of commenters who suggest that the reforms would be a burden to communities which benefit from the current system.  “It is unproductive to speak in terms of the proposal rewarding one community over another,” the comment letter explains. “Federal policy dictates that organs for transplant are a resource to be distributed fairly across the entire country. Rather than rewarding one area at the expense of another, we believe this policy seeks to make sure that patients nationwide who are most in need will have a better chance of accessing organs for transplant no matter where they live.”
 
According to HRSA, stakeholders should expect an updated proposal to be released for public comment in Spring or “more likely” Summer 2017, with the goal of presenting a final proposal to the OPTN Board in December 2017. CODE encourages HRSA and OPTN/UNOS to ensure an expeditious conclusion to their consideration of this proposal, as hundreds of patients’ lives are depending on this long-running process to finally come to conclusion.
 
About CODE
 
The Coalition for Organ Distribution Equity (CODE) is a collection of stakeholders committed to improving patient access to organs for transplant. Consistent with the models examined by the United Network for Organ Sharing (UNOS) in its concept paper titled Redesigning Liver Distribution to Reduce Variation in Access to Liver Transplantation, CODE advances policies that reduce geographic disparities in wait times, patient acuity at the time of transplant, and organ failure-related deaths. Inherent in this endeavor is the need to increase public and policymaker awareness regarding the current process governing organ distribution, its flaws, and how reforms can improve patient outcomes nationwide.