Stakeholders Pan OPTN for Last-Minute Revisions to Reform Proposal that Would Maintain Vast Disparities in Access to Lifesaving Transplants

The OPTN/UNOS Liver and Intestinal Organ Transplantation Committee recently voted to advance a proposal on liver distribution reform that deviates from a proposed set of policies released for public comment earlier this year. CODE has serious concerns about the revised proposal because it would not produce meaningful reduction in geographic disparity in access to transplants and did not undergo public comment. The OPTN/UNOS Board of Directors will consider the revised version at its meeting on December 4-5, 2017 in Atlanta.

November 9, 2017
 
For Immediate Release
Contact: Shea McCarthy, (202) 688-0227, smccarthy@thornrun.com
 
On October 10, 2017, the OPTN/UNOS Liver and Intestinal Organ Transplantation Committee (Committee) voted to dramatically revise a proposal from earlier this summer to reform liver distribution. As an organization dedicated to equity in access to livers for transplant — the Coalition for Organ Distribution Equity (CODE) — strongly opposes the new proposal because it would not meaningfully reduce geographic disparities and, by putting off bona fide reforms, puts patients at risk. As a result, the new proposal is also out of compliance with the Department of Health and Human Services’ (HHS) Final Rule governing liver distribution policy, which dictates that “allocation policies ... shall not be based on the candidate’s place of residence.”
 
The OPTN Committee has considered policies to address geographic disparity for more than 22 years.  Each year, hundreds of patients die waiting for a transplant due to current inequitable distribution policies. Despite the urgent need for reform and a multi-year, expert-driven process, CODE is disappointed hundreds of very sick patients will continue waiting under the new proposal. Moreover, the new policies have not undergone a required opportunity for public comment or an in-depth assessment of its impacts. At the very least, CODE demands that the OPTN Committee set clear goals for the reduction in geographic disparity in organ allocation it must achieve and commit to revisiting any proposal adopted this year every six months until that goal is achieved.
 
“The current distribution system is completely arbitrary and we support efforts to fix it,” said Dr. Sander Florman, who is Director of the Recanati/Miller Transplantation Institute at Mount Sinai Hospital. “However,” he continued, “the current proposal, and especially these last-minute changes, fall well short of meeting the essential goal that where you live should no longer determine your opportunity for transplant, or even whether you live or die.”
 
Tom Mone, CEO of OneLegacy, the U.S.’s largest organ recovery agency, said, “This proposal disregards the demographic reality of inconsistent rates of liver disease and donor potential, leading to unnecessary deaths of liver disease patients in our communities and across the nation.”
 
OPTN’s original proposal introduced region-level sharing of donated livers for patients with Model for End-Stage Liver Disease (MELD) scores above 29, considered by many as a positive step toward broader sharing. It was subject to public comment from late July to early October. After the public comment period ended, the Committee revisited the July proposal and voted to raise the regional sharing threshold from a MELD of 29 to 32. The OPTN/UNOS Board will consider this revised version at its meeting in early December without considering comments on these latest reforms.
 
CODE is deeply concerned about the new 32 MELD sharing threshold because it undermines the intent of liver distributions reform. The 29 MELD sharing threshold, while still of concern, was more acceptable because it is the point at which the risk of death for patients rises dramatically and it reflects the national median MELD at time of transplant. An increase in the MELD threshold from 29 to 32 neutralizes the nationwide impact to a point CODE can no longer support.
 
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.