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Kansas City Star (Op-Ed): System for liver transplants is rigged against those who live in the Midwest or South

December 28, 2021

Imagine you receive a devastating diagnosis: You have stage 4 liver cancer. Your doctor tells you the only thing that will save your life is a liver transplant. You are not alone. Today, just under 100 Kansans and more than 140 Missourians are waiting on a national list to receive a liver. But as you wait, your name is never called. What if you learn this is because livers from the Midwest, organs donated from your friends, family and neighbors, are being sent to other parts of the country where people donate at much lower rates? And what if you discover the entire system to allocate donated livers is rigged against you simply because you live in the Midwest?

Last week, our biggest fear was confirmed when emails were released from the United Network for Organ Sharing or UNOS, the organization tasked by the U.S. Department of Health and Human Services to allocate organs nationally, showing it colluded against Midwest and Southern states when it issued a new liver allocation policy in December 2018.

For three years, we have fought against this decision and continuously raised the alarm about the major flaws in the policymaking process. UNOS overruled the Liver and Intestine Committee, whose members are some of the nation’s leading transplant experts; excluded certain public comments in the deliberations, including those from the University of Kansas; and arrived at an outcome that was significantly different from the previous decision. We knew, based on these actions alone, that the process was fundamentally unfair.

What we learned last week with the release of these emails was far worse. The process was not simply flawed — it was designed to deliberately deny patients in the Midwest and the South their fair chance at a lifesaving liver transplant. There are hundreds of pages of emails that show clear collusion between UNOS, and in particular its CEO, a New England-area organ procurement organization or OPO, and others prior to the changes in the liver allocation policy being announced. These favored OPOs were sent UNOS documents to edit and reports to comment upon, including letters to HHS. They were asked to weigh in on policy prior to actions taken by the UNOS board of directors, and wrote arguments for its CEO to use. All of these actions benefited certain states at the expense of states in the Midwest and the South. They led to the adoption of an organ allocation policy that is predicted to result in a substantial decrease in organ availability in certain parts of the country, including where we live.

Further, dozens of the emails use profane language and disparage Americans living in the South. One, authored by the president and CEO of the New England OPO and sent to the UNOS CEO, says, “You’re a dumb (expletive) for living” in the South. The emails show a clear regional bias against those who UNOS and their cronies do not consider the coastal elite. But what these emails do not show is that it is Midwesterners and Southerners who selflessly donate organs at a higher rate than those in the Northeast. And it is our family, friends and neighbors who answer the call when asked. The callous arrogance of UNOS and their favored OPOs in the Northeast and Northwest ignore this fact. This cannot continue.

These emails have now shown, without a shadow of a doubt, that the liver allocation decision was fundamentally flawed, and the body charged with carrying it out is systematically broken. We call on HHS to reverse this biased, partial and unjust allocation policy. When you are facing a life-and-death transplant diagnosis, you need to know that the system charged with providing organs is fair, no matter where you live and no matter who you are. The lives of our family and friends depend on it.

To read the article online, click here.

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