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September 16, 2014 01:00 AM

UNOS struggles to address disparities in access to donated livers

Sabriya Rice
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    Geographic disparities in access to donated livers is a big problem in the U.S. and a solution is urgently needed to accompany awareness efforts, said experts from the United Network for Organ Sharing during a public forum Monday in Chicago.

    “We shouldn't be driving a system that makes things worse,” said Dr. David Mulligan, chair of the liver and intestinal organ transplantation committee for UNOS. “We need to look at what makes sense.”

    UNOS, a not-for-profit that contracts with the federal government to oversee the nation's organ transplant system, issued a preliminary proposal in June to address large geographic disparities in access to donated livers in the U.S. The proposal (PDF) included narrowing the current number of allocation districts from 11 to possibly as few as four. It immediately sparked concern among some liver transplant providers who said the change could increase how long organs must travel, and would negatively affect regions with higher rates of donations.

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    An estimated 400 people attended Tuesday's meeting, nearly double the turnout from previous meetings, a UNOS spokesman told Modern Healthcare.

    The current model for organ allocation for patients with end-stage liver disease helped to ensure that the sickest patients were prioritized. But the regional boundaries in that model were based on trends in kidney transplantation, not livers. This led to increasing disparities over the past decade, and essentially prompted the suggested redesign, Mulligan said.

    Under the current model, patients in the Northeast and on the West Coast are less likely to receive organ transplants in a timely manner.

    The proposed redesign uses two statistical tools not commonly applied in healthcare. One is borrowed from the methods used to establish and track election districts and school districts, while the other is based on optimization statistics used by the airline industry to increase travel efficiency. Mathematical modeling uses optimization to look at possible outcomes, said Sommer Gentry, associate professor of mathematics with the U.S. Naval Academy. She helped inform UNOS on the application of the designs.

    But the complex mathematical algorithm was cited by several attendees as potentially problematic.

    Attention should focus on increasing the number of individuals making donations, Dr. Tim Schmitt, director of transplantation at the University of Kansas Hospital, Kansas City, said in an interview. “By shuffling organs around from one place to the other, we may treat more people faster, but we won't make a real impact in the long term. Until you go out and really educate your population and say that donation is important, it will be hard to make a difference.”

    Though the primary focus of UNOS is organ allocation, organization leaders said they have supported efforts to increase donations, with little success. The group helped establish Donate Life America, an organization focused on promoting organ donation in the U.S., and has actively participated in national collaborations to identify and share local best practices.

    “We've not been able to make much of a difference in the last eight years to increase the number of donors, despite everything that we are trying,” Mulligan told attendees. He said he's glad the preliminary proposal has prompted so much discussion, and welcomed options to help inform the liver and intestinal committee as they work out solutions to address the problem.

    As the committee considers those options, they were encouraged by audience member Dr. Leona Kim-Schluger, a professor of medicine at Mount Sinai School of Medicine, who urged everyone to “strip away the politics and financial incentives,” and focus on what is right for the patient. She says change is needed, but it must be done right.

    A UNOS representative said there is no set time frame for a policy proposal, but the report from June said the earliest potential policy proposal could be circulated for public comment by spring 2015. “We're not just talking about a theoretically mathematical model, patients lives are at stake,” Mulligan said. “We have a great challenge ahead of us. We need to think out of the box.”

    Last year, roughly 3,000 Americans died while waiting for a liver transplant or were removed from the list because they were too sick to undergo the procedure.

    A bipartisan group of more than 50 U.S. House members has raised concerns about the preliminary UNOS proposal. In a letter to Mary Wakefield, administrator of HHS' Health Resources and Services Administration, they wrote: “If implemented, the proposal would result in dramatic adverse impacts for individuals with liver disease throughout the United States.

    “More organs for transplant would travel significantly longer distances, areas with high organ donation rates would be disproportionately affected, organs would experience longer cold ischemic times, and the proposal may not have the desired effect of lowering overall wait-list mortality.”

    Follow Sabriya Rice on Twitter: @Sabriyarice

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