A plan to redistribute donor livers from areas where donor numbers are higher, like Kansas City and the South, to organ-needy coastal areas is on hold after protests from members of Congress representing the areas that would have seen transplant wait times increase.
That group included U.S. Rep. Kevin Yoder, a Republican who serves the Kansas City area. Yoder said last week's meeting of the United Network for Organ Sharing's Liver and Intestinal Organ Transplantation Committee resulted in tabling a proposal to change to the way the organs are distributed.
“It’s my understanding the result of last week’s UNOS forum was to further review the process, and no changes will be made in the immediate future," Yoder said in an emailed statement. "I still believe the best solution moving forward is to work to increase organ donor rates across the country and ultimately save more lives. I would like to see other states replicate the processes used by Kansas organizations such as the Midwest Transplant Network and Gift of Life.”
Richard Gilroy, a University of Kansas Hospital physician who sits on the liver transplant committee, confirmed that after a series of votes the committee decided it was not ready to recommend a change to the way organs are distributed.
"What the ultimate decision was is that we are currently still looking at redistricting, but the model that was proposed in its current form isn't moving forward," Gilroy said.
Regional variation
There are 11 regions for organ sharing in the United States, and the amount of time a person in need of a liver transplant might wait varies widely from region to region.
In the Kansas City area, it might be a matter of months, while on the coasts wait times can run five years or longer. According to Yoder's office, about 6,000 liver transplants are performed annually and about 12,000 Americans await a liver transplant.
According to a UNOS concept paper on the proposed reallocation, 1,523 patients died while awaiting a liver transplant in 2013 and another 1,552 were removed from the transplant eligibility lists because they had become too sick for a transplant to have a high likelihood of success.
The proposed realignment was developed through a computer-generated algorithm that projected about 500 fewer deaths per year by evening the wait times nationwide. Those who currently have short wait times could survive longer before their transplant, according to the projections, allowing those who currently have longer wait times and greater risk of death to receive organs sooner.
But Gilroy said some on the committee had serious questions about the algorithm's limitations in predicting continued organ donation patterns.
"People change their behaviors," Gilroy said. "The model, which is fragile, fails to predict what's going to happen, and you could see the opposite happen. You could see more deaths."
Gilroy said some on the committee also had concerns about the cost and risks of waiting longer for transplants and the cost and risks of transporting organs farther. When an organ has to travel by plane, the transplant teams "fly in any weather," he said, and in recent years nine people on those teams have died in two crashes.
"So if we have three times the number of flights, we have three times the possibility of transplant teams going down," Gilroy said.
Gilroy said the committee is looking at other organ distribution models, including one based on concentric circles or geographic radius from the donation site. But he said it would be months before it had anything to present publicly.
Proposal generated concern
Concern about the proposed computer-algorithm model caused an unusual amount of interest in UNOS. More than 300 people registered for a public forum on the liver transplant idea Sept. 16 in Chicago. Others listened online.
Before that forum and the committee meeting that followed the next day, Yoder and about 50 of his congressional colleagues took the rare step of writing a letter protesting the proposed reallocation to Mary Wakefield of the Health Resources and Services Administration. UNOS is a nonprofit, but Wakefield's agency, under the U.S. Department for Health and Human Services, administers the UNOS contract to manage the nation's organ transplant system.
In the letter, Yoder acknowledged the "large geographic disparity in the rates of organ donation," but said regions with high donation rates should not be punished by seeing their organs go to others.
“Kansans, and the Midwest as a whole, are historically generous organ donors and UNOS should not adopt proposals that punish successful programs and decrease access to organs where donation rates are highest," Yoder said. "We must implement programs that raise the organ donor consent rate in the areas of the country where disparities in wait times are the greatest.”
To increase donation rates elsewhere, Yoder and others are encouraging other regions to adopt grassroots donor education programs, like one promoted by Overland Park-based Gift of Life. That nonprofit organization, with four employees, was formed by families with children in need of transplants.
KC program plays a role
Keith Anderson, executive director of Gift of Life, said its signature outreach program, Lifesavers, has reached more than 200,000 people in the Kansas City area by sending speakers to 90 area high schools and talking to students about what it means to sign up to be an organ donor when they get their driver's licenses. The students are then encouraged to talk with their parents about organ donation.
Gift of Life uses surveys to track the effectiveness of the program, he said, and about 74 percent of the students reached say they want to become donors.
Anderson said most cities have organ transplant hospitals and an "organ procurement organization" responsible for the logistics of transporting organs from donors to those hospitals. But few have organizations like Gift of Life, dedicated solely to organ donation education.
“Those three things together are really what make it work," Anderson said. "Most cities only have two of the three.”
Anderson said Yoder "did step up to the plate" in encouraging further review of the proposed reallocation plan, and Gilroy played a key role as a member of the UNOS liver committee.
“His message as a member of the committee has been you can look at the mathematical models, but if the other states are not doing anything for community education, they’re not doing anything to increase organ donations,” Anderson said.
This story originally appeared on khi.org.
