Kansas Health Institute: Liver transplant reallocation plan on hold

By Andy Marso-KHI News Service
Published on September 27, 2014

50 Transplant Healthcare Professionals Oppose Proposal To Fix Geographical Disparity

Some in the transplant community support fairness and eliminating the issue of unfair access to a life-saving deceased donor liver transplant. It is a well settled fact that liver transplant candidates in some parts of the country must wait until they are much more ill before receiving a liver transplant while candidates in other areas of our nation may receive a liver transplant when they are much less ill.

Over 50 transplant physicians are against changing deceased donor liver allocation policy to help eliminate the geographical disparity. They are quite active and took action all summer. We have no idea how many transplant physicians who are in favor of changing deceased donor liver allocation policy to help eliminate the geographical disparity took action and wrote to UNOS and met with members of Congress. – m.s.

TOPEKA — A plan to redistribute donor livers from areas where donor numbers are higher, like Kansas City and the South, to [other] 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.

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 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.

Yoder stated that he would like to see other states replicate the processes used by Kansas organizations such as the Midwest Transplant Network and Gift of Life.

Approximately 400 people attended a public forum held on Sept. 16 to discuss various concepts to reduce geographic variation in access to liver transplantation.

The opinions and recommendations expressed will help theOPTN/UNOS Liver and Intestinal Organ Transplantation Committeeas it continues to assess potential improvements to liver transplant policy.

“At this point, no specific policy recommendation has been determined,” said Carl Berg, M.D., OPTN/UNOS President. “But this ongoing discussion has identified a number of areas of focus, as well as key questions and concerns that need to be answered in developing any future proposal.”

The forum addressed concepts distributed for public input in June 2014. Results of a questionnaire that accompanied the document were also shared and further discussed at the forum.

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 research and algorithm that was run 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.

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.”

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.

“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.

Previously, we reported that doctors at the University of Kansas Hospital have teamed with dozens of other transplant programs in the south and midwest to urge delay of a proposal that would attempt to discontinue the geographic disparity with regard to  how livers for transplant are distributed throughout our nation.

KU Hospital joins effort to oppose liver transplant proposal
By Dan Margolies
Aug. 26, 2014
KANSAS CITY, Kan. — Doctors at the University of Kansas Hospital have teamed with dozens of other transplant programs to urge delay of a proposal that would change how livers for transplant are distributed across the country.

The proposal, scheduled to be taken up in mid-September in Chicago, would have a profound effect on KU Hospital, which runs one of the top liver transplant programs by volume in the country, and other regional transplant centers.

Currently, donor livers are shared among the sickest patients within each of 11 regions in the country. KU benefits from that arrangement because organs are donated at a higher rate in this region than anywhere else.

KU performed 114 liver transplants in 2013, according to the Scientific Registry of Transplant Recipients. Only nine other programs nationwide exceeded that number.

The change under consideration aims to make access to donor livers more equitable by shrinking the 11 regions to eight or even four. That way, proponents of the change say, the very sickest patients — many of them on the East and West coasts, where donor rates are comparatively low — won’t have to wait years, as they often do now, for a transplant.

Dr. David Mulligan, a professor of surgery at Yale and chairman of the committee considering the proposal, said equalizing access will give the very sickest patients the same shot at survival as those with better access to livers.

“Patients can wait a little longer and they will be fine and they’re going to have excellent outcomes, and so will the people that have been dying with a chance of getting one who may be in areas that have less robust access to these organs,” he said recently.

The proposal, however, has roiled many transplant centers, particularly in regions of the country where donor rates are high. If the proposal is adopted, many donor organs from those centers’ regions will be shipped to other regions of the country, leading to longer wait times — and higher mortality rates, according to opponents of the change — for their patients.

Concerned about the effects of the proposal, 45 transplant center physicians and officials last week sent a strongly worded letter to the head of the federal agency that oversees organ donations, the Health Resources Services Administration. The signatories included Richard Gilroy, medical director of liver transplantation at KU, and Jameson Forester, director of abdominal transplantation at St. Luke’s Hospital of Kansas City, Mo.

“If this proposal becomes implemented without adequate and constructive improvements, it would represent the most drastic change in liver allocation ever and would significantly disadvantage many areas of the country currently able to serve their patient populations,” the letter stated.

The letter acknowledges that there is a critical shortage of donor livers in the United States — more than 12,000 patients are listed for liver transplants and only 6,000 transplants are performed annually — but urges further study before any changes are made to the way organs are allocated.

Opponents of the proposal say a better way to reduce the geographical disparities in organ access would be to increase organ donations in areas of the country where donor rates are low.

“Right now, the change in this policy is going to take a lot of livers that would otherwise be available for people here in the Midwest — and Midwesterners are donating them — and take those and go to the East Coast and the West Coast with them,” said Dr. Sean Kumer, a liver transplant surgeon at KU.

That, Kumer said, would merely change “where people die.” Instead, he said, regions with lower donor rates should be encouraged to emulate the KU region, where 82 percent of patients deemed eligible to do so donated organs in 2013.

“So when you look at the population of our area and you compare it to the New York region, for instance, they have 10 times more the population than we have. And their conversion rates are somewhere between 55 and 60 percent,” Kumer said.

The committee considering the organ allocation proposal is holding a public hearing Sept. 16 in Chicago. Kumer said he, along with Gilroy and Dr. Timothy Schmitt, director of transplantation at KU, will be there.

The KHI News Service is an editorially independent initiative of the Kansas Health Institute.

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