As Jeff Magill’s wait for a new liver dragged into its 22nd month in August, his wife and doctor both feared the Northland father was growing too sick to ever reach the operating table.
His kidneys started to fail. His blood pressure plummeted. He required life support.
Now, thankful as can be for the liver that arrived just short of too late, Magill worries that other University of Kansas Hospital patients may not be as fortunate.
That’s because a proposed change in the way livers from deceased donors are allocated nationwide could redirect dozens of livers each year from the Kansas City region to other parts of the Midwest.
“Somebody has the impression we have an abundance of livers here,” Magill’s wife, Pam Magill, said recently in her husband’s post-transplant hospital room. “If we had an abundance of livers here, he wouldn’t have had to wait this long.”
Other parts of the country also stand to lose, or gain, livers under the reallocation policy proposal unveiled last month.
Nationally, some call the proposal long overdue. It would even out wait times nationwide for the sickest patients, whose average waits by region now vary from a few months to more than a year. Supporters call it a fairness issue and point out that rich people can move around the country to shorten their wait times while poorer people cannot.
But opponents, including Kansas City area doctors who helped beat back a similar policy two years ago, fear it will create more harm than benefits. Locally, wait times would grow and more patients could die waiting. Nationally, some smaller transplant programs might have to close. And about 2 percent fewer transplants are predicted nationwide, as some livers flown greater distances expire before they can be transplanted.
“I definitely believe these changes will impact our patients, and it won’t be in a good way,” said Ryan Taylor, the KU Hospital hepatologist who helped Magill survive until his late-August transplant.
Any proposal to help the sickest patients get livers sooner should focus on increasing donations, especially in regions with below-average donor rates, say opponents of the proposed policy. Otherwise, it’s impossible to increase transplants and save more lives, they say.
“It’s sort of akin to the Titanic going down and only a certain number of life rafts” being available, said Sean Kumer, a KU Hospital transplant surgeon. “We are just shuffling where the life rafts go; we are not increasing the number of life rafts.”
But increasing donations alone will not solve the problem, according to Ryutaro Hirose, a California surgeon and chairman of the United Network for Organ Sharing liver transplant committee that crafted the proposed policy.
“No question we do need more lifeboats,” Hirose said. “But even if we got 100 percent of those donors to donate, and we had all those organs to transplant, that would do nothing to cure the … unfairness of the system based on the regions and the borders that are drawn right now.”
Nationwide last year, 7,127 people received transplants while 1,426 died waiting. More than 14,600 are waiting for livers.
6.4 months: median wait for a donor liver for KU Hospital patients
13.3 months: median wait for patients in six-state transplant region that includes Missouri, Kansas
15.7 months: median wait for patients nationwide
Currently at KU Hospital, a liver transplant patient’s median wait time is 6.4 months. Nationally, it’s more than twice that. In California, which has higher demand and fewer donors, many patients are within a few weeks of dying before a transplant happens, if one happens, Hirose said.
“I think the folks in Kansas City are truly very much concerned about their patients having to get sicker before they get a transplant,” Hirose said. “I think anyone who has it pretty good under the current system probably is opposed to changing the system.”
The nonprofit United Network for Organ Sharing manages the nation’s organ transplant system. Its policies guide how donated organs are matched with transplant candidates.
The liver distribution system is built partly around MELD scores, short for Model for End-stage Liver Disease. The score reflects how sick a person is as liver function deteriorates.
Not all MELD scores are equal. Some regions boost the scores by adding a few “exception” points if, for example, the patient has liver cancer.
But generally, the higher a score, the less time a person can live. Also the higher the score, the higher a patient moves up on the wait list.
Magill’s MELD score started at 17 nearly two years ago. At the time, he expected to wait six to eight months for a liver. As his name finally neared the top of the wait list last month, his MELD score hit 39, one below the maximum.
Still, there was no way to know when a liver would become available.
In the Kansas City area, hospitals notify the Midwest Transplant Network when they have a potential donor, who must be on life support, younger than 70 and have no medical conditions that would preclude donation.
After Midwest Transplant works with the donor’s family and procures a liver, it first offers the organ to the region’s top-priority patients, those with a MELD score of 35 or higher. The region generally covers Kansas, Missouri, Iowa, Nebraska, Colorado and Wyoming.
If no one accepts, the liver is offered within Midwest’s local area, which covers Kansas and most of western Missouri, to patients with MELD scores below 35. If there’s no taker, the liver is offered to regional patients with MELD scores below 35. If the liver is still unclaimed, it’s offered nationwide.
Last year, Midwest Transplant procured 87 livers that went to local donor area patients, 35 to regional patients and 13 to national patients, including people in California, Florida and New York.
Under the proposed policy, the Kansas City area’s region would change and grow, as the number of regions nationally drops from 11 to eight. Kansas City’s region would lose Colorado, Wyoming and eastern Missouri but gain Oklahoma, Minnesota, North Dakota and South Dakota.
That would put in the same region KU Hospital and the Mayo Clinic of Minnesota — two of the three highest-performing liver transplant centers in the country, according to national data. Last year, the two facilities performed nearly the same number of liver transplants involving deceased donors.
Yet at the end the year, Mayo’s liver wait list was nearly triple KU’s.
A wait list that large means many more patients competing for the same donated livers.
“So people in Kansas will wait longer,” and more will die waiting, said Richard Gilroy, a gastroenterology specialist in Utah who studied organ donation rates nationwide while previously working at KU Hospital. “See, Mayo has resources KU can never afford.”
Under the proposed policy, the MELD score for top-priority regional patients would lower from 35 to 29. That also would steer livers away from KU Hospital, St. Luke’s Hospital and Children’s Mercy Hospital, the only local liver transplant centers. KU performed 225 transplants from 2013 through June 30. St. Luke’s and Children’s Mercy performed 22, combined.
The proposed policy also greatly concerns doctors in some other areas of the country, especially the Southeast. The Eastern Seaboard from Georgia north would become part of New York’s region, and models show the proposal would move as many as 100 livers a year northward, one surgeon said.
That would be unfair, said Joe Magliocca, chief of liver transplant surgery at Emory University in Atlanta. Waiting-list deaths in Georgia are significantly higher than in New York, where patients generally aren’t as sick, he said.
The problem, he said, is that the proposed policy is based “on a single metric of the geographic disparity … but it ignores many of the unattended consequences that we see will happen.”
That’s why Magliocca, KU doctors and others say it’s more important for organ donation rates to increase nationwide. Rates are based on the number of organs being procured from potential donors identified by hospitals.
LifeShare Transplant Donor Services of Oklahoma nearly doubled its organ procurement numbers in the last two years by adding staff, increasing public education and spending more time in hospitals.
“All organ procurement organizations nationally, including ourselves, have the opportunity to recover more donors,” said LifeShare President and CEO Jeff Orlowski, who hails from Kansas City, Kan. “The challenge is to figure out how to make that happen.”
Three of the four procurement organizations in New York state had liver donor rates below Midwest Transplant’s last year, national data show. The rate for one of the New York organizations was among the lowest nationwide. Meanwhile, New York left unused $1 million designated for increasing donations, a recent audit found.
That troubles Kumer, who complains that “this new proposal is going to shuffle livers across the country to places that have not done a good job of getting donors.”
Hirose counters that death rates for strokes, gunshots, vehicular crashes and other head traumas have a bigger impact on organ availability, and those death rates vary substantially across the country.
‘You just made our day’
How much the debate has divided the medical and patient community is apparent in comments being posted online during the proposal’s public comment period, which runs through Oct. 15. After that, the committee may make changes before setting another comment period, Hirose said.
“I think we’ve modified the policy several times and we will continue to modify the policy in response to any new comments or concerns,” Hirose said. “So I see this taking at least a year to even get approved, and that’s even a year or two away from getting implemented.”
Magill, 49, an assistant general manager for the car rental shuttle buses at Kansas City International Airport, waited 681 days for a new liver after cirrhosis unrelated to alcohol damaged his.
“You start to get to a point where it’s like, ‘Am I ever going to get this call or am I going to be one of these 20 people per day that die waiting for an organ transplant?’ ” he said. “That’s how we were starting to feel toward the end.”
How much the increasingly diseased liver affected his life shocked him.
“Towards the end of July, it had gotten so bad that I couldn’t work, I couldn’t do anything. … I just sat in a chair, slept, watched TV,” he said, his voice breaking as he recalled the most difficult times, including a final 17-day hospital stay before the Aug. 27 transplant.
Watching nearby, his wife teared up. It had been her cellphone that rang in the KU Hospital room at 11:24 p.m. Aug. 26. A liver was available, the caller said. Would they accept?
“Absolutely,” Pam Magill answered. “You just made our day.”
Still, the Magills had to wait a sleepless night and into the next day to hear if the surgery was a go.
“No one should have to wait this long,” Pam Magill said.
To learn more about the proposed liver policy or post comments, go to https://optn.transplant.hrsa.gov/governance/policy-initiatives/liver/