Left to die? New rule punishes Kansas City, promises longer wait for donor organs
Life in the Kansas City area just became markedly more precarious for some of us — potentially any of us — and not because of any change in crime, violent behavior, lifestyle or driving habits.
Because of a federal rule change. That’s it. One simple, unfair, autocratic rule.
As of Tuesday, those awaiting liver transplants in the region will wait longer — and risk deteriorating health if not death — as transplant patients from outside the region are given higher priority for organs donated here.
As a federal judge in Atlanta has already noted, the United Network for Organ Sharing’s Feb. 4 rule change means regional patients awaiting transplants, many of whom live in rural and lower socioeconomic areas, will no longer be first in line to have their lives saved.
Instead, donated livers — as hearts and lungs before them — will be flown about the country, within a 500-nautical-mile radius of the donor’s hospital.
It’s akin to poaching, as one health care professional put it privately.
“They have it, so we’re going to take it,” is how transplant surgeon and vice president of Perioperative Services at The University of Kansas Health System Dr. Sean Kumer summarized the rule’s approach.
Local patients who were once among the waiting list’s top 10 have been booted to 40th or worse, “with little to no chance of receiving those organs,” Kumer says. And even if they do, they may be sicker and their outcomes less positive. Meanwhile, the KU health system’s 80 to 100 liver transplants a year could be cut nearly in half, a blow that could be fatal not just to some patients but to some other states’ smaller transplant programs.
For Tyler Reimer the peril is all too personal. The 40-year-old teacher and coach at Pioneer Ridge Middle School in Gardner will likely see his excruciating year-and-a-half transplant wait extended. While his demanding coaching responsibilities tax his tenuous health and risk burdening his family if he’s unable to work, he also may be looking at having to become certified for a transplant all over again — which he says is three painful eight-hour days of being used as a pincushion.
“I just want to get it out of the way,” he told The Star of a possible transplant, adding that he simply pines for a “relatively normal existence.” He takes 18 medications a day, some of which merely counter side effects of the others.
And couldn’t it be any of us in his shoes? He reported feeling poorly after a football practice in 2018, and less than two months later was a transplant patient-in-waiting.
Besides letting others cut in front of local patients and endangering them, the University of Kansas Health System warns that more long-distance donations will lead to an increase in organs squandered and higher overall costs. And more deaths.
The United Network for Organ Sharing claims its new rule will save lives. But the KU health system, one of 14 plaintiffs fighting the rule in court, says the experience with heart and lung donations doesn’t bear that out.
For her part, U.S. District Judge Amy Totenberg, while allowing the rule to be implemented pending the lawsuit’s outcome, warned last year that, “The court remains deeply concerned that the government’s decision to proceed at this juncture ... may itself cause disruption in equitable and efficient liver transplant administration and allocation down the line.”
Likewise, U.S. Sens. Roy Blunt of Missouri and Jerry Moran of Kansas warned in a column last year that “the odds are not favorable for an individual in need of a life-saving organ transplant. And for those in the Midwest, those odds just got worse.”
The change, they wrote, “will benefit urban areas and densely populated states such as New York, Massachusetts, and California — at the expense of Midwestern and Southern states and rural communities, including Missouri and Kansas. Under the new plan, Missouri could lose 32 percent of livers from Missouri donors. In Kansas, it would be even higher: 45 percent.”
Reimer doesn’t sound embittered, but you couldn’t blame him for that either. The Kansas City region’s “donor service area” was ranked fourth in donations out of 58 areas in 2015 — the result of hard work, cooperation and education. One prime example of that work is Gift of Life, an organ donation education nonprofit headquartered in Overland Park that reaches tens of thousands of students in the region.
By contrast, The New York Times in 2018 lamented that “New Yorkers donate organs at a lower rate than anywhere else in the country,” and that, at the time, “the Centers for Medicare and Medicaid Services informed the local organ procurement organization, LiveOnNY, that it was failing to meet minimum standards of performance and threatened to let its certification lapse so another organization can take over the area.”
Kumer suggests that regions of the country ought to be required to achieve certain donation levels before being allowed to participate in national organ sharing. That makes complete sense. Instead, transplant patients in Missouri and Kansas — there are 120 on the KU health system’s liver waiting list alone — are in essence being punished for living in a donation-rich environment.
“I think so,” says Kumer, who’s had to tell transplant patients that they’ve likely been bumped further back in line. “They get scared. They don’t want to die.”
Here’s how arbitrary and life-and-death this rule change is: When The Star talked with Dr. Kumer Tuesday afternoon, he was about to perform a transplant on a cancer patient who, by sheer luck, was matched with a liver on Monday — only hours before the new rule went into effect. If the liver had become available just a day later, the man would still be on the waiting list, most likely further back in line.
Is that the live-by-whim situation you want you or your loved ones in?