At 7:51 a.m. Tuesday, after a federal judge weighed in the night before, the national rules governing distribution of donated livers to dying patients became a bit more equitable. Or at least, that was the intent of the United Network for Organ Sharing, which began revising the system in 2012.
The new plan, years in the making, changes the system from one based on liver availability within 11 geographic regions to one that gives more weight to the medical status of the critically-ill patients waiting for transplant.
There are 13,489 U.S. patients waiting for a liver transplant, according to UNOS. In 2018, 1,176 people died on waiting lists.
But major transplant centers in the South and Midwest have resisted the change, even filing a lawsuit in late April to block implementation.
A federal court in Atlanta granted a few weeks' delay in late April, but late Monday night dismissed the plaintiffs' request to keep the policy from taking effect. The transplant centers that sued — which include Emory University Hospital in Atlanta, Ga., Vanderbilt University Medical Center in Nashville, Tenn., and Indiana University Health — plan to continue their court challenge, even as the new policy goes into effect.
"This is good news for the sickest candidates waiting for livers," says Brian Shepard, CEO of UNOS, which predicts 100 additional lives per year will be saved in the U.S. "Targeting the livers towards those folks who are really the most critically ill will result in fewer people dying on the waiting list."
But the benefits won't be evenly spread.
Karen Wells drove her husband from their home in Lexington, Tenn., to the busy emergency department at Vanderbilt University Medical Center in Nashville last March, praying for a miracle. He was so jaundiced he was almost unrecognizable.
"He was dark, very dark," she says. "There was no whites to his eyes. They were orange."
The doctors said it was time to make funeral arrangements. His first liver transplanted in 2013 was failing, and the only way he would survive was a second liver transplant.
"To get one, it's a miracle, honestly. To get two?" Karen remembers thinking at the time. It was a long shot.
But fortunately, Wells lives in Tennessee, where the waiting list is notably shorter than big cities on the coasts. Vanderbilt has 171 patients on its list. For comparison, the current waitlist for livers at the University of California's San Francisco Medical Center numbers 761 patients. But both hospitals perform roughly 140 liver transplants each year.
For decades, livers were mostly harvested and donated within the boundaries of 11 geographic regions — usually the recipient patient lived no more than a state or two away. But under the new rule, a liver must be matched with the most critically-ill patient within 500 nautical miles (575 miles). That means an organ donated in Lexington,Ky., could end up in Baltimore, Md.
That seems unfair to transplant centers in less populous places in the South and Midwest, where organ donation rates are higher. More people sign up to donate in those regions. But transplant experts also point out that residents of both regions are more likely to die in ways that allow their organs to be used, such as from a stroke.
Those old regional discrepancies meant some patients in high-population regions would have to wait longer for livers, getting sicker and closer to death in the process. In addition, patients with resources could game the system. When he needed a liver transplant, Apple founder Steve Jobs bought a house in Memphis so he could join the waiting list in Tennessee, which was shorter than the list in California.
"He didn't do anything illegal ... but he took advantage of a system because he was able to financially," says Dr. Sandy Florman, transplant director at Mount Sinai Hospital in New York City.
Mount Sinai's waitlist for liver transplants is among the longest in the country, so its patients will probably benefit from the new rules. But Florman says he's been disappointed to see the debate turn into a "turf battle."
"These are very profitable hospitals, and people are afraid that their programs will not do well," he says.
According to one estimate from consulting firm Milliman, each liver transplant results in more than $800,000 in billed charges. If Vanderbilt, for instance, loses a considerable number of procedures due to the rule change, the hospital might have to downsize the program, says Dr. Seth Karp, Vanderbilt's transplant director.
But Karp worries even more about the impact on smaller transplant centers.
"If the program in Mississippi closes, if the program in Iowa closes because of this, that's a real national public health problem," he says.
Karp doesn't buy the reasoning that more lives will be saved. He predicts more livers will go to waste.
That's because every minute counts when deciding where to send a liver, which can only last outside the body for 10-12 hours. More hospitals will now have to weigh in when a liver becomes available.
"The more complex the distribution scheme is, the more chances you have of not using the liver," Karp says.
The transplant centers that sued say they plan to keep up their fight in the courts. UNOS' Brian Shepard says it will monitor the policy and "make adjustments if there are unintended consequences."
For patients and donors, the question is more straightforward. Is a donated organ for someone nearby, or for anyone who could use it?
Jeffrey Wells, the patient who was near death at Vanderbilt last year, benefited from the old system. Because Region 11 had a shorter waiting list compared to other parts of the country, he received a second liver transplant. But he still maintains that he supports the new rule.
"If I was a donor, I wouldn't necessarily say if they don't live in Tennessee, they're not going to get my liver," Wells says. "If somebody's dying, I'd be willing to give my organ to whoever it is, not matter where they live."
This story is part of a reporting partnership with Nashville Public Radio, NPR and Kaiser Health News.
AUDIE CORNISH, HOST:
A new system for allocating donated livers to sick patients went into effect this morning. The intent is to make organ transplants more fair nationwide, but transplant centers in the South and Midwest are fighting it. Blake Farmer of member station WPLN in Nashville explains why.
BLAKE FARMER, BYLINE: Karen Wells wheeled her husband into the ER at Vanderbilt University Medical Center last year, praying for a miracle. He was so jaundiced he was almost unrecognizable.
KAREN WELLS: He was dark - very dark. I mean, there was no whites to his eyes. They were orange.
FARMER: The doctors said it was time to make funeral arrangements. His body was rejecting his first liver transplant.
K. WELLS: It's a miracle, honestly, to get two...
FARMER: Two livers for one patient. It was a long shot, but fortunately, Wells lived in Tennessee, where the waiting list was shorter than on the East and West coasts. For decades, livers were donated to patients nearby, no more than a state or two away. But under the new rule, a liver must be matched with the most critical patient within 500 miles. That means a liver donated in Nashville could end up in Chicago. Brian Shepard leads the agency that oversees organ sharing. He says the new rules should save lives.
BRIAN SHEPARD: Targeting the livers towards those folks who are really the most critically ill will result in fewer people dying on the waiting list.
FARMER: But that seems unfair to transplant centers in the South and Midwest, where organ donation rates are higher. More people there sign up to donate, and they also die more often in ways that allow their organs to be used, like from a stroke. The old regional discrepancies meant some patients could game the system. When he needed a liver, Apple founder Steve Jobs even bought a house in Memphis.
SANDY FLORMAN: He didn't do anything illegal, but he took advantage of a system because he was able to, financially.
FARMER: Sandy Florman is transplant director at Mount Sinai Hospital in New York City, with one of the longest waiting lists in the country.
FLORMAN: The problem is it's turned into a turf battle. These are very profitable hospitals, and people are afraid that their programs will not do well.
FARMER: A dozen transplant centers sued to stop the policy from taking effect, including Emory, University of Michigan and Vanderbilt. But all they got was a few extra weeks. Seth Karp is Vanderbilt's transplant director. He predicts unexpected delays because many more hospitals will now have to weigh in when a liver becomes available.
SETH KARP: The more complex the distribution scheme is, the more chances you have of not using the liver.
FARMER: Karp estimates Vanderbilt will perform 20% fewer transplants and may have to downsize. And he worries about smaller centers.
KARP: The - if the program in Mississippi closes, if the program in Iowa closes because of this, that's a real national public health problem.
FARMER: I asked Jeffrey Wells, the patient who was near death at Vanderbilt last year, what he thought. He did get that second liver transplant, benefiting from the shorter waiting list.
JEFFREY WELLS: And I'm eternally grateful.
FARMER: Wells actually supports the new rule.
J. WELLS: I mean, I'm like this. When a person decides to be a donor, I don't feel like they're becoming a donor to save one particular person's life.
FARMER: But the transplant centers that sued say they'll keep up their fight in the courts. For NPR News, I'm Blake Farmer in Nashville.
CORNISH: And this story is part of a reporting partnership between NPR, WPLN and Kaiser Health News. Transcript provided by NPR, Copyright NPR.