As Thousands Wait For Transplants, Medical Centers Fight To Keep Livers Close To Home

toggle caption Neil Brake/Vanderbilt Medical Center

Updated May 17, 2019, 6 p.m. ET

A lawsuit over how to distribute donated livers to dying patients took some startling turns this week.

The United Network for Organ Sharing is returning for the moment to an earlier system for distributing donated livers which it had changed on Tuesday, after a federal court in Atlanta threatened to hold the agency in contempt.

"Reprogramming this complex and important system is not a simple process, and will take time to execute," UNOS spokeswoman Anne Paschke said in a written statement Friday afternoon. "However, it is underway now and UNOS will have a greater sense of when the work will be completed next week."

UNOS is a national nonprofit that has a federal contract to manage the U.S. organ transplant system. It began revising the system for distributing livers in 2012.

There are 13,489 U.S. patients waiting for a liver transplant, according to UNOS. In 2018, 1,176 people died on waiting lists.

The new allocation 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.

The plan is meant to resolve regional inequities that developed in recent decades. Wait lists in New York, Los Angeles and San Francisco have grown much longer than in most of the Midwest and South, where organ donation rates are higher and more people die from strokes, which makes them good donor candidates.

But major transplant centers in the South and Midwest have resisted the change, and filed a lawsuit in late April to block implementation.

Those centers lost their bid for a temporary restraining order on May 13, and the new system went into effect the next morning. Instead of focusing on 11 priority regions, the new plan generally gives the available liver to the most severe patient within 500 nautical miles — meaning a liver donated in Lexington, Ky. could end up at Johns Hopkins in Baltimore, Md.

After the initial loss, the transplant centers decided to appeal on the issue of the restraining order, and U.S. District Judge Amy Totenberg told UNOS to "cease and desist implementation" of its new policy.

When UNOS didn't take immediate action, Judge Totenberg threatened contempt on Friday, prompting UNOS to act. The agency has said it could take several weeks to get back to the old regional policy, but stated that in the meantime livers will continue to be matched with recipients.

A hearing is scheduled Tuesday for the parties in the lawsuit to update the court.

UNOS has always maintained that the new system would save more lives.

"This is good news for the sickest candidates waiting for livers," said Brian Shepard, CEO of UNOS, in an interview with NPR. He predicted 100 additional lives per year would be saved by more efficient movement of the livers between regions. "Targeting the livers towards those folks who are really the most critically ill will result in fewer people dying on the waiting list."

Saved twice

Last March, Karen Wells drove her ailing husband from their home in Lexington, Tenn., to the busy emergency department at Vanderbilt University Medical Center in Nashville. Karen was praying for a miracle. Jeffrey Wells was so jaundiced, he was almost unrecognizable.

"He was dark, very dark," Karen recalls. "There was no whites to his eyes. They were orange."

The doctors told the family it was time to make funeral arrangements for Jeffrey. 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. Two livers was a long shot.

Enlarge this image toggle caption Anne Rayner/Vanderbilt University Medical Center Anne Rayner/Vanderbilt University Medical Center

But fortunately, Wells lives in Tennessee, where the waiting list is notably shorter than in 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.

'Turf battle'

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.