When Gil Alicea was diagnosed with liver cancer and told he needed an organ transplant, doctors gave him some blunt advice: “Get ... out of New York.”
Alicea needed a liver fast. But the wait for an organ can be excruciatingly long on the East Coast. So in 2010, Alicea put himself on the wait list at the University of Kansas Hospital, where patients often receive livers quicker, before their health goes into serious decline.
He got the call from KU in just eight weeks. A chartered flight made it to Kansas City just in time for the transplant operation. “He woke up literally singing,” wife Barbara Zitwer recalls.
But the cruel reality for most people with failing livers — those who can’t afford to charter a plane — is that your chances of survival can depend on where you live.
The stark disparities among regions of the country, where some wait months while others, if they survive, wait years for a liver, has kept a national debate simmering over how best to give all patients a more equal chance.
That debate appears ready to boil.
A committee report by two organizations responsible for managing the nation’s transplant system has been circulating through the transplant community this summer. It suggests ways to equalize access to donor livers across the country.
Redesigning the distribution system would mean more donor livers would end up being flown to distant transplant hospitals and patients on average would be somewhat sicker when those livers were transplanted.
But overall, the changes would save more than 550 lives over five years.
The report, which could lead to proposed policy changes early next year, is being applauded by many in the transplant community. But it’s raising red flags at some transplant programs, like KU’s, that are doing well under the current system.
“We know we have supply and demand issues. We know we can’t keep everyone alive. But this is just going to move organs around,” said Richard Gilroy, medical director of liver transplantation at KU. “Ultimately, in five years you’re not going to change anything.”
As with other organs sought for transplantation, demand for livers far outstrips the supply. About 12,000 patients are added to liver transplant waiting lists each year. The number of donors has remained fairly constant at roughly 7,000 per year.
KU Hospital’s transplant program benefits from the current system, which generally offers donor livers first to transplant hospitals in the region where the organs were collected. And the number of people who donate their organs varies drastically by geography.
People in KU’s region are more likely to become donors than are people in any other part of the country. That helps KU Hospital boast an average wait time for a liver of less than six months. Nationally, patients average a 14-month wait, according to the hospital.
The changes to the system that are under discussion would broaden access to livers for more hospitals. Instead of the current system of 11 regions for distributing livers, a system of eight or even four mega-regions could be created, with sicker patients receiving priority. Doing that would spread the organs around to areas that previously got fewer.
The changes are championed by surgeons on the East and West coasts, where livers are in shortest supply.
Fady Kaldas is a liver transplant surgeon at the Ronald Reagan UCLA Medical Center in Los Angeles. He’s seen as many as six patients die in a single day in the hospital intensive care unit as they waited for a liver transplant.
“You look at the anguish on their families’ faces and you know there must be something unethical in the way we share organs,” Kaldas said. “It has gotten so lopsided now. It is unconscionable to let the current system go unaddressed.”
Kaldas estimated that his patients wait an average of two to three years before receiving a liver. Out of necessity, his program has learned how to transplant sicker patients successfully. Programs like that at KU can learn to transplant these patients, too, he said.
“If you’re willing to transplant the sicker patients, you’re still going to get the livers,” Kaldas said. “If you, as a transplant center, are uncomfortable doing sicker patients, that’s a center problem.”
Gilroy of KU doesn’t buy that argument. “All we’re doing is making people sicker and giving them a lower probability of surviving,” he said.
What transplant regions should be doing is recruiting more donors, Gilroy said. “They’re trying to fix the end problems rather than the problems that caused it.”
KU Hospital is in a transplant donor region that includes Kansas and Missouri along with Colorado, Iowa, Nebraska and Wyoming.
About 82 percent of the patients that hospitals in this region identified as eligible as organ donors — typically victims of accidents and others who have suffered brain death — actually became donors last year, according to national data that KU compiled. That’s the highest rate among the 11 regions.
New York state’s region, which also includes western Vermont, did the poorest with only 55 percent becoming donors.
If all the regions did as well as the one that includes Kansas City, there would have been an extra 993 organ donors nationwide in 2013, KU Hospital calculated.
It’s not clear why some parts of the country supply more donor organs than others. Willingness to donate organs varies among ethnic groups, for example.
But Gilroy gives a lot of credit to local organ donor organizations, like the Midwest Transplant Network, for educating the public and building relationships with area hospitals.
“It all comes down to all the players in the community working together,” said Keith Anderson, executive director of Gift of Life, an Overland Park-based organization that brings donor families and transplant recipients into area high school classrooms to raise awareness of organ donation.
Scott Dykes of Excelsior Springs, who received a liver transplant at KU, isn’t keen on the idea that a new distribution system might give his hospital less ready access to organs.
Dykes, 48, has a rare blood type, which made it harder to find an appropriate donor liver. His wait stretched to about nine months.
“I know everybody has a need,” he said. “But if Midwest organs were put on a list nationwide, I probably would not be here today.”
Zitwer, a dedicated New Yorker, doesn’t like the idea of Kansas becoming what she describes as “an organ farm” for the East and West coasts.
“The problem is there aren’t enough organ donations in New York,” said Zitwer, whose husband, Alicea, 59, is thriving now as a social worker in the South Bronx. “There’s not enough outreach in New York, and for that matter, the East Coast, for organ donations.”
“It’s the worst idea,” she said, “farming organs from the middle of America because they don’t want to do the work.”
Zitwer gets no argument from Leona Kim-Schluger, associate director of the liver transplant program at Mount Sinai Hospital in New York, about the need to increase organ donations.
“I admit it. I totally admit it. New York could do better,” she said. “Nevertheless, sharing is better.”
Kim-Schluger is frank with her patients.
“I tell them you have to be really, really sick (to be transplanted) and if you want to, you have the option to go somewhere else,” she said.
Over the past couple of years, Kim-Schluger has sent more than two dozen patients to other parts of the country, where they succeeded in getting livers.
“If my kid needed a liver, I’d sell my house and all my property and go someplace where my son could get a liver,” she said. “But who’s going to help the person who lives in a tenement? Their lives are just as important.
“We don’t want to fight with people in Kansas. Share a little bit better. That’s all we ask.”
To reach Alan Bavley, call 816-234-4858 or send email to firstname.lastname@example.org.