When a liver is available for donation anywhere in the country, there are federal rules that dictate who gets it. The sicker you are, the sooner you get one.
Those rules were updated this year and they’re supposed to help more folks get that life-saving transplant. But the new rules might not make things better for everyone.
Liver transplant waitlists are getting longer each year in New Mexico and across the country.
Joseph Scalea is a transplant surgeon in Baltimore. Sometimes he does up to 100 organ transplants in a year.
“The reason the list is increasing so much is people are getting older, people are getting better care in the community, people are living long enough to get a transplant,” Scalea explained.
And it’s UNOS, the United Network for Organ Sharing, that makes the national rules for who gets an organ.
“They implemented some new guidelines to try and reduce the likelihood of not getting a liver because of where you live,” Scalea said.
Those new rules are pretty complicated. It might get confusing for a bit, but stay with me, you’ll get it.
When you need a liver transplant, you have to get on a waitlist at a transplant center. Say you’ve got two months to live and you’re waitlisted at a transplant center in Las Cruces. Another woman has 12 months left to live, and she’s waitlisted in Albuquerque.
One day there’s a donor liver available in Santa Fe. That liver will go to you even though you’re further away because you have less time left.
But if you and the woman in Albuquerque are equally sick, she would get the liver, because she’s closer.
UNOS said in a statement that the new rules are supposed to correct inequities – some people on waitlists had had advantages or disadvantages because of where they lived. The rules are on hold right now under a court order after coming under fire from critics.
Shimul Shah really doubts that the new rules will fix anything.
“It’s gonna hurt the patients,” he said.
Shah is the chief of transplantation at the University of Cincinnati Medical Center and an expert in liver transplants.
“If you’re listed at a smaller transplant program that’s close to home because that’s the only place you can get access to, you may not ever get the chance to get transplanted,” he explained.
Shah said the new rules are supposed to help folks in densely populated areas, not places where everyone is spread out.
“One population that’s really gonna get hurt is the poor and the rural patients.”
So, back to the scenario where you’re on the waitlist for a liver in Las Cruces. What if there are 10 people on the list, they’re all sicker than you, and they’re all in Albuquerque? You might never get a liver from Santa Fe.
Now, think about what that means on a national scale. The odds of rural patients getting a liver could shrink even more under the new rules.
And if things didn’t seem bleak already, those New Mexico liver transplant centers in that hypothetical scenario – they don’t exist. You can’t get a new liver transplant anywhere in New Mexico. Patients have to go to places like Colorado and Arizona. Then they have to deal with travel, recovering away from home for weeks, and spending money every step of the way.
So, what if New Mexicans didn’t have to go out of state for a liver transplant? What if we had a liver transplant center here, say in Albuquerque? Turns out, we did, for about 5 years.
Michael Davis was a resident at the University of New Mexico Hospital at the time. Now he’s the head of its kidney transplant program. He showed me around the hospital’s transplant wing, where the liver operations used to happen.
“This is Transplant Services, so this is where all the day-to-day administrative activity goes on for transplant,” Davis said during the tour.
The last time the rules changed this drastically was in 1999 and it basically caused the closure of UNM’s liver transplant center. That rule change split the country into regions, and New Mexico was grouped with Arizona, California and some other states.
California’s population dwarfed pretty much any other state in the region. Davis estimates they were getting around 50 percent of donor livers.
“It really affected our state, as it did a lot of states,” he said. “The number of livers decreased over time.”
So the UNMH program shut down in 2000. New Mexico was the only state to lose the only transplant center it had.
“I think had that allocation policy not changed – although we wouldn’t be a super high-volume center – we would still be able to offer that service here,” Davis said.
UNM Hospital, Presbyterian Healthcare Services and Lovelace Health System all say they don’t have any plans to start a liver transplant center any time soon.
In the last part of our series, "Too Little, Too Late: Waiting For A Liver In N.M." we’ll look at some of the ways state officials and medical professionals are looking to prevent people from needing liver transplants in the first place.
Rashad Mahmood and Lissa Knudsen did the data analysis, graphics and maps for this series using tools from the New Mexico Community Data Collaborative.
Support for KUNM’s Public Health New Mexico project comes from the W.K. Kellogg Foundation, the McCune Charitable Foundation, and from KUNM listeners like you.