Who deserves a liver? Officials try to make organ transplants fairer

His belly swollen, his energy flagging, 45-year-old Jorge Perez Remache waits in his Queens, N.Y., apartment for word that his turn has come to receive a lifesaving liver transplant. Though he has suffered from cirrhosis for 10 years, the chance of that happening is virtually zero.

A thousand miles south in tiny Morven, Ga., Katryna Grisson— equally sick, just three years older and, like Perez Remache, on Medicaid — awaits the same miracle. Her odds are substantially better, however, because the ratio of available livers to people who need them is more favorable in the southeast.

“Basically, it’s not fair that my dad has to wait until he gets sicker and sicker,” said Alex Perez, 22, Perez Remache’s son. “What’s the point of getting [a liver] when you’re sicker? Before they find a liver, he’s dead already.”

Under a recently proposed plan, that could change. The people who control transplants in the United States are preparing to consider a way to address the decades-old geographic disparity in liver allocation. The plan would alter how the precious organs are distributed and could shift hundreds of them across state and regional borders.

How to distribute organs is the ultimate life-or-death decision, one that has divided the liver transplant world into feuding camps for 15 years: those who favor the current system and those who claim it costs lives. The conflict has sparked accusations of manipulation of rules, led to lobbying in Congress and prompted more than 60 proposals, all of which have been abandoned.

Behind the wrangling over patient care is the fact that transplants provide big money to hospitals. A liver transplant is one of the most expensive surgical procedures, costing several hundred thousand dollars, much of it reimbursed by private insurance, Medicare or Medicaid. A secure supply of livers is critical to maintaining a lucrative program.

“This is so difficult, the amount of passion around this is really daunting,” said Julie Heimbach, chairwoman of the committee that has proposed the latest revised rules. “You think you’ve come up with something that will be good for the whole country, and then you have someone in South Carolina losing their mind over it.”

There are far too few livers donated every year for the people who need them. Last year, 7,841 livers from deceased donors were transplanted in the United States, while another 14,000 people with various liver diseases remained on the national waiting list. More than a thousand people on the list die every year.

The new proposal is complex, but the main point of conflict is that it would allow some transplant centers to reach across current district lines to gain access to livers they cannot obtain under current rules. That will create more competition for the organs and alter the way they are distributed, especially in the northeast.

Because of factors that affect both supply and demand, access to livers varies dramatically from place to place.

In Region 9, for example, which includes New York, just 327 livers were donated in 2016, continuing a pattern of meager procurement that goes back decades. In Region 3, which includes the Deep South and Puerto Rico, 1,336 livers were obtained from deceased donors, according to the United Network for Organ Sharing, the nonprofit that coordinates organ transplantation.