His belly swollen, his energy flagging, 45-year-old Jorge Perez Remache waits in his Queens 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, however, are substantially better, 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, Perez Remache’s 22-year-old son. “What’s the point of getting [a liver] when you’re sicker? Before they find a liver, he’s dead already.”
Under a 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 livers 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.
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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, chair 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 remained on the national waiting list with various liver diseases. More than a thousand people die on the waiting list 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.
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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 (UNOS), the nonprofit organization that coordinates organ transplantation.
UNOS divides the country into 11 regions for liver distribution, a patchwork that developed as liver transplantation grew after the first successful surgery in 1963.
To accurately compare which patients are sickest and deserve priority, UNOS created the Model for End-Stage Liver Disease (MELD) score after Congress demanded that it stop using waiting time as its only metric.
Since 2002, people have been placed on lists at the nation’s 143 liver transplant centers based on this score, which is derived from blood tests that indicate disease progression. The higher the score, the sicker the patient.
When scores are compared across regions, the disparity seems obvious. In 2016, the median MELD score at time of transplant ranged from 20 in Indiana to 40 in the Los Angeles area. In other words, it's much more difficult to find a liver in Southern California.
“At 35, you are in the ICU knocking on death’s door, loudly. You’ve got one foot in the grave,” said Ryutaro Hirose, a transplant surgeon at the University of California at San Francisco, where the liver shortage is severe. “At 25, you’re knocking around at home.”
Using these scores, an organ is first offered within the local district and region where it was donated, before it can be distributed to other regions if there is no match between donor and recipient.
That’s about where agreement between liver haves and have-nots ends.
Sander S. Florman, director of the Recanati/Miller Transplantation Institute at Mount Sinai Hospital in New York, where Perez Remache is listed, said the status quo cannot continue because of the disadvantages it imposes on people like his patient.
“I don’t care what the model is. The model can be a circle, a triangle, a neighborhood,” he said. “The point to me is that two people who are equally sick should have equal opportunity to get a liver.”
In addition to its comparative shortage of donor livers, New York and other urban areas have populations with higher rates of hepatitis C and fatty liver disease, increasing the need, he said. In San Francisco, Hirose said, a large Asian population, which is more prone to liver disease, drives up demand.
On the supply side, Regions 11 and 3 benefit because they cover most of the Deep South “stroke belt” — where higher rates of obesity, high blood pressure and diabetes lead to fatal strokes, leaving donors with intact livers. Many Southern states also have above average death rates from traffic accidents.
But none of that explains why the Philadelphia area, just 100 miles from New York City and also a large metropolis, procures many more livers for its transplant patients, said David S. Goldberg, a hepatologist at the University of Pennsylvania’s Perelman School of Medicine, who has studied the liver disparity.
The main issue, Goldberg said, is that New York-area nonprofit groups charged with recruiting organ donors do a poor job compared with their counterparts in other parts of the country.
These “organ procurement organizations” (OPOs) want to gain access to livers elsewhere rather than doing the hard work of convincing people to sign up as organ donors or persuading families to allow a donation after death, he contended.
“The first and foremost priority is holding areas and OPOs accountable for subpar performance,” Goldberg said.
To compensate for their organ shortage, Goldberg and others said, some hospitals in the New York region and elsewhere artificially boost some patients’ scores, by abusing “exception points” designed for people with certain diseases that might kill them quickly. That hurts the chances of other sick people whose transplant panels don’t engage in the practice.
“It’s grade inflation,” Goldberg said. “You can say the MELD score at transplant is higher than other parts of the country. But you cannot say their patients are sicker.”
Regional review boards are supposed to prevent abuse of exception points. But some doctors have complained that some boards are too permissive. A national review board will take over the task in January in an attempt to standardize the system.
At least one study shows that poor and rural patients already face greater chances of dying while waiting for transplants. Raymond J. Lynch, an assistant professor of transplant surgery at Emory University in Atlanta, said that a plan that moves more livers toward urban areas will exaggerate that effect.
“We are not the ‘haves,’ he said. “We are the hanging on. And the people here are hanging on because they have relatively good access to the organs.”
Those on Medicaid face another obstacle: State reimbursements differ, and recipients cannot go out of state for their transplants. Grisson and Perez Remache, for example, must get their transplants in Georgia and New York, respectively.
People with means often register at multiple transplant centers, which is how Steve Jobs, who lived in California, received a liver in Tennessee.
Wayne Cooper, a retired obstetrician from McLean, Va., who is awaiting a transplant, said he is looking at three transplant centers in North Carolina, Washington and Baltimore because he can get to any of them quickly and his private insurance will cover the surgery.
“The main reason I’m going [to Duke University Medical Center] is it’s a different region than Georgetown,” he said.
As she waits in Georgia, Grisson, whose liver is under attack from an autoimmune disease, said she suffers from fatigue, jaundice and intense itching that "feels like ants are stinging you all over." She prays for a liver every day.
“I pray, yes, I do,” she said. “I also understand that somebody’s got to lose their life for me to live. That’s going to take away someone from another family.”
Over the past five years, UNOS’s liver transplant committee has looked at 63 alternatives and 630 simulations of possible results. Last December, the idea of consolidating the 11 districts into eight was withdrawn without a vote because of intense opposition from numerous regions.
The current proposal is more modest. It would allow livers to be shared within 150 nautical miles of donor hospitals, which would foster some movement of livers across district lines. It also would keep more organs within the donor’s local area and region before they are offered to people in other parts of the nation.
UNOS said that, taken together, the two ideas would increase sharing without harming existing liver distribution very much. A vote could come as soon as December.
“Will this be the exact model? Maybe,” Heimbach said. “Maybe it will be a variation of this. I’m optimistic that we’ll get there if we just keep going.”