Our Organ Donation System Is Unfair. The Solution Might Be Too.

At any given time, there are about 13,000 people waiting for a liver transplant in the United States. Whether the cause is a virus, alcoholism or a bit of genetic bad luck, they’re all suffering while sick and scarred livers struggle to clean their blood. Over time, their intestines bleed. Fluid builds up in their legs and their chests. Their skin turns sallow. Confusion sets in. The only cure is to swap the old liver for a healthy one. Each year, about 8,000 people will get that chance. The rest will wait, getting sicker.

There are always more people who need a new organ than there are organs available. That’s true all over the country, but not every place has the same number of available organs. Some regions have more registered donors, which means how long you have to wait for a liver is partly determined by where you happen to live.

At the end of the month, that’s set to change. The organization that manages the national organ transplant system is trying to make the wait time for donated livers more equal nationwide. It might be a preview of what’s to come for all organ-donation systems, and it’s proving to be controversial. It’s created factions among transplant surgeons. Senators have gotten involved. At least one state has proposed legislation to keep organs donated by its citizens within state borders. It’s a fight over the definition of fairness, experts say, where a seemingly simple effort to reduce geographic inequity in organ donation could end up exacerbating even bigger inequities in health care access.

Organ donation is good and kind, but it isn’t fair. For a healthy organ to save someone’s life, another family has to have the worst day of their lives. To get a lung or a heart or a liver, somebody has to die — ideally while they are young enough that the donated organ isn’t on its last legs.

One of the best ways to do that is to get more people to agree to become organ donors before something bad happens, said David Fleming, president of Donate Life America, a nonprofit that works to increase organ donation nationwide. That way the decision is already made and not left up to grieving, shocked families. But the rate at which healthy Americans choose to sign up as potential organ donors varies a lot from state to state. In some states, like Montana and Alaska, nearly the entire adult population is registered. Others, like New York and Mississippi, hover at less than 40 percent.

That disparity matters because, historically, the national system of determining who gets a donated organ has been deeply regional. There are 58 Organ Procurement Organizations, nonprofits that handle the process of talking to families, coordinating with hospitals and setting up the movement of an organ from one body to another. Each of those organizations has a geographical area it covers. The United Network for Organ Sharing, a private nonprofit that contracts with the federal government to manage the national organ transplant system, traditionally uses those boundaries as part of determining which patients on the waiting list get first crack at an organ. When a donor dies, the sickest patients in the same OPO have first dibs, essentially.

There are, obviously, problems with this system, said Brian Shepard, CEO of UNOS. Not only does it put patients in states with higher donor-registration rates at an advantage, it’s also drawn up in a pretty arbitrary way. For example, Iowa and Nebraska each have their own OPOs, but both states have a county or two covered by the other’s OPO. Another OPO covers all of Kansas and an odd chunk of western Missouri that’s roughly shaped like a pair of pants with a lot of thigh gap. “Texas has OPOs that have non-contiguous pieces,” Shepard said.

It’s the kind of seemingly random inequality that ends in a lawsuit. Last July, six patients on the liver transplant waiting list sued UNOS and the federal Organ Procurement and Transplantation Network, calling the policy illegal and inequitable. Those patients were from New York, California and Massachusetts. New York and California both have comparatively low rates of donor registration, and both are in regions that have longer wait times than parts of the Midwest and South.¹ For instance, a patient with Type B blood who was added to the registry between 2003 and 2006 waited a median of 1,223 days for a new liver in the New York region and a median of 303 days in the region that includes Kansas. If you’re a New Yorker, that doesn’t seem very fair.

The lawsuit is still active, but it has already pushed UNOS toward changes it had long been considering, said Keren Ladin, who is a professor of public health and community medicine at Tufts University and has published research on geographic disparities in liver distribution. Potential organ donors — people who have signed up to be on the registries — aren’t evenly distributed, but maybe organs could be.

To do that, UNOS came up with a new system that will be put into action on April 30. Under the new rules, patients get first priority for newly donated livers if they are in danger of imminent death and live within a 500-mile radius of the deceased donor — OPO borders be damned. If there aren’t any patients within 500 miles who are that sick, then the livers will be offered to the next-sickest patients within a 150-mile radius. Then those in a 250-mile radius. Then 500. That could mean a patient in New York would suddenly have access to a liver from Philadelphia, which under the OPO system would be off-limits to the New Yorker but could go to a patient from West Virginia.

But just like some New Yorkers and Californians thought the old system was unfair, people from states like Missouri and Iowa see unfairness in the new system. In January, 22 senators signed an open letter to the Department of Health and Human Services demanding answers about how the new policy would affect rural communities. In February, the Kansas state legislature introduced a bill that would allow organ donors to specify that they want their body parts to go only to in-state recipients. It has the backing of doctors at the University of Kansas Medical Center’s liver transplant center.

And that, Ladin said, also makes sense because the new plan really could be unfair. Kansas’s health care infrastructure is already inferior to New York’s. Taking its organs out of the state would only exacerbate the Kansas system’s failings.

And those inequities in health care begin with the organs themselves. Donor registration matters, but donor registration isn’t really the thing that creates donors. Deaths do. “Donors get created because of poor access to care: strokes, heart attacks, bad roads,” said Richard Gilroy, who is medical director of liver transplantation at Intermountain Healthcare in Salt Lake City and was on the UNOS liver committee that ultimately voted for the new rules, although he opposes the rule change.

Look at it this way: Kansans may be generous with their organs — 68 percent of them are registered donors. But Kansas also has a higher rate of stroke deaths than New York does, and New York has a lower rate of accidental deaths than Kansas. New Yorkers have a longer wait time for organs partly because they’re less likely to die of the kind of misfortunes that turn registrants into donors.

Moreover, residents of states with better health care systems — like New York — have a greater likelihood of being diagnosed and listed as needing an organ donor to begin with, Gilroy said. And New York has more comprehensive Medicaid coverage than Kansas does, which also means that there are people who can afford to get a liver transplant in New York but couldn’t in Kansas. “Part of the workup is a wallet biopsy,” Ladin said. Patients have to prove that they can afford the drugs needed after the operation. “So already a disparity exists in states with a weaker safety net,” she said. Ultimately, despite the shorter transplant waiting list, Kansans are more likely to die from liver disease than New Yorkers are. To Gilroy, that makes the change look less like a leveling of wait times and more like redistributing health care from people who already have less to people who already have more.

And this is what complicates the fight over liver distribution: There’s more than one thing that’s unfair about the system. That frustrates both Ladin and Fleming, who told me that they see good arguments on both sides of a gaping divide that’s only likely to get bigger because other organ transplant systems are on track for similar changes. Regardless of who is correct here, the bigger problem is that the changes are just shuffling organs around — altering which patients get a liver, not increasing the number of patients who get one. Without that, they said, there’s always going to be someone who waits, and dies.