Organ Transplant System ‘in Chaos’ as Waiting Lists Are Ignored

By 15, Marcus Edsall-Parr had been waiting most of his life for a new kidney, and he knew the drill. Three days a week in exhausting dialysis sessions. No playing sports. No eating his favorite foods. And in nearly a decade on the transplant list, no luck getting an organ.

Then, last spring, his doctor called. There was a perfect match.

For decades, fairness has been the guiding principle of the American organ transplant system. Its bedrock, a national registry, operates under strict federal rules meant to ensure that donated organs are offered to the patients who need them most, in careful order of priority.

But today, officials regularly ignore the rankings, leapfrogging over hundreds or even thousands of people when they give out kidneys, livers, lungs and hearts. These organs often go to recipients who are not as sick, have not been waiting nearly as long and, in some cases, are not on the list at all, a New York Times investigation found.

Last year, officials skipped patients on the waiting lists for nearly 20 percent of transplants from deceased donors, six times as often as a few years earlier. It is a profound shift in the transplant system, whose promise of equality has become increasingly warped by expediency and favoritism.

Under government pressure to place more organs, the nonprofit organizations that manage donations are routinely prioritizing ease over fairness. They use shortcuts to steer organs to selected hospitals, which jockey to get better access than their competitors.

These hospitals have extraordinary freedom to decide which of their patients receive transplants, regardless of where they rank on the waiting lists. Some have quietly created separate “hot lists” of preferred candidates.

“They are making a mockery of the allocation system,” said Dr. Sumit Mohan, a kidney specialist and researcher at Columbia University. “It’s shocking. And it’s going to destroy trust in the system.”

Patients can wait months or years for an organ as their health declines, rarely told where they sit on a transplant list and not knowing whether they have ever been skipped. They just don’t get the call that can mean the difference between life and death.

Over the past five years, more than 1,200 people died after they got close to the top of a waiting list but were skipped, The Times found. It is possible that their doctors would have decided the organ wasn’t a good fit for them, but they were denied a chance to find out.

One of those people was Corey Field, a Minnesota grocer who was 10th on a list for a liver when he was skipped in 2023. It was his last chance: He died two months later. His wife, Laura Field, was shaken after learning from The Times what had happened. It’s not that her husband was entitled to an organ, she said, but he had deserved a fair shot.

“Corey was not just a number in a database,” Mrs. Field said. “He was a good husband, father, grandfather, son, brother and a friend. His life mattered.”

More than 100,000 people are waiting for an organ in the United States, and their fates rest largely on nonprofits called organ procurement organizations. Every state has at least one, and they have government contracts to identify donors, recover organs and distribute them to patients.

Here’s how it works, using kidneys as an example:

The procurement organization is supposed to offer the organ to the doctor for the first patient on the list. Often, doctors say no, citing reasons like the donor’s age or the availability of the patient.

If that happens, the organization is supposed to keep ticking down the list until the organ is accepted. This process repeats about 200 times a day across the country, with a new list created for every donated organ.

Until recently, organizations nearly always followed the list. On the rare occasion when they went out of order and gave the organ to someone else, the decision was examined by the United Network for Organ Sharing — the federal contractor that oversees the transplant system — and a peer review committee. Ignoring the list was allowed only as a last resort to avoid wasting an organ.

Now, however, skipping patients is so common that UNOS and the committee are too overwhelmed to examine each case closely.

The leaders of procurement organizations acknowledged to The Times that they sometimes deviated from waiting lists, but said they did it to save lives.

They said there is an inherent tension in the transplant system. Procurement organizations, squeezed by the government to place more organs, rely on algorithms that can spit out imprecise match results. And hospitals, which are judged on patient outcomes, routinely decline potential matches. So organs deteriorate while doctor after doctor rejects them.

Skipping patients is a necessary, if imperfect, solution, they said.

“Expedited placement is problematic because it means that we’re not following the list that the patients and the public believe that we are, but it speaks to the desperation of making sure that organ gets transplanted into somebody,” said Dorrie Dils, president of the association representing most of the country’s 55 procurement organizations.

She and others said they break from the lists only to place lower-quality organs that have been repeatedly rejected. But, data shows, that is often not the case.

The Times analyzed more than 500,000 transplants performed since 2004 and found that procurement organizations regularly ignore waiting lists even when distributing higher-quality organs. Last year, 37 percent of the kidneys allocated outside the normal process were scored as above-average. Other organs are not scored in the same way, but donor age is often used as a proxy for quality, and data shows there is little difference in the age of organs allocated normally compared with those that are not.

And while many people in the transplant community believe ignoring lists is reducing organ wastage, there is no evidence that is true, according to an unreleased report by a group of doctors and researchers asked by the transplant system last year to study the practice.

Last week, after receiving a summary of The Times’s findings, the federal Health Resources and Services Administration, which oversees UNOS, told the contractor that procurement organizations should not be allowed to ignore waiting lists and ordered increased oversight.

The Times analysis also found that skipping patients is exacerbating disparities in health care. When lists are ignored, transplants disproportionately go to white and Asian patients and college graduates.

“We have violated our own principles. We have violated transparency, trust in the system,” Dr. Nicole Turgeon of the University of Texas at Austin told a crowd at the most recent American Transplant Congress, a large annual gathering.

“Everyone’s really trying to do the right thing, I honestly believe that. But we have a system in chaos.”

How a rare shortcut became routine

In 2020, procurement organizations felt under attack. Congress was criticizing them for letting too many organs go to waste. Regulators moved to give each organization a grade and, starting in 2026, fire the lowest performers.

They scrambled to respond. They assigned more staff to hospitals to identify donors, grew more aggressive with families and recovered more organs from older or sicker donors.

Those steps increased donations and transplants, dozens of employees said. Both hit record highs last year, when there were 41,115 transplants.

At the same time, the organizations increasingly used a shortcut known as an open offer. Open offers are remarkably efficient — officials choose a hospital and allow it to put the organ into any patient.

Here’s an example of how it works. In 2023, OneLegacy, the procurement organization in Los Angeles, learned of a donated heart and ranked potential recipients.

The eighth person on that list was Damon Gault. He was 55, ran a brewery in Northern California and, after decades of cardiac problems, had been hospitalized for months, hoping for a new heart.

Mr. Gault died six weeks later.

His fiancée, Jennifer Sakai, was stunned when The Times told her he had been skipped. “That’s not fair,” she said. “There’s a system in place to ensure that people have that opportunity, and they’re obviously failing.”

In a statement, OneLegacy said it had allocated the donor’s other organs and had less than 12 hours to find a recipient for the heart before the planned removal. It chose Keck because the hospital was already sending a surgeon to take the lungs. Keck said the patients at its hospital who were higher on the list were not good matches for the heart.

Historically, procurement organizations used open offers in only about 2 percent of cases, The Times found. Virtually all organizations now skip patients at least 10 percent of the time, almost always through open offers. A few do it more than 30 percent.

Some procurement organizations sidestep the list because they believe it helps them place more organs. But it can also help their bottom lines.

In 2021, the South Carolina procurement organization phased out its allocation team and handed the task to workers who were already managing donors, testing organs and helping with surgeries. As a workaround, three former employees said, executives created a spreadsheet with preferred doctors’ phone numbers.

If the employees were too busy to do allocation, they said, they were told to give open offers to those doctors.

“They’d tell me to get rid of the organs quickly, so I could be done,” said Aron Knorr, one of the former workers, who said the directive made him uncomfortable.

David DeStefano, chief executive of the organization, We Are Sharing Hope SC, said the spreadsheet was used only to save an organ at risk of going to waste. “We work very hard to try to get it transplanted in sequence,” he said.

Sharing Hope skipped patients more than 20 percent of the time last year, data shows.

Dr. Alghidak Salama, who led South Florida’s organization until August, said open offers were financially beneficial: When organizations distribute organs, they are paid a set fee by receiving hospitals, regardless of what costs they incur. Speeding up allocation saves money on staffing.

Dr. Salama said he disliked skipping patients. “You’re bypassing a human being,” he said. “That human being really needs that organ, and they’re high on that list for a reason. They need it more than the person down No. 6,000.”

Organizations find recipients for hearts, lungs and livers before taking them from the donor’s body, but kidneys are usually removed and tested before allocation. They remain viable on pumps for up to 48 hours. The average transplant is done after 20 hours.

But in recent years, several organizations have set shorter — and seemingly arbitrary — countdown clocks.

Mid-America Transplant, based in St. Louis, began requiring the use of open offers whenever kidneys hit 12 hours outside a donor’s body, which employees said was unnecessarily brief. Then leaders lowered the cutoff to eight hours. Then six.

At LiveOn NY in New York City, workers said that after five hours, they invited favored hospitals to identify their highest patient on the list for whom they would accept the kidney. The top offer won.

In interviews, the heads of both organizations defended their policies. They said that recent rule changes requiring them to offer organs to patients nationwide had created additional time constraints.

But the system still prioritizes nearby patients. UNOS analyses have found that the new rules have not dramatically changed how far procurement organizations have to transport organs.

Lenny Achan, of LiveOn, which has among the highest rates of skipping patients, said his organization’s practices had already been investigated and cleared by regulators.

Why some hospitals get preference

Of all the procurement organizations, data shows, one skipped patients at the highest rate during the last two years: Lifebanc in Northeast Ohio.

The reason, according to 10 current or former employees, is that Lifebanc uses open offers to steer organs to the Cleveland Clinic, a prestigious nearby hospital.

The employees said the pattern began a few years ago, after Lifebanc hired senior leaders who had worked at the Cleveland Clinic, and signed a contract paying the hospital for medical advisers. Several workers said that since then they had been instructed to give open offers to the hospital.

“We were expected to help out the clinic,” said Monalyn Kearney, who left Lifebanc last year because of ethics concerns. “Sometimes, we wouldn’t even pursue the organ unless they expressed interest.”

In a statement, Katie Payne, the chief executive of Lifebanc, said all procurement organizations bypass patients to offer organs to centers they believe are more likely to say yes. When told that another nearby transplant center, University Hospitals, accepts organs at a higher rate than the Cleveland Clinic, Ms. Payne said Lifebanc gives University Hospitals offers out of sequence, too.

The Cleveland Clinic said it did not control the allocation of organs.

The only procurement organization in Alabama, Legacy of Hope, gives open offers most often to the University of Alabama at Birmingham, records show. Though the hospital has an esteemed transplant program, two doctors there said it gets open offers because it has pressured Legacy of Hope, which operates out of the hospital, for more organs.

Legacy of Hope and the hospital denied that there was any pressure and noted the organization also gives open offers to many other centers.

Last fall, The Times observed a worker at Gift of Life Michigan giving an open offer to a Canadian hospital, Trillium Health, before any other center. The worker said that was the organization’s policy when it recovered lungs that might be difficult to place. UNOS regulations, however, require that organs be offered to patients at American hospitals first.

In a statement, Gift of Life said the worker had misunderstood and no such policy existed.

Hospitals are competing to gain favor with procurement officials. One doctor said his boss had visited every organization on the East Coast. Another said his hospital had agreed to accept lower-quality organs. An administrator said she had negotiated over payments for organ transport.

They all spoke on the condition of anonymity because they did not want to risk losing open offers.

Who is benefiting

Open offers are a boon for favored hospitals, increasing transplants and revenues and shortening waiting times.

When hospitals get open offers, they often give organs to patients who are healthier than others needing transplants, The Times found. For example, 80 percent of all donated hearts in recent years went to patients sick enough to be hospitalized, records show. But when lists were skipped, it was less than 40 percent.

Healthier patients are likelier to help transplant centers perform well on one of their most important benchmarks: the percentage of patients who survive a year after surgery. The government monitors that rate, as do insurers, which can decline to pay low-performing hospitals.

At least 16 hospitals have quietly created “hot lists” of patients to call when they get open offers. On one list obtained by The Times last year, from UVA Health, the first candidate for a kidney was a woman in her 60s who was healthier than many other kidney patients at the hospital, records show.

Eric Swensen, a UVA Health spokesman, said the list contained patients who had agreed to accept lower-quality organs.

Doctors elsewhere provided other reasons patients ended up on hot lists: They lived nearby and could be summoned easily; they had fewer health issues that could complicate a transplant; they were older and might not have time to wait their turn.

The field of transplants has always had ethical dilemmas and tough calls. Even when the list is followed, doctors choose when to accept organs, and bias can affect decisions.

Disregarding the list has worsened some disparities. White people make up 39 percent of the organ registry, data shows. They have a leg up even in the normal process: Last year they received 46 percent of transplants. But when the list was ignored and patients were skipped, they got 50 percent.

Other groups have benefited, too, data shows: Asian patients, men, college graduates and candidates at larger hospitals.

Dr. James Wynn, a surgeon and former president of the transplant system, said that unconscious bias had likely crept in. “We develop policies and procedures for a reason,” he said.

Where watchdogs fall short

Federal regulators have known since 2022 that more people were being skipped, according to meeting notes obtained by The Times. But until last week, they had done little to address it.

The U.S. Centers for Medicare & Medicaid Services monitors hospitals and procurement organizations. The Health Resources and Services Administration tracks the system overall. But for years, they deferred to UNOS.

Records show that when the system’s oversight committee reviews instances of bypassed patients, it closes more than 99.5 percent of cases without action, usually concluding that the organ was at risk of going to waste. In the last five years, the committee has never gone further than sending “notices of noncompliance,” the mildest action it can take.

“The oversight is almost nonexistent, and that’s been true basically forever,” said Dr. Seth Karp, a Vanderbilt University surgeon who served on the committee, which he noted is largely made up of transplant doctors and procurement officials policing themselves.

Dr. Richard Formica, a Yale University surgeon who is president of the transplant system, said the committee members were volunteers who did their best. He said it was difficult for them to determine the motivations behind out-of-sequence allocations.

Some procurement organizations complicate oversight by obscuring their open offers, according to current or former employees at 14 organizations.

Many said they phoned doctors directly, so the details of open offers were not documented in the centralized computer system. Several said they logged an offer in the system only if the organ was successfully placed, making the practice look more effective. Others said they always entered “time constraints” as the reason for skipping patients, even if that was false.

Because of this, it is impossible to gauge whether line-skipping prevents wasted organs. But data suggests it does not. As use of the practice has soared, the rate of organs being discarded is also increasing.

“If we were doing this and the discard rate was going down, then we could say: ‘Well, there are some trade-offs. It may introduce racial and socioeconomic inequities, but we should look at it,’” said Dr. Stephen Pastan, a transplant medical director at Emory University Hospital. “But that’s not what is happening.”

Marcus’s lost match

The kidney that could have helped Marcus Edsall-Parr was donated by a man in his 20s who died in Texas last April. It was in exceptional condition, records show.

Marcus’s doctors at University of Michigan Health, Michael Englesbe and Meredith Barrett, became excited. They had gotten to know Marcus and his parents, Drs. Kath Edsall and Alice Parr, both veterinarians. Marcus, who was adopted at age 5, had had kidney problems and developmental delays since infancy.

Marcus was rarely a match for transplants because testing suggested that his antibodies would reject almost any new organ. His doctors had declined other kidneys, determining they weren’t good fits. This was the most promising one yet.

The University of Illinois Hospital Transplantation Program had first dibs on the kidney for a multi-organ transplant. But those special-priority operations often fall through, which made it likely that allocation would shift to the regular list — topped by Marcus.

Dr. Englesbe told Marcus to hurry to the hospital. He called the Texas procurement organization, LifeGift, and the Illinois hospital to say he wanted the kidney. He offered to pick it up himself.

Soon after the kidney arrived in Illinois, the multi-organ operation was canceled. Under UNOS policy, LifeGift was supposed to offer the kidney to Marcus. It had time: The organ had been outside the donor’s body for just 10 hours. But instead, it gave an open offer to the Illinois hospital.

This was not unusual. Last year, records show, LifeGift skipped patients for 29 percent of kidney transplants.

Dr. Englesbe found out hours later, when surgeons were already transplanting the kidney into a man in his 40s who had been waiting less than six months.

The doctor told Marcus and Dr. Edsall, who began sobbing. They drove home.

Dr. Edsall learned the full story months later from The Times. She was glad the kidney had been used. But she could not help feeling angry.

“What made them decide Marcus wasn’t good enough for that kidney?” she said. “What was the deciding factor so that somebody said, ‘This man deserves it more than he does’?”

In an interview, Kevin Myer, the chief executive of LifeGift, said the organization had acted in good faith to place the kidney. “It’s really tragic that Marcus did not get this kidney because of the system. Not because of our inattention or intention to bypass Marcus or anything like that,” he said. “Do I feel terrible that he didn’t get his opportunity? Yes, frankly.”

The University of Illinois said allocation was LifeGift’s responsibility.

Marcus eventually got a transplant, from a donor who died in Arizona last June. But the kidney was less compatible and in worse condition than the one he had missed out on. He still has to spend two days a week at dialysis, where a machine filters toxins from his blood.

If his kidney functioning does not improve, Marcus may go back on the transplant list. His parents know he cannot survive on dialysis forever.

His doctors are still furious. “We’ve built this system to try to be fair to people, and this just seems so unfair,” Dr. Barrett said, adding: “We followed the rules, and the rules didn’t seem to apply for him.”

The doctors filed a complaint about the incident. They got no response.