The worst moment of Garet Hil’s life, he once said, came when he discovered he couldn’t donate a kidney to his sick 10-year-old daughter. By the time the girl found a match a couple of months later, Mr. Hil, an entrepreneur, had drawn up plans to transform the world of living organ donation.
His organization, the National Kidney Registry, started in 2007 with a simple idea: Donors who are incompatible with sick loved ones give their kidneys to a nationwide pool. The sick patients tap into that pool of strangers to find matches more quickly.
Since its founding, N.K.R. has enabled nearly 12,000 such swaps, called paired donations, far more than any other public or private program. The organization’s focus on technology and efficiency has jolted a sluggish system, many health experts said.
But at the same time, N.K.R. has created a multimillion-dollar business with considerable power over the flow of thousands of organs, according to interviews with more than 100 people in transplant medicine and a review of business records. Many doctors told The Times the stakes of these lifesaving exchanges were too high to be managed by a private company with little government oversight.
As N.K.R. has grown, it has charged hospitals steep fees for access to its registry of donors. Some of that cost is passed on to taxpayers through Medicare.
The organization was a nonprofit for more than a decade, but during that period paid at least $39 million for technology and other services to a company owned by Mr. Hil, charity filings show. In 2023, N.K.R.’s commercial operations were sold to a new for-profit company owned by Mr. Hil, making its finances much more opaque.
About 40 percent of U.S. transplant centers work with the organization, and many have been pleased with improvements in the speed and quality of kidney matches. The median wait time for N.K.R. patients is about two months, compared with several years on the national waiting list for kidneys from deceased donors.
Nationwide, however, living kidney donations have stayed roughly flat since the organization’s founding, according to a New York Times analysis of government transplant data. Mr. Hil said that the number would have fallen if not for N.K.R. But many doctors said that the organization has simply found a way to profit off some transplants that likely would have happened anyway.
“It’s basically a money transfer,” said Dr. Lloyd Ratner, a surgeon at Columbia University who performed the second-ever paired transplant in the country. He said the hospital had parted ways with N.K.R.
Mr. Hil said his technology company had been compensated fairly for services it provided to the charity. And N.K.R.’s success, he said, might not have been possible “without the extraordinary investment we have made or the incentives of a for-profit business.”
Many patients told The Times that they had a good experience with N.K.R. and were matched quickly. A small number of hard-to-match patients, however, have waited months or years after their loved ones donated to a stranger. Some became too sick or died before they could get a kidney in return, doctors said.
This year, The Times has reported on a range of problems in the organ transplant system, which largely relies on deceased donors. Decades ago, the United States made it illegal to sell organs and set up a national waiting list to try to ensure fairness. Today, about 90,000 people are waiting for deceased-donor kidneys. A publicly available algorithm prioritizes them based on several factors, such as their age and how long they have been waiting.
Kidneys from living donors are rarer and tend to last longer. But unlike deceased organ donation, living donation is generally arranged privately, with few federal rules about how to choose patients.
For most of its matches, N.K.R. relies on a computer program developed by Mr. Hil’s company, which weighs patient compatibility and many other factors. But when donors don’t match any recipients in the registry, the organization has broad discretion over which hospitals get those bonus kidneys.
N.K.R. gives the kidneys to hospitals that contribute the most to its network, an arrangement that some doctors said was unfair to patients outside of N.K.R. hospitals. Mr. Hil said the policy, which was overseen by its medical board, “is set up so that it drives behavior and incentivizes the transplant centers, which is for the greater good.”
More on Organ Transplants
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Skipped Over in Line: The sickest patients are supposed to get priority for lifesaving transplants. But more and more, they are being skipped.
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Bungled Organ Retrievals: Potential donors endured rushed or premature attempts to remove their organs. Some were gasping, crying or showing other signs of life.
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Courting Overseas Patients: Despite an organ shortage, some U.S. hospitals seek out international patients, who pay as much as $2 million for a transplant. In recent years, patients from abroad have typically received organs faster than U.S. patients.
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Pig Organ Transplants: The U.S. Food and Drug Administration has given the green light to two biotechnology companies for clinical trials that will transplant organs from genetically modified pigs into people with kidney failure.
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Organ in a Box: Perfusion keeps a donated organ alive outside the body, giving surgeons extra time and increasing the number of transplants possible.
Dozens of doctors and bioethicists told The Times that while N.K.R.’s goal of a nationwide system for living donation was laudable, they worried about a private company managing it.
When someone is willing to donate a kidney to a stranger, “that gift should be a national resource,” said Dr. Adam Bingaman, who helped build a large hospital program for paired donations and now works at Emory University School of Medicine, an N.K.R. subscriber.
“It should not belong to a transplant center,” he added. “It should not belong to a private organization.”
Rising Fees
American surgeons began doing paired kidney donations in 2000. Early on, this meant a direct swap between two pairs of donors and recipients, but it swiftly progressed to longer chains.
Initially, surgeries took place simultaneously to avoid scenarios in which one pair donated a kidney without promptly getting one back. Later, doctors realized that altruistic donors — who give a kidney to a stranger for nothing in return — could kick off a series of nonsimultaneous donations.
Mr. Hil aimed to make long chains connecting people across the country. Because his fledgling charity didn’t have the resources to develop matching software, Mr. Hil said, he turned to his technology business, Hil & Co.
Initially, N.K.R. ran on charitable contributions, including some from the Hil family. In those years, Mr. Hil’s technology company did work for the nonprofit at no charge. Without that help, he said, “N.K.R. would have failed.”
By 2012, the charity had found its footing, pulling in nearly $1.5 million in revenue from hospitals. That year, N.K.R. paid Hil & Co. about $900,000 for “database management and technology” as well as rent for shared office space in Babylon, N.Y.
As it grew, N.K.R. charged hospitals more.
Annual N.K.R. subscription fees for some hospitals have risen from roughly $2,500 in 2011 to about $30,000 today, according to contracts and bids reviewed by The Times. The contracts also outline other possible fees — including for testing, travel and logistics — that can exceed $60,000 per transplant.
“Just having patients in N.K.R. is expensive,” said Dr. Edward Hollinger, a transplant surgeon at Rush University in Chicago, which has worked with N.K.R. “That’s probably the biggest reason why programs don’t do it.”
Mr. Hil said that N.K.R.’s fees “have evolved consistent with the more sophisticated nature of our technology today.” More than 100 hospitals work with N.K.R., he said, because they value these services. The organization also reimburses some donor costs, he added, including $6 million this year for lost wages.
Hospital employees and consultants said transplant centers often request reimbursement for N.K.R. fees from Medicare, the federal insurance program. Mr. Hil said the many transplants enabled by N.K.R. have saved the government money because those patients no longer need kidney dialysis.
In an interview at the company’s headquarters in Greenwich, Conn., Mr. Hil outlined the value of N.K.R.’s proprietary technology, which matches donors with recipients and manages complex travel logistics to quickly move organs around the country. The matching program is overseen by a medical board that includes donors, recipients and transplant experts, many of whom work at subscribing hospitals.
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Mr. Hil said that N.K.R. had enabled far more transplants than its competitors. They include a tiny government program that doctors said had been held back by red tape. N.K.R. also makes better matches, Mr. Hil said, which helps transplanted organs last longer.
Since N.K.R.’s first transplant in 2008, Mr. Hil said, living donation has grown at subscribing hospitals while falling at others. He said that was because his organization offered services — such as personalized websites — that attracted people who otherwise would never have donated.
Some doctors were skeptical of N.K.R. taking credit for those increases, given that the organization works with some programs that were already thriving or that had hired surgeons known for doing living donations.
In any case, N.K.R. has managed to create a large exchange used by people around the country — a feat that no public or private group had done before.
“I really have been just amazed and so impressed with what N.K.R. was able to do,” said Sommer Gentry, a mathematician at New York University’s medical school who has done research with N.K.R. “They beat everybody.”
But along with that success, some experts said, came unchecked influence over a precious resource.
“It needs guardrails,” said Keren Ladin, a health policy expert at Tufts University who has led the ethics committee of the Organ Procurement and Transplantation Network, which oversees the national transplant system.
Strings Attached
N.K.R. has grown with both carrots and sticks: financially incentivizing hospitals to add more donors and penalizing them if they tried to back out of agreements.
One of those incentives: waiving subscription fees for some hospitals that sign “all in” contracts. In exchange, hospitals must add all of their incompatible pairs and altruistic donors to the registry.
N.K.R. also gives certain hospitals “end-chain kidneys,” the extra organs that result when a donor does not match anyone in the registry. Each year, according to N.K.R., it distributes about 500 such kidneys, leaving the hospitals to determine their recipients.
That perk comes with strings attached, according to lawsuits filed by the University of Colorado Hospital Authority and Mount Sinai Hospital in New York.
The hospitals tried to change their all-in agreements. But the contracts stipulated that because the hospitals had accepted more kidneys from N.K.R. than they contributed, they owed $1,000 a month for each outstanding kidney, in perpetuity.
The hospitals challenged these provisions in court, arguing that they violated the law against profiting off organs. But Mr. Hil told The Times these measures were not meant to generate revenue. “They are designed to protect patient access to transplants and the integrity of the N.K.R. network,” he said.
Both lawsuits were settled with undisclosed terms, and the hospitals did not comment on them. They both still work with N.K.R.
One of N.K.R.’s most innovative policies, many doctors said, is known as voucher donation: Donors can choose to give their kidneys immediately, in exchange for organ vouchers their loved ones redeem later.
This arrangement has helped N.K.R. expand its pool. But vouchers add risk for donors giving on behalf of hard-to-match patients. They might go through surgery months or even years before their loved ones get a match. Matches are especially unlikely, doctors said, for “very highly sensitized” patients who carry antibodies likely to reject a transplant.
Mr. Hil said N.K.R.’s software is better at finding matches for these rare patients than the algorithm governing the deceased-donor list. This year, he said, N.K.R. matched 35 such patients. And voucher donation, he said, removes the risk of a donor backing out after a match was discovered.
But many doctors said that given N.K.R.’s relatively small size, these rare patients would be better served waiting for a match before their loved ones donate.
“We definitely recommend that they not go with a voucher,” said Dr. Miklos Molnar, the medical director of the kidney transplantation program at the University of Utah, which works with N.K.R.
Dozens of highly sensitized patients who are also on kidney dialysis have waited a year or more after their loved ones donated, according to N.K.R. quarterly reports since 2022. At least three waited more than four years, and one for seven years.
Doctors told The Times that they knew of some patients who became too sick or died before they redeemed their vouchers. In these situations, Mr. Hil said, donors can name other loved ones to receive “backup” vouchers.
Jasmine Rickey learned in 2019 that her kidneys were failing. After one transplant that didn’t last, she is now highly sensitized.
Her mother, Harmony Jolly, said doctors at the University of Colorado told her that donating her kidney might increase her daughter’s odds of getting one. It could take “five minutes or five years,” Ms. Jolly recalled them saying.
She donated to the N.K.R. pool about two years ago. Her daughter is still waiting.
Ms. Jolly said she would have done anything to increase her daughter’s odds. But Ms. Rickey has had second thoughts.
“I wish I had insisted that we wait for a match first — before my mom donated,” she said. “I feel like they’ve sort of forgotten about me.”
A spokesman from the University of Colorado said, “We counsel our patients that there is never a guarantee of how long someone might wait for an organ.”
Mr. Hil said that while he couldn’t comment on specific patients, “we make extraordinary efforts to support highly sensitized patients in not only achieving a match, but achieving one that will have a good outcome.”
A For-Profit Spinoff
As N.K.R. grew, so did its payments to Mr. Hil’s technology company. From 2012 through 2023, the last year for which N.K.R. filed charity paperwork, it paid Hil & Co. at least $39 million.
In 2023, N.K.R. announced that because of revenue growth from billing services that were not related to its charitable mission, it would transfer its commercial operations to a for-profit company. “We have always been, and will continue to be, driven not by profit but by our mission: to help save or improve the lives of patients,” it said.
Brian Galle, a professor of tax and nonprofit law at Berkeley, said that the organization could have continued as a nonprofit, but if it had, its growing revenue would have triggered additional restrictions on its dealings with conflicted entities like Hil & Co.
Mr. Galle speculated that the move was designed to benefit Hil & Co. “What the press release is actually saying is that we are giving up nonprofit status so that we can keep paying Hil millions of dollars,” he said.
Mr. Hil said that the move was driven by the changes in the business and that N.K.R. should not be tax exempt.
He added that, while N.K.R. had paid Hil & Co. over the years, he had made a “significant” personal investment in the nonprofit and had never taken a salary there. “Everything was fully disclosed,” he said.
In 2023, N.K.R. brought in $69 million, filings show, and spent $68 million, including $8.2 million to Hil & Co. In June of that year, its commercial operations sold for $2.6 million to Best Match Corporation, which had a single owner and employee: Garet Hil.
Mr. Hil said N.K.R.’s valuation had been determined by two independent firms and approved by its board. He declined to share their assessments with The Times, citing confidentiality agreements.
Around that time, an N.K.R. kidney donor complained to New York’s attorney general, accusing Mr. Hil of funneling millions of dollars from the charity into his business. By then, the organization had moved to Connecticut, and New York referred the complaint there.
Connecticut’s attorney general’s office told The Times that it had declined to investigate. Mr. Hil told The Times he was not aware of the complaint.
Brian M. Rosenthal, Julie Tate, Susan C. Beachy and Mark Hansen contributed reporting.
Danielle Ivory is a Times investigative reporter. She has reported on a variety of topics, including gun deaths, the Covid pandemic and the war in Ukraine.
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