The 'Domino Chains' Transforming Kidney Donation

This story was originally published by Reasons to be Cheerful

10 min read

A guy goes into a bar, and leaves with one less kidney. That’s a joke Mark Scotch tells about his life. It’s only a slight exaggeration: A chance encounter in 2020 did lead to him donating a kidney — although not quite in the way he expected.

Scotch, then 64, had gotten talking to Hugh Smith, 56, in a Louisiana bar. At the end of their conversation, Smith mentioned that he spent 10 hours every night on dialysis, something only a kidney transplant would change. “It went from this enjoyable experience of meeting him to thinking, ‘Oh my God, this guy’s life is just horrible.’ … It was just so abrupt,” recalls Scotch. 

Without much thought, Scotch immediately offered one of his own kidneys. His sister-in-law had previously donated a kidney, so he knew that a person could live perfectly well with just one. There was another reason this radical gesture felt right: He and his wife Lynn had lost their first son at 15 months old, and they’d always regretted not donating his organs. Meeting someone in need all these years later was “a realization that maybe we could have a second go at this,” he says.

Scotch was all set to travel from his home in Wisconsin to Louisiana, where Smith lived — a keen cyclist, he planned to do it by bike and raise awareness along the way — when he learned of another option. He could donate to someone else closer to home, as part of a “voucher” scheme that would push Smith to the top of the waitlist in his area. That was appealing for practical reasons: It meant Scotch could be seen for potential post-operation complications in his local hospital, instead of having to return to Louisiana each time. And it meant both he and Smith would be matched with the best possible candidate, meaning optimal outcomes for two patients.

“It just blew my mind,” says Scotch of this opportunity. In late 2020, his kidney went to a stranger — someone he still knows nothing about — and five months later, Smith received his own life-changing transplant from another donor. 

The Scotches are now vocal advocates of living donation: Lynn later donated a kidney herself, and Mark has also donated a portion of his liver. But, until that chance meeting in the bar, they assumed deceased donors filled the gap. “We never knew there was such a need,” Mark says. 

In fact, more than 90,000 people in the U.S. are currently on the waitlist for a transplant, and every day 12 to 17 people die while waiting. Most other countries report similar mismatches of need and supply. Kidney disease is among the 10 leading causes of death worldwide.

Many patients turn to family or friends as living donors. But often these are screened out when doctors identify medical or psychological issues deemed too risky for surgery. Another option is a willing, unrelated donor. This is still very unusual: only around 500 people in the U.S. donate a kidney to a stranger each year. In most countries this is not allowed at all, given the potential harm to a healthy patient for no tangible benefit to them (like any surgery, there are risks of complications or even death). And whether you find a potential donor within your circle of friends, or by chance in a bar — or, as is increasingly the case, via social media — compatibility is not guaranteed. In fact, a third of would-be donors are incompatible with their intended recipients. 

For a long time these people would simply be told, “‘I’m so sorry — there’s the door, you don’t match,” says Dr. Mike Rees, director of renal transplantation and transplant surgeon at the University of Toledo Medical Center. From the early 2000s, he was among those trying to change this. The result was what is now known as paired donation, where algorithms help match incompatible donor-recipient pairs. For example, a woman who is incompatible with her husband could instead donate her kidney to another patient, whose loved one would donate to her husband in exchange. This allows an estimated 20 to 30 percent more transplants. 

In 2006, nondirected donors — those willing to give to a stranger — were brought into the mix, kicking off so-called “domino chains.” But operations were still done on the same day, to avoid the risk of someone pulling out and the chain falling apart. That, in turn, limited the numbers: For a chain involving three transplants, for example, you’d still need six operating teams, available at the same time and within a reasonable distance of each other.

Perhaps surprisingly, it was an economist who drove the next major innovation. Alvin Roth, an expert on market design, had long been discussing kidney exchange as a theoretical market in which no money could change hands (paying for organs is illegal everywhere except Iran). When he discovered that clinicians were already working on this, he got in touch. Together they created the New England Program for Kidney Exchange, a computerized system to match kidney recipients with compatible living donors.

In 2007, Roth, Rees and others expanded on the domino chain by creating the first non-simultaneous, extended altruistic donor chain. In this model, surgeries don’t need to take place simultaneously. Each pair receives a kidney before they donate one, which offers some security: If for some reason the chain breaks, the pair can still donate later because they still have a kidney to give. 

Still, it required some trust — and it could have “gone terribly,” admits Rees, who founded and runs the Alliance for Paired Kidney Donation. What if someone didn’t uphold their end of the bargain? But that first attempt worked: All 10 transplants went ahead, and after three years the chain continued, enabling another 16 transplants. There have been numerous non-simultaneous chains since then. Rees, initially of the view that “everybody was capable of screwing the next person,” now thinks that their success makes sense. After all, people who decide to donate to a loved one are not “everyone”: They’re already more generous than most. Then they witness their loved one being transformed thanks to a new kidney. “To think that that person would now cheat another family out of that — it’s possible, but it’s extremely rare,” Rees says. 

Rees, Roth and others were not the only ones trying to improve the prospects for those on the waitlist, and the various innovations built on one another. The National Kidney Registry — a U.S. organization that uses DNA matching technology to pair donors and recipients — created its standard voucher program in 2014, the scheme that Smith and Scotch discovered in 2020. The non-simultaneous, extended altruistic donor chain helped resolve concerns about donors dropping out, explains Rees; trust in the system helped the voucher idea to become viable. 

This is all good news for kidney patients. Access to a national pool of donors results in better quality matches, which means the transplanted kidney will last longer, and potentially require less immunosuppressive medication, says Samantha Hil, vice president of marketing at the National Kidney Registry, and a transplant recipient herself. And it means the donor can schedule their surgery at a time that suits them, regardless of when the intended recipient is ready — especially helpful for donors who are also the ones caring for the recipient (like a spouse). “This way, the donor can heal before they have to care for the recipient’s recovery,” Hil says. 

Researchers including Roth — who in 2012 won a Nobel Prize in Economics, in part for his work on kidney exchange — are now exploring new ways to expand access to kidney transplants. This includes using deceased donations to kick off chains in the U.S. for the first time, and helping to expand exchanges in Brazil and India, two countries where donation rules are currently very restrictive. 

Jaya Jairam, a kidney recipient and project director at India’s MOHAN Foundation, a nonprofit promoting organ donation, welcomes the expansion of kidney exchange in her country, where “the burden of kidney failure is high and the availability of deceased donor organs remains limited.” But strong ethical safeguards to protect donor welfare will be vital, she says — ideally through independent donor advocates, whose sole responsibility would be to protect donor interests throughout the process. Introducing any successful program into a new country must also consider the cultural context: In India, decisions about donation are often made within families rather than by individuals alone, says Jairam, so women and young people may be susceptible to subtle or overt pressures to donate. 

Donor welfare and autonomy is a core concern of any organ donation program. But some argue it’s possible to be too cautious, which harms those who lose out on transplants. In the U.S., only about two percent of willing donors ultimately donate. “I think we [in the U.S.] are already way too conservative as transplant professionals,” says Rees. “Of course we never want to coerce anybody, we shouldn’t take advantage of anybody, but I think there are a lot of people who don’t know this is an option. 

“I’ve seen so many amazing stories where people did give a stranger their kidney, and so many of those people would say it was one of the best parts of [their] life. I think we should give more people that opportunity, and be careful that we’re not coercing them.” 

Many others agree. Momentum is building in the U.S. behind the proposed End Kidney Deaths Act, which would provide a refundable tax credit of $50,000 to those who donate a kidney to a stranger. Campaigners say this would remove financial barriers to donating, which include loss of income during testing, surgery and recovery — while saving the billions of dollars currently spent on dialysis. 

Another barrier is simply the lack of awareness. “Most people are not aware that they can donate while alive,” says Hil. Mark Scotch is among those trying to change this, through his self-organized Organ Trail, which has seen him cycle more than 12,000 miles and give well over 300 interviews. Now aged 70, he is also proving that healthy donors can be as fit and healthy as anyone else. 

And for people like the Scotches, donating an organ is perhaps the most tangible way to know you are making a difference.

“What else can you do for another person that has such a significant impact on their life, and the lives of their family members, with so little impact on the donor? We haven’t found anything,” says Lynn. 

The post The ‘Domino Chains’ Transforming Kidney Donation appeared first on Reasons to be Cheerful.

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