More than 70 kidney transplants were performed every day in the United States last year. Rachel Watson wanted to be one of the donors, but was told she didn’t qualify — at first.
Watson, a 27-year-old digital marketer living in Warrenville, had been moved by a news story about a local politician in need of a kidney. In 2022, she reached out to a Chicagoland hospital about donating one of her kidneys to a stranger. During a phone screening, Watson was told that she weighed too much to be considered as a donor.
In January, Watson tried again at Loyola University Medical Center in Maywood. She passed an initial donor screening, but her BMI was still too high.
That’s when she learned about Project Donor, which helps interested kidney and liver donor candidates who are turned away because of their weight or smoking history.
Project Donor, a program run out of the University of Chicago’s Center for RISC, which develops creative solutions for social problems, estimates that 90% of individuals interested in kidney donation don’t make it through the process. The goal is to bring that number down by reaching potential donors who miss donation BMI cutoffs by five to 30 pounds, or because they actively smoke cigarettes, according to University of Chicago professor Steve Levitt, who founded Project Donor and authored the book “Freakonomics.”
Most donation centers require donors to have a BMI lower than 35. They also must not have smoked for at least 90 days before surgery. More permanent factors such as diabetes, cancer, high blood pressure or serious mental health conditions also make potential donors ineligible.
“The system isn’t set up to help them solve those problems,” Levitt said. “We were amazed that there was nobody there trying to take these heroes, these people who are giving up their kidneys for somebody else.
About 90% of Project Donor’s patients are working on weight loss, with the rest trying to quit smoking.
When patients start working with Project Donor, they have a 10-minute consultation with case managers over the phone, then check-ins every two or three weeks. The project provides either free smoking cessation products or free access to Noom, Weight Watchers, Future Fitness or On Point Nutrition. Patients can get a free electric scale, as well as free access to online therapy provider Better Help, upon request.
The project also provides financial assistance, funding donors’ transportation and covering their lost wages during recovery.
Project Donor is working with 170 prospective patients, about 20 of whom live in the Chicago area. Another 250 people have been through the program, RISC analyst Noah Duncan said, and 25 participants have met their donation goals so far. Eight, including Watson, have donated a kidney. Eight more are still navigating the pre-surgery process.
Kidneys are the organs most likely to come from a live donor, and Levitt’s team estimates that 20,000 potential donors don’t qualify every year.
About 106,000 people are currently on the waitlist for a new organ, according to the American Kidney Fund. More than 92,000, or 87%, need a kidney.
Some will wait three to five years, according to the National Kidney Foundation. Meanwhile, 12 die waiting every day.
“We’ve been working — honestly without much success — for a long time on organ donation,” Levitt said of the medical community’s efforts. The project launched in May 2022 and now has eight employees.
Organ donations are facilitated by 56 organizations across the United States. Project Donor has worked with more than 30, and Levitt hopes to connect with every single one.
“We’ll work with anyone who will work with us,” Levitt said.
An individual’s BMI is based on a combination of weight and height. A 5-foot-tall person weighing 180 pounds couldn’t donate a kidney, while a 6-foot-tall donor could weigh up to 258 pounds.
Some medical professionals and patients don’t like to talk about health in terms of BMI. The American Medical Association released a report in June clarifying that BMI predicts health in populations better than individuals, and harms communities of color by drawing on limited data.
But for kidney donation, it still sets a standard.
Most participants are looking to lose five to 30 pounds over six months. For Watson, donating meant losing 17 pounds.
“I feel like the way people talk about weight is like it’s some taboo secret,” Watson said. “Even if they don’t mean for it to be something to be ashamed of, their tone just comes across as it should be.”
Watson chose to use Noom. She liked that the app’s language focused on education and building healthy habits when talking about weight loss, she said.
Most case managers double as masters of social work students at the University of Chicago. And Watson said she didn’t feel any shame in discussing her weight loss efforts with them.
“It was so focused on, ‘We just want to help you meet your goal, and what tools can we give you to do that?’” Watson said.
In the end, it took Watson three months to lose the weight. Her official donor acceptance letter, sent from Loyola in May, still hangs on her fridge. A Get Well Soon card from Project Donor sits nearby on her credenza.
“My house still very much has the artifacts of support they have given me throughout the past year,” Watson said. “It’s a little dorky, but the National Kidney Registry, after I donated, sent me a certificate that I have framed on my living room wall.”
Watson donated her kidney in June and was back at work four weeks later. She still doesn’t know exactly who got her kidney. She received vouchers that could be used to give a friend or relative of her choice priority to receive a kidney of their own.
Watson gave her vouchers to a friend of a friend based in DuPage County, whose husband needed a kidney. She said meeting her voucher recipient provided some of the catharsis she started to want after surgery.
“It totally makes up for any doubt or questioning that I have in my mind,” Watson said. “After seeing people who so desperately want to give their loved ones a kidney but are discouraged from that, if I can fill that gap, it’s like a no-brainer.”
Loyola is one of 10 active kidney transplant centers in Illinois. Five are based in Chicago, including University of Chicago Medical Center, Lurie Children’s Hospital, Rush Medical Center, University of Illinois Medical Center and Northwestern Memorial Hospital.
Project Donor staff check in on their participants for a year after their procedure. Donors are free to reach out years down the line if they decide they want help with relapsed habits, she said.
Watson’s Noom subscription will last a year, and she said some of the habits from her weight-loss journey have stuck. She built gym visits into her daily routine and thinks about food differently.
As notable as the weight-loss help, though, was the removal of financial barriers. Watson said the project improved her faith in the medical system somewhat, though she’s become wary of debts associated with donating an organ, which she hadn’t considered at first.
“I’m very grateful for how it turned out for me, and wary for other people who do have the medical bills,” Watson said.
On average, Project Donor spends $400 per participant, and RISC analyst Ruby Rorty said the group estimates a new kidney is worth between $1.1 million and $1.5 million, in future earning potential and quality of life.
“As economists, we’re very happy with that return,” Rorty said.
iarougheti@chicagotribune.com
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