The email arrived in Elliot Malin’s inbox from his cousin’s mom.
“Scott needs a kidney,” the subject line read.
The message matter-of-factly described Scott’s situation: At 28 years old, Scott Kline was in end-stage renal failure. He wasn’t on dialysis yet. He probably should have.
His mom reached out to as many people she could to ask them to screen for potential donors.
“Thank you for considering it, but please don’t feel any pressure to do it,” she wrote. “Sorry I have to share this burden, but the best potential match is family.”
Malin didn’t need to be pressured. He made the right decision.
“There was no other thought besides trying to help Scott,” Malin later said.
To begin the screening process, he clicked on the link in the email.
Malin knew that surgery could cause him to lose his health if he became a match. The recovery would be painful. What he didn’t anticipate was that it would put his finances in jeopardy. That just as he would have to trust the skilled hands of the surgeon to make sure the operation went well, he’d have to trust in the expertise of billing coders and financial coordinators to navigate the increasingly complex system that covers the costs of transplant surgeries.
A bill for transplant surgery costs is not something that living organ donors should receive. The recipient’s insurance covers all of those costs. This rule is essential to a system that encourages selflessness. Medicare would cover the cost for most patients suffering from end-stage renal failure who are not covered by insurance. But in Malin’s case, he would end up facing a $13,000 billing mistake and the threat of having his bill sent to collections.
Donors like Malin play a critical role in the nation’s transplant system. According to the United Network for Organ Sharing, more than 30% kidney donations have come from living donors over the past three years. UNOS and other national advocacy groups do not keep track of billing problems such as those experienced by Malin. Advocates say they do occur and can discourage donors from coming forward.
“Living donors should not be receiving any bills at all whatsoever regarding any part of the living donation process,” said Morgan Reid, director of transplant policy and strategy for the National Kidney Foundation.
Malin and Kline refer to themselves as being cousins, although their blood relationship is distant. Their great-grandfathers, who were brothers, made them third cousins. Still, they’re the same age and grew up as friends, sometimes traveling and spending holidays together. Kline attended Malin’s wedding in 2019.
Exactly what went wrong with Kline’s kidneys is a mystery. In the summer 2020, he had just moved from Texas to Fort Worth, Texas for work. He was there for routine blood work to check the effects of a medication he was on. The doctor called him to inquire if he was on dialysis after the results were returned.
“You’re in end-stage renal failure,” the doctor told him.
“Oh, no I’m not,” Kline responded.
The bloodwork wasn’t wrong. He had 17% kidney function. So began his search for a replacement organ. Kline was told his wait for a kidney could be three to five years if a friend or family member didn’t step forward. Kline and his family began to reach out to everyone they knew in February 2021. While volunteers signed up to medical screening, insurance wouldn’t pay to test more than one person at a time. Waiting for one potential donor before testing another made the process even more tedious.
Malin signed up for screening four months ago. He received final confirmation that he was a match.
The two cousins were already involved in the complex organ transplant bureaucracy. Screeners, financial counselors and doctors, specialists, labs and, most importantly, insurance companies, by June.
“The amount of hoops you have to jump through to do this is pretty extraordinary,” Malin said, describing rounds of medical tests, mountains of paperwork and preauthorizations for procedures. A multidisciplinary team was assembled to support the patients.
“The hospital was amazing on trying to make everything as easy as possible,” he said of the team.
Malin said they gave him one assurance: He wouldn’t have to contend with any bills or be responsible for a dime of the surgery’s estimated $160,000 cost. The team had received preauthorization from Kline’s insurance plan, which would pick up all of Malin’s medical costs.
Despite being well-intentioned and a great promise, it fell apart.
In July, Malin traveled from his home in Reno, Nevada, to Fort Worth, where the cousins underwent the transplant surgery at Baylor Scott & White All Saints Medical Center. The surgery was successful.
Malin spent three days in the hospital recovering, Kline a day or two longer — a painful experience made bearable by their companionship.
“We would do our little walks around the hospital floor,” Kline said. “We would be suffering together. It was so nice to have that. Usually you’re there alone, especially during COVID.”
Malin was back in Reno by early August to complete his recovery. He began law school the following week. The rest of his life was returning to normal.
It was more frustrating than it was stressful to receive the first bill. It was $19.15 for bloodwork done prior to the surgery. Malin stated that Malin was assured by the hospital that they would take care. Malin received a notice from the hospital that a former insurance plan he no longer had was being billed $934 for laboratory work. He notified the hospital.
Malin was sent a bill in September for a jaw-dropping $13,064. While he was startled by the cost, it didn’t worry him too much. He knew Kline’s insurance was responsible for paying it. He notified the hospital but forgot about it.
A second notice was sent a month later. Malin was then frightened by a document that arrived Dec. 6.
“Final Notice! Your account is now considered delinquent,” the notice read. If he didn’t take action, the billing company warned, it would attempt “further collection activity.”
The bill was from NorthStar Anesthesia, a firm that provides anesthesia services to hospitals across the country, including Baylor Scott & White All Saints.
Now, Malin wasn’t only irritated that the bills just kept coming, he was worried about his credit.
“I did call them and kind of chewed them out a little bit,” Malin said. “I walked through what this was for, that it was a kidney donation and I’m not the responsible party.”
Malin complained on Twitter about the aggressive billing practice, eliciting an array of responses, from jokes about asking for his kidney back to outrage that he’d be in this position after such a gift.
After calling the hospital and the billing company, he realized that there was nothing else he could do.
“I’m just waiting to see if I go to collections or not,” Malin told ProPublica two weeks later.
He tried his best to keep Kline out of the fray.
“He’s had a lot on his plate,” Malin said of his cousin. “His recovery has been harder than mine. He’s the one accepting the organ, so he’ll be on immunosuppressants the rest of his life. Because of COVID, he’s largely stuck indoors. I don’t tell him a lot of it. I don’t want to stress him out.”
Kline was still concerned that Malin was having such trouble.
“At the end of the day, I want everything to go as smoothly as possible for Elliot,” Kline said. “He was doing me an unbelievable kindness. I owe my life to him.”
Malin did not hear anything until Jan. 19, one-day later ProPublicaNorthStar was contacted to provide comment.
“The CFO of NorthStar just called me and told me she’s taken care of the bill,” Malin texted a reporter.
The next day, the company emailed Malin, confirming he would not be responsible for the bill, that he was never sent to collections and that his credit wouldn’t be affected.
“On behalf of NorthStar, I apologize for causing any confusion or concern for you regarding this matter and assure you that it has been resolved,” wrote Kate Stets, the company’s chief financial officer.
She said that after his call on Dec. 7, the bill had been rerouted to “the correct parties,” but that the company had failed to communicate that to him. In the letter, she explained that NorthStar received incorrect insurance information at time of surgery. (A spokesperson later stated that NorthStar did not have any insurance information at the time of surgery. In such cases, bills will be automatically sent to the patient.
Stets stated that the company has since modified its policy to prevent such an outcome in future transplant cases.
“To be clear, it is not NorthStar’s policy to bill transplant donors for bills related to their donation surgeries,” Stets wrote. “We recognize the well-established public policy standard and practice that transplant donors should not be billed for such services — that we and the nation’s health care system have a responsibility to foster and encourage such acts of selflessness and generosity.”
In a statement, a NorthStar spokesperson said no other organ donors owe “out of pocket payments.”
“NorthStar did not hear from Baylor on this matter previously and was first notified of the billing error on December 7, 2021 after insurance information was not provided to NorthStar by the transplant center at the point of care,” a spokesperson said. “NorthStar resolved the error immediately and closed the account that same day, prior to any inquiry from ProPublica.”
Both Malin and Kline commended the team at Baylor Scott & White All Saints that guided them through the process. However, the hospital declined to give interviews to Malin and Kline. ProPublicaLearn more about the billing errors.
A spokesperson provided a short statement: “We are pleased this has been resolved for our patient by NorthStar. These occurrences, while not uncommon, can be complicated billing. We have also been in touch with the patient and we don’t have anything further to report.”
The financing of such surgeries is so complicated that transplant centers employ coordinators to assist both patients and the staff.
“I tell donors, I can’t guarantee you won’t get a bill, but if you do, call me,” said Deidra Simano, president of the Transplant Financial Coordinators Association.
In one case, after trying everything to get a provider to bill the proper insurance, Simano resorted to paying a patient’s $200 bill with the transplant center’s credit card.
“That’s what we had to do to make it go away,” she said.
Malin said that he is grateful to have the ability to resolve billing issues. Malin worries about those with less means, and recognizes that it could be a barrier for those who are selfless enough to donate organs.
“It sucks but I wouldn’t have changed any of it,” he said. “I like my cousin. I want him to be healthy.”
