This story was originally published by ProPublica. ProPublica is a Pulitzer Prize-winning investigative newsroom. Sign up for The Big Story newsletter to receive stories like this one in your inbox.
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. But he probably should have been.
His mom was reaching out to as many people as she could, asking them to be screened as a potential donation match.
“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. For him, the decision was easy.
“There was no other thought besides trying to help Scott,” Malin later said.
He clicked on a link in the email to begin the screening process.
If he turned out to be a match, Malin knew the surgery could put his health at risk. The recovery would be physically 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.
Living organ donors are never supposed to receive a bill for care related to a transplant surgery. The recipient’s insurance covers all of those costs. This rule is key to a system built on encouraging such a selfless act. And for most uninsured patients in end-stage kidney failure, Medicare would pick up the tab. 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 data from the United Network for Organ Sharing, in the last three years more than 30% of kidney donations came from living donors. Neither UNOS nor other national advocacy organizations track how often billing problems like those encountered by Malin occur. But advocates say they do happen and can deter 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 describe themselves as cousins, but their blood relationship is distant. Their great-grandfathers were brothers, making 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 of 2020 he had just moved to Fort Worth, Texas, for work. He went in for routine blood work to monitor a medication he was taking. When the results came in, the doctor called to ask if he was on dialysis.
“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 just 17% kidney function. Thus began his search for a new 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. In February 2021, Kline and his family began reaching out to everyone they knew. Volunteers signed up for medical screening, but insurance would only pay to test one at a time. Waiting for one potential donor to be ruled out before testing another drew out an already lengthy process.
Four months after Malin signed up to be screened, he got final confirmation he was a match.
By June, the two cousins were deep in the byzantine organ transplant bureaucracy: screeners, financial counselors, doctors, specialists, laboratories and, the most difficult, insurance companies.
“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 of professionals assembled to assist the two patients through the process.
“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.
That assurance, however well-intentioned, fell flat.
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 really nice to have that. Usually you’re there alone, especially during COVID.”
By early August, Malin was back in Reno to finish recuperating. The next week, he started law school. Life was getting back to normal.
When the first bill arrived, it was more annoying than stressful. It totalled just $19.15 for blood work done before the surgery. The hospital said it would take care of it, Malin said. Then he got a notice that an old insurance plan he was no longer a member of had been billed $934 for lab work. Again, he notified the hospital.
In late September, Malin got a bill for a stomach-dropping amount: $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 and forgot about it.
A month later, a second notice arrived. Then, on Dec. 6, Malin received a document that scared him.
“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 he called the billing company and the hospital, 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 did his best to leave Kline out of it entirely.
“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.”
Still, it troubled Kline that Malin was facing such problems.
“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 heard nothing until Jan. 19, one day after ProPublica reached out to NorthStar for 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. The letter explained that NorthStar had received incorrect insurance information at the time of the surgery. (A spokesperson later said NorthStar received no insurance information at the time of the surgery.) In such cases, bills are automatically sent to the patient.
The company has since adjusted its policy to prevent that from happening in future transplant cases, Stets wrote.
“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. The hospital, however, declined to grant an interview to ProPublica about what went wrong with the billing.
A spokesperson provided a short statement: “We are pleased this has been resolved for our patient by NorthStar. Although billing can be complicated, these occurrences are rare. We have also been in touch with the patient and we don’t have anything further to report.”
Financing such surgeries is so complex that transplant centers employ coordinators to help both patients with the process.
“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 he feels fortunate to be equipped to fight the billing issues. He worries about others with fewer means facing a similar situation, recognizing it could be a barrier to those selfless enough to donate an organ.
“It sucks but I wouldn’t have changed any of it,” he said. “I like my cousin. I want him to be healthy.”
