More than 100,000 people in the United States are on a list for a kidney transplant, often waiting years for the call that will save their lives—a call that doesn’t always come in time.
Now a new study has found that while many of these patients are waiting, getting sicker, and undergoing grueling treatments, transplant centers are repeatedly passing up organs without their knowledge, and those organs are going to people lower down on the list.
“The patient is left in the dark,” Dr. Matthew Cooper, director of Kidney and Pancreas Transplantation at the Medstar Georgetown Transplant Institute and a member of the National Kidney Foundation’s Board of Directors, told The Daily Beast.
“It is shocking when you read it in these plain of terms,” Cooper said of the data in the study, published Friday in the medical journal JAMA Network Open. “You can’t believe that it happens in the United States in the 21st century, but it absolutely does.”
The study used data from 280,041 kidney transplant candidates who received at least one offer for a deceased donor kidney between 2008 and 2015. Nearly 26,000 died while on the waiting list; the study shows those patients received a median of 16 offers that were rejected by the transplant center.
“Every single kidney that was included was used by someone eventually,” the study’s lead author, Dr. Syed Ali Husain, an assistant professor of Nephrology at Columbia University’s Irving Medical Center, told The Daily Beast.
The number of times a kidney is declined doesn’t seem to affect the outcome of the eventual transplant, “calling into question the validity of subjective decisions to refuse offers,” the study authors wrote.
Prashant Praveen, a 36-year-old attorney who lives in New York, has been waiting for a new kidney for four years and has posted his story on Facebook in hopes of finding a match. Today he survives on dialysis sessions that can last up to an hour, four times a day. Praveen knows he is lucky, his job allows him to work from home, a luxury most Americans who need dialysis to live do not have.
Praveen was able to register at both the New York University and the Northwestern University transplant centers; but even though his care has been thorough, the experience has not always been straightforward.
“Honestly I wouldn’t even know if they had registered or not registered any other kidneys for me and then decided to pass on,” Praveen told The Daily Beast. “It’s just sort of the one time when you’re signing up, they say, ‘Here are the conditions that we follow for accepting kidneys,’ and then once you’ve signed off on it that’s it.”
Praveen said he chose Northwestern in part because his family lives nearby, but mostly because of their high success rate. He’s concerned by the idea that he might not be in the loop on whether a kidney is rejected.
“I honestly don’t even remember what their standards for accepting kidneys are… I don’t know if I can access them,” he said. “I looked this morning to see what Northwestern tells me and I couldn’t find it on their website.”
Everyone agrees the U.S. kidney transplant system is complex. It has to be. The wait list of patients who meet the criteria is calculated through an algorithm that takes into account a myriad of genetic factors, the results of tests on both patient and donor, and geography—all under a ticking clock.
Even accounting for all the variables, some experts say the organ refusal rate at transplant centers is still too high.
Jesse Schold, director of Outcomes Research in Kidney Transplantation at the Cleveland Clinic, thinks the U.S.’ stellar reputation for transplants—the national success rate is about 97 percent—is actually part of the problem.
Transplant centers are evaluated by the Centers for Medicare and Medicaid Services, CMS, in conjunction with non-profits contracted through the federal government, like the United Network for Organ Sharing, UNOS. According to Schold, CMS and UNOS primarily view one year post-transplant survival rates as the “gold standard” for evaluating and rating centers.
A couple of decades ago, he said, that made sense because short-term success rates were lower and there were bigger gaps between centers. But now, one-year outcomes are much better.
“And so the variation between centers is very, very modest, yet centers are judged on that metric primarily,” Schold said. “And the problem with that is very small incremental differences between centers are used to adjudicate a good center and a bad center, and those very small differences tend to dissuade centers from accepting risk. And risk aversion can be quite problematic because on average transplantation is efficacious even using high risk organs.”
In short, transplant centers run the risk of downgrading their evaluation if they accept less-than-ideal donor organs, even if those organs could potentially be life-saving.
According to the study, the predominant reason transplant centers gave for refusing an organ was concerns over “organ or donor quality.”
Dr. Sumit Mohan, an associate professor of medicine and epidemiology at the Columbia University Medical Center, and a co-author of the study, told The Daily Beast that that’s “an overly broad category.”
“(It) does not help us understand what the precise reason was that this was not an acceptable kidney, nor does it seem plausible given that all the kidneys in our analysis were subsequently accepted for transplant into another patient lower on the wait list,” he said. “We know that kidneys get discarded more often on the weekend; kidneys are turned down more often on Fridays and Saturdays. Clearly something more than organ quality is driving this.”
Husain said the accreditation process needs to be revamped to give centers an incentive to more aggressive accept offers of kidneys.
“Every patient should know every offer that is given to them… empower patients to say, ‘Hey, this isn’t working for me,’” Husain said. “Right now the centers have no incentive that’s forcing them to inform the patients… A lot of this is due to an unfortunate regulatory environment that’s not best for the patient.”
Darren Stewart, the principal research scientist at UNOS, told The Daily Beast that “there is evidence to suggest” risk aversion is a problem. Stewart said the organization is working to correct these issues through a number of updates to the organ allocation process. And the federal government last year proposed de-emphasizing the one-year metric for evaluating transplant centers, calling for public commentary on the issue.
“The overarching problem in transplants is always supply and demand,” Cooper said. “The question is whether transplant centers are working as hard as they can to get patients these organs that are available to them, and whether we’ve backed ourselves into a corner with regulations.”
That question is all too real for Corinne Ghelber. The 66-year-old mother of three and grandmother of two, watched her mother and sister die while on dialysis awaiting a kidney. Like them, she suffers from polycystic kidney disease and is now on a list, too.
“I have known this day was coming for over 30 years I tried living a very healthy lifestyle but, alas, it is progressing as my mother's and sister's did,” Ghelber told the Daily Beast. “I don’t know what’s going to happen to me.”
Like many people who need a kidney, Ghelber has set up a website in search of a life-saving donor. The wait for an organ that matches her blood type through the national system could take more than five years.
“I spend a lot of my time very uncertain about the process because it’s hard for me to believe that there’s no subjectivity in it,” Ghelber said.
“There’s a lot of weird stuff with this and I think that there is some subjectivity, but if you ever ask anybody they all say it’s time on a list. You cross your fingers, you pray, you just hope you get one.”