By Emily Alpert Reyes
As her kidneys faltered, one woman was turned away from a transplant center in Maryland, which told her she was not a good candidate for a coveted organ.
Months later, she was recovering from surgery in New York City, where another transplant center had accepted her after she sought out a different doctor and raised money for the trip.
In New York, a single mother said she was initially told she was “such a good candidate,” only to eventually hear that she needed a reliable vehicle to get to the many appointments required to clear her for a kidney transplant — something she could not afford.
And in Los Angeles County, a 73-year-old man lamented that he spent more than a year and a half waiting for Keck Medical Center of USC — just to hear whether he could get on the waiting list. Frustrated, he turned elsewhere, only to be thwarted by his insurance carrier as the transplant center was nearing a decision. He has been stuck going three days a week to dialysis, the tedious process of pumping out his blood, filtering it and piping it back into his body. It has felt, Roland Coleman said, like being “a trapped animal.”
To even have a chance at a kidney from a deceased donor — a lifesaving resource in limited supply — an ailing patient needs to get onto the waiting list.
But a shrinking share of Americans who undergo dialysis have been getting that chance, national data show. Their odds have been disturbingly shaped by race and income, researchers have found.
Unlike many other steps in the transplant process, which are closely tracked and publicly reported, there is little information readily available about what is happening at each transplant center before a kidney patient is wait-listed — a vacuum that leaves patients and the public in the dark about those crucial decisions.
“It’s a huge problem,” said Dr. Sumit Mohan, a professor of medicine and epidemiology at Columbia University. “We have no idea, nationally, what proportion of patients are actually being referred to transplant centers. We have no idea what proportion actually make it into the transplant center.”
Transplant centers do not have uniform criteria for deciding whom to place on the waitlist, Mohan said, “and there is no transparency in terms of how selective a transplant center is — what proportion of people referred to them do they evaluate, and what proportion do they actually accept? That’s an impossible task for patients to find out.”
Less than 13% of kidney patients undergoing dialysis were on the waiting list in 2020, compared with more than 17% a decade earlier, according to the United States Renal Data System, which tracks information about kidney disease. Even among patients who appear to be prime candidates for transplant, more than half did not get onto a list before or within three years of starting dialysis, one analysis found.
Studies have repeatedly found that Black patients, including those in wealthy neighborhoods, have been less likely to be wait-listed than white ones, even after adjusting for medical and social factors. Researchers have also found that poorer patients and those using public insurance are less likely to get onto waitlists.
Without clearer information about who is getting onto the waitlist and who is not, it is impossible to address disparities in who receives donated organs, experts have argued.
Much of the national debate has revolved around how organs are allocated to wait-listed patients, but far less attention has been devoted to the barriers to getting wait-listed at all, said Keren Ladin, a Tufts University associate professor who heads the ethics committee of the Organ Procurement and Transplantation Network.
Ladin likened the situation to deciding who got onto the few lifeboats on the Titanic.
“If all of the rich white people are in the lifeboats,” she said, “that’s pretty problematic.”
Despite concerns about inequities, the complex decisions about whom to wait-list cannot be boiled down to a standard and inflexible checklist, experts say. Across the country, more than 200 medical centers perform kidney transplants. Some may have the technical capabilities to take on the riskiest patients.
Those center-by-center decisions put patients onto a national waitlist, but they can also register with more than one center, a move that can improve their chance of getting a transplant if the centers are far enough apart to have different kidneys available.
Demand exceeds supply
With demand for donated organs far exceeding the supply, getting onto the waitlist is no guarantee of getting a kidney. Thousands of people who are on the waitlist die annually.
Nationally, less than a third of patients who were wait-listed in 2018 got a kidney from a deceased donor within three years, according to the Scientific Registry of Transplant Recipients.
If a 70-year-old does not have a living donor to help them, “there’s really not much point in putting them on the transplant list, because he’s going to have to wait ... and the truth is they may not live that long,” said Dr. Gabriel Danovitch, medical director for the Southern California organ procurement agency OneLegacy and for the UCLA kidney and pancreas transplant program. Danovitch urged more attention to the need for living donors.
Others argue that if the U.S. had a clearer picture of the number of viable candidates who never make it onto a waitlist, that could pressure key players in the donation system to seek solutions, such as reducing the number of donated organs that go unused.
“Is it acceptable that 25% of kidneys are being discarded? Is that OK with you?” Sen. Ron Wyden (D-Ore.) asked Brian Shepard — then chief executive of the United Network for Organ Sharing, the nonprofit that manages the U.S. transplantation system — during a Senate committee hearing in August.
“No, senator, absolutely not,” Shepard replied.
If the kidney waiting list suddenly doubled, the number of discarded organs would probably drop, says Jesse Schold, a professor in the departments of surgery and epidemiology at the University of Colorado Anschutz Medical Campus. “The urgency would be that much higher.”
Federal officials recently announced that they would overhaul the transplant system and seek out more than one group to manage it, ending the monopoly UNOS has held over the network for decades. A Health Resources and Services Administration spokesperson said one of the goals is to collect data about patients before they reach the waitlist.
Varying referral rates
Some kidney patients are never even referred to transplant centers by doctors or dialysis centers, despite being possible candidates.
In one study of dialysis centers in the Southeast, referral rates were wildly different from one facility to another — ranging from 0% to 100% of patients being referred within a year.
“I’m still seeing patients that have been on dialysis for seven, 10, even 15 years, who say, ‘Oh, yeah, I just had a conversation about transplant,’ ” said Dr. Dinee C. Simpson, a surgeon who runs the African American Transplant Access Program at Northwestern Medicine in Chicago.
Federal regulators have started tying some funding for dialysis centersto the percentage of patients who get onto the kidney transplant waiting list, nudging the centers to refer more. But whether patients make it onto the list can hinge on which transplant center is scrutinizing them.
Dee Griffin, 53, was told five years ago by a Maryland center that she was not a transplant candidate because she had a “pattern of noncompliance,” among other issues, medical records show.
Griffin found that absurd, pointing out that, at the time, she was undergoing home dialysis, a process that requires patients to diligently adhere to the treatment. She believes the decision had more to do with the doctor in charge; she had asked to replace him during an earlier hospital visit because he disregarded her input.
After being turned down as a candidate by the Maryland center, Griffinsought out another doctor who had treated her in the past. Three months and five days after being turned down as a candidate in Maryland, she got a kidney transplant from a New York center.
“Imagine if I just accepted what this man said,” Griffin said, “and went home to die.”
Rachel E. Patzer, director of the Transplant Health Services and Outcomes Research Program at Emory University, has worked to gather information about wait-listing from dozens of transplant centers. Thanks to that legwork, she and other researchers discovered that some transplant centers have been twice as likely as others to put patients on the list.
But without such information being collected and released nationally, it is impossible for a patient to know how their chances may vary from center to center.
Crucial differences in wait-listing criteria can be invisible to patients. While kidney transplant centers are unlikely to wait-list patients who have medical conditions that plainly jeopardize their chances of surviving surgery, many other criteria can vary.
Under federal Medicare and Medicaid regulations, transplant centers are required to have written criteria that ensure “fair and nondiscriminatory distribution of organs,” but the rules do not specify what those criteria should be. Some wait-listing criteria may be defined as “absolute,” while others are “relative,” meaning they are not automatic deal breakers.
A kidney patient might be deemed too obese to be wait-listed at one center but will make the cut at another. In California, transplant programs have varying guidelines around whether they will wait-list elderly patients, a Times review found. Some insist that patients stop using drugs or alcohol for months before they are added to the waitlist, while others frown only on “active” use.
As an ailing patient, “when you’ve got limited time and capability to navigate all of this, who helps you figure that out?” said LaVarne Burton, president and chief executive of the American Kidney Fund. Transplant centers can also weigh murkier factors such as “social support,” for which there is no uniform manner of assessment, ethicists have warned.
The Organ Procurement and Transplantation Network ethics committee has cautioned that nonmedical criteria have been inconsistently applied and are susceptible to stereotyping.
Financial issues can also factor in, as transplant centers consider whether patients will be able to afford their expenses as they recover.
Bethany Edwards, 44, is a single mother who said she has been on disability payments for nearly two decades because of kidney disease.
One center turned her down, saying she wasn’t financially stable and didn’t have enough help for after the surgery. Another center told her, after she had struggled to make it to medical appointments required for assessment, that she would need a reliable vehicle of her own if she was to continue with the process, she said.
“I get they don’t want me to waste their time” by not making it to appointments, Edwards said. “But it’s also just not realistic.”
She used to clean houses and babysit but found it impossible to juggle work with the demands of dialysis at least three times a week.
Some California programs declined to provide waitlist criteria to The Times. Scripps Green Hospital in La Jolla called them “proprietary” but said it does provide them to patients. Sutter Health declined to provide specific criteria for California Pacific Medical Center Van Ness; Riverside Community Hospital, Loma Linda University Medical Center and Cedars-Sinai also declined.
Insurance delays
The National Kidney Foundation has urged transplant centers to make waitlist criteria more transparent so that patients can go where they have the best shot, especially if their health insurance limits how many evaluations they can undergo.
Federal regulations say transplant programs must provide their selection criteria to patients upon request, but many patients are unaware that they can request them, advocates say.
The evaluation process, which can require numerous assessments, can be slowed at many points by insurance authorizations and logistical holdups. The steps can be confusing enough that, in some cases, patients have mistakenly believed they were already wait-listed while still undergoing evaluation, researchers have found.
“One little test could not be performed, and you didn’t get the memo — and that could be preventing you from getting on the waitlist,” said Lori Hartwell, founder of the Renal Support Network.
Despite the high stakes, there is no requirement for transplant centers to assess candidates for the waitlist within a specific amount of time.
In Los Angeles County, Keck Medical Center of USC had indicated to Coleman that the process could take up to six months, but it wasn’t until last August — more than a year and a half after his initial orientation — that he was first told he was too “high risk” to be a transplant candidate at that time, although the center said it could reconsider if he took some additional steps.
Keck said it had reached out to ask Coleman for needed records before the August decision. But Coleman said he hadn’t been asked to provide specific documents until that fall and complained, “I have lost over a year during this tenuous period in my life.”
The 73-year-old also disputed Keck’s claims about his medical condition, pointing to information in the facility’s records.
Frustrated, Coleman turned to another program for help. Roughly five months after he was connected to Providence St. Joseph, he was eagerly anticipating its decision on whether he could join the waitlist.
Then he was thwarted again — this time by his health insurance company. It said the Providence transplant center was not in its network, despite having initially authorized Coleman to go to that hospital.
Closing racial gaps
Across the country, the wait-listing rate fell after the rollout of key changes to the kidney allocation system, researchers have found. Among them: Waiting time is now calculated based on when patients started dialysis, not on when they got onto the waitlist.
The changes have been credited with closing gaps between Black, Latino and white patients getting transplants once they’re on the waitlist, but researchers have suggested they may have lessened the sense of urgency to wait-list patients who just started dialysis.
Danovitch, asked about the decline in wait-listing, said there could be a greater proportion of people who have too many medical problems to undergo transplant. Schold disagreed, saying that although the precise number of kidney patients eligible for transplant is unknown, there is clear evidence that eligible patients are being bypassed.
Mohan argued that because the regulatory system has monitored transplant centers for getting the best outcomes after an organ is transplanted, but never tracked how many patients are shut out from the waitlist, the system has grown increasingly selective, focused on delivering the best results to the lucky few who are wait-listed and chosen for transplant, rather than maximizing the benefits for as many patients as possible.
At the same time, more donated kidneys are not being used. UNOS researchers previously found that much of the rise in discards over decades is due to an expanded pool of kidney donors, but the results also suggested that “a significant number of opportunities for kidney transplant are missed.”