Patients nationwide die waiting as 1 in 5 kidneys rejected by doctors
Every time the phone rings, Joyce Biearman wonders whether there's a kidney waiting for her.
Biearman, 57, who recently moved from South Fayette to Wheeling, W.Va., has lived like this for three years. About 4,300 people die on the kidney transplant waiting list each year, but she said she's not concerned that doctors throw out 2,600 donor kidneys annually.
“I really don't sit and think about the fact that maybe somewhere a kidney has been discarded because someone was overly cautious,” she said. “I never give that a second thought.”
Taxpayers paid $405.6 million through Medicare to the nation's independent organ procurement organizations for donor kidneys in 2012, and one in five of those 13,296 kidneys was discarded, a Tribune-Review investigation found.
A year before, the Center for Organ Recovery & Education, the organ procurer in O'Hara that serves Western Pennsylvania, most of West Virginia and Chemung County, N.Y., discarded 40 percent of 356 kidneys it obtained from donors — the highest percentage among independent procurers that year, according to Medicare cost reports the Trib obtained through a Freedom of Information Act request.
Surgeons turn down kidneys for many reasons, such as poor condition from older or sick donors and failing biopsy tests. Too often, though, the real reasons remain uncertain, experts told the Trib.
“We have a problem with discards in this country,” said Dr. Richard Formica, director of transplant medicine at Yale School of Medicine and chair of the kidney committee at the United Network for Organ Sharing, the federal contractor that regulates transplants nationwide. “... And we don't know why they're discarded.”
Either way, Medicare pays the nonprofit procurers for the kidneys.
Medicare pays for “nonviable” or discarded organs to promote donation and transplantation, spokesman Alper Ozinal said. A transplanted kidney is cheaper than the alternative: dialysis.
“Organ donation can be a lifeline for those patients seeking an organ transplant,” Ozinal said.
By 2012, CORE reduced its discards to 22 percent of the 338 kidneys it recovered, dropping it to 17th among the 51 independent organ procurers that report their performance to Medicare. Seven other procurers operate out of hospitals and do not file separate reports.
CORE became more selective about kidneys from donors older than 70 after the 2011 outcomes that put the organization tops in kidneys deemed unusable, CEO Susan Stuart said. But she said there always will be some discards.
“We will never reduce the discards to zero,” Stuart said. “If we reduce the discards to zero, then you are not giving every opportunity to evaluate the organs because you can't make final determination on some kidneys without the biopsy — and the biopsy doesn't take place until after the recovery.”
‘This will be the day'
More than 100,000 people are waiting for kidneys.
Biearman developed a rare kidney disease in high school and received a first transplant in 1998. The disease roared back a decade later, destroying the donated kidney and forcing her back on the list.
“It's really dragging this time,” said Biearman, a retired public relations executive. “My cellphone is always with me, thinking this will be the day I get the call.”
Biearman said she trusts her doctors and believes they want the best organs. In 2012, the hospital called with a potential match, but doctors decided against it. They did not provide details.
Lloyd Jordan Jr., a former Medicare auditor who heads Carolina Donor Services, a procurer in Greenville, N.C., said doctors often opt against organs after running tests and taking biopsies. More than a quarter of Carolina Donor Services' kidneys in 2012 were discarded.
“It's not like we're gaming the system because we know we're going to get paid,” Jordan said. “We're doing it because we want to make sure we're getting every transplantable organ, every time.”
‘Like buying a used car'
Researchers are baffled by the number of discards. Dr. Sumit Mohan, a kidney researcher at Columbia University in New York, said he suspects transplant centers sometimes are overly cautious. However, it's clear, he said, that procurers occasionally recover a kidney that has no chance of being used.
Tension exists between procurers that want to recover as many potentially usable kidneys as possible and transplant centers that can be punished for having too many bad outcomes.
“When you call a surgeon and say, ‘Here, I have an organ for you; do you want to use it?' the first thing the surgeon wants is an organ from a 22-year-old,” Mohan said. “They wouldn't want a kidney from a 65-year-old. It's like buying a used car.”
For someone older than 60 in need of a kidney, the donor's age matters less because the recipient most likely will die of natural causes with a functioning kidney, said Dr. John Friedewald, a transplant nephrologist at Northwestern Memorial Hospital in Chicago and former UNOS kidney committee chair.
“They don't really need to drive around town in a Ferrari,” Friedewald said. He called the rate of discarded kidneys “unacceptably high.”
The Scientific Registry of Transplant Recipients, a government contractor that collects procurement statistics, divides organs into two groups: standard ones and those from expanded-criteria, or riskier, donors.
Organ procurers that frequently recover kidneys from riskier donors often have a high percentage of unused kidneys, the Trib found by analyzing 2012 data from Medicare and the Registry.
More than a quarter of kidneys recovered by the Center for Donation and Transplant in Albany, N.Y., came from expanded-criteria donors in 2012. Nearly a third of its kidneys that year were deemed nonviable.
“Our primary goal is always to meet the tremendous need for suitable organs,” Michael Thibault, executive director of the Albany center, said in a statement. “... In certain instances, a complete evaluation cannot occur until the organ has been recovered and examined.”
Seven other procurer organizations had similar outcomes — at least 18 percent of their kidneys came from expanded-criteria donors, and at least 18 percent of their kidneys went unused. At CORE, 14.6 percent of its kidneys came from expanded-criteria donors in 2011, decreasing to 11.2 percent in 2012.
The Southwest Transplant Alliance in Dallas had the second-lowest percentage in 2012 of expanded-criteria donors at 6.8 percent — yet one-fifth of its kidneys went unused.
LifeShare Transplant Donors Services in Oklahoma City stood alone by recovering at least 18 percent of its kidneys from extended-criteria donors and having less than 10 percent unused.
Surgeons at transplant centers who decide whether to use kidneys have reasons other than a questionable organ for not taking chances. Medicare can punish centers that have higher-than-expected failure rates through warnings, probation and ultimately, payment cutoffs.
“We're told to use more organs,” Friedewald said, “but if they don't work, we get punished for it.”