The little-known organization that oversees the nation's organ transplant system often fails to detect or decisively fix problems at derelict hospitals -- even when patients are dying at excessive rates, a Times investigation has found.
When it does act, the United Network for Organ Sharing routinely keeps findings of its investigations secret, leaving patients and their families unaware of the potential risks, interviews and confidential records show.
"It seems like UNOS is often a day late and a dollar short," said Dr. Mark Fox, associate director of the Oklahoma Bioethics Center and former chairman of the UNOS ethics committee. "Most people are kind of shaking their heads and saying, 'Who's minding the store?' "
In the past year, UNOS has been blindsided by life-threatening lapses at centers it oversees. After The Times uncovered such problems at two California programs, both abruptly closed.
UNOS' failures in those cases are part of a larger national pattern of uneven and often weak oversight. At times, the group appears more intent on protecting hospitals than patients themselves, the newspaper has found.
Since 1986, the federal government has contracted with UNOS to oversee everything from how organs are harvested to where they end up.
It is a daunting job. The competition for scarce organs is growing. And because the stakes are so high -- life or death for patients, prestige and millions of dollars for hospitals -- the temptations for transplant centers to bend or break the rules are ever-present.
As the overall arbiter of safety and fairness in the country's transplant system, UNOS has the power to issue public rebukes and urge the government to close troubled programs.
But it has shown itself a reluctant enforcer, according to a Times review of confidential UNOS documents and interviews with dozens of past and present board members, transplant doctors, patients and others.
* UNOS has never recommended that the government close an active transplant program.
Since 2000, the nonprofit organization has considered revoking the "good standing" of at least 15 transplant centers -- its most serious public sanction and a potentially embarrassing blow to a hospital's reputation. But it has followed through just once -- in March. In that case, St. Vincent Medical Center in Los Angeles had arranged for a liver transplant candidate to jump ahead of dozens of others in line for an organ.
* Even after programs log high death rates, years sometimes pass before UNOS takes meaningful action.
UNOS, for instance, was aware by 2002 of potentially lethal problems in the kidney program at Sunrise Hospital and Medical Center in Las Vegas, but four years passed before the regulator performed its own inspection. In the meantime, patients were dying at rates UNOS knew to be unacceptably high.
* UNOS often backs down after being challenged -- or even defied -- by medical centers it is supposed to regulate.
Children's Hospital of Wisconsin in Milwaukee refused UNOS' repeated calls to shut down its lung program in 2004. It wasn't performing any transplants, yet kept children on its waiting list, effectively putting them out of the running for critical surgeries. UNOS threatened its most serious public sanction. The final punishment: confidential probation.
* UNOS officials have missed obvious red flags, including troubling transplant center statistics available on its own website.
UNOS statistics showed that Kaiser Permanente's new kidney program in San Francisco was in serious trouble last year: Twice as many patients had died awaiting transplants as had received them. Other California programs showed the opposite pattern: Twice as many people received transplants as died.
UNOS didn't launch an investigation until May, after The Times detailed the program's failings. The program closed that same month.
Celia Scull, 61, said she is angry that UNOS didn't know enough to step in earlier. "I find that appalling," said Scull, a Kaiser transplant candidate from Sacramento who now is transferring to another center. "Does it upset me? You bet it does."
Similarly, UNOS was unaware of the severity of problems within the liver program at UCI Medical Center in Orange. With no full-time surgeon to do transplants for more than a year, UCI turned down scores of organs that might have saved patients on the waiting list. The day the problems were reported in The Times in November, the program closed.
UNOS leaders say they have been embarrassed to learn about serious failings of their organization in the paper.
Executive Director Walter Graham described the recent troubles at California centers as a "watershed" for UNOS. The problems were "hurting public trust," Graham said. "There has been this escalating desire to stop that. The sense of outrage has grown in the transplant community."