"I don't know what's going on here," Bernard Burks wrote to Kaiser Permanente's kidney transplant program last October, "but whatever it is, it's wrong."
Burks, 56, was among hundreds of patients forced to shift to Kaiser's new San Francisco program about a year earlier, when Kaiser stopped paying for their transplant care at outside hospitals. He feared that his chances of getting a kidney were slipping away.
Months passed and he grew increasingly agitated. The transplant coordinator handling the case "is worth about two dead flies," he wrote in March to the program's medical director.
Kaiser staff hadn't read their own files, he continued: "You stated in your letter, 'If you have a family member or friend who might want to discuss donation of a kidney for you, please have them call us.' Check your damn records. It appears you are a bunch of incompetents who fail to communicate with each other."
News about the flawed start-up of Kaiser Permanente's Northern California transplant program this week has unleashed bitter recollections and powerful emotions among patients who say that for months they have had their appointments inexplicably canceled, records lost and pleas met with eerie indifference.
Now they are more than frustrated -- they're fearful. And some want out.
"I don't want those guys cutting on me now," said Burks, a real estate appraiser in the Sacramento area. "I'm afraid.... I just don't trust them."
After The Times contacted Kaiser about Burks' case, the HMO set up a meeting with him for Tuesday to discuss moving his surgery to a different hospital, he said.
In mid-2004, Kaiser notified about 1,500 Northern California patients that they would have to move to Kaiser's fledgling transplant program from the well-established transplant programs at UC San Francisco and UC Davis, which had been caring for them under contract with the nation's largest HMO.
The transition has been fraught with problems, a Times investigation found. Since Kaiser took over, the number of transplants has plummeted, leaving patients on prolonged dialysis treatments, which can cause deadly complications and harm chances for a successful transplant later.
In the meantime, paperwork snafus meant that hundreds of patients' transfers were not processed. Some lost their place in line for months or were rendered "inactive" -- effectively ineligible for a kidney.
The patients, however, were never told of the problems.
Kaiser officials declined to comment Friday on specific patient cases but said they have begun an internal inquiry and plan to contact the more than 2,000 patients now on Kaiser's waiting list to invite their questions and concerns. They are also considering whether to allow the patients to go back to non-Kaiser transplant programs for their care, the officials said.
"We're taking this all very seriously," said Mary Ann Thode, president of the Northern California region of Kaiser Foundation Health Plan and Hospitals. "We absolutely want to have the best-quality program that we can possibly have."
Outside regulators have begun inquiries into Kaiser's conduct as well.
The United Network for Organ Sharing, the federally funded contractor that oversees the transplant system nationwide, started looking into the Kaiser program this week after The Times' articles ran, executive director Walter Graham said.
Separately, the state Department of Managed Health Care is investigating the reported problems at Kaiser's Northern California health plan. Spokeswoman Lynne Randolph said the agency is willing to intervene on behalf of individual Kaiser members. (Southern California Kaiser patients are not affected by the Bay Area program.)
Most patients in the Kaiser program were in line for cadaver kidneys from strangers -- a wait that typically takes up to six years. But some of the angriest patients today are those fortunate enough to have offers of live donations from relatives. If the organ is well-matched to the recipient, those patients usually get their transplants right away.
Kaiser Transplant Patients Express Their Fear and Fury
With reports of disarray added to their existing frustration, some don't want the HMO performing their surgeries.
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