Officials from the United Network for Organ Sharing, a federal contractor responsible for overseeing the nation's transplant system, said this week that they were not notified of the need to move hundreds of patients to the giant HMO's new program until September 2004, after it had already opened.
"This is an unprecedented situation," United Network spokesman Joel Newman said in an interview. "Normally when transfers are addressed, we handle them in onesies and twosies, as they come up."
The transition was further complicated by Kaiser's own paperwork, which was full of "errors or inconsistencies," Newman said in an e-mail to The Times. Some of the patients Kaiser tried to transfer into its program weren't even listed in a national database of people waiting for a kidney, he added.
The network requires detailed patient information from a medical center, as well as a patient's written consent, before it will process a transfer.
Hundreds of Kaiser patients were never told that their transfers had not been processed, in effect placing a new kidney out of reach, according to interviews and documents. But many patients and relatives were suspicious, they say, because the cases seemed stalled and their telephone calls to Kaiser were not returned.
After learning in recent days about what happened, some expressed outrage.
"Considering the large amount of patients that have Kaiser as their HMO, they should have realized the impact and have been better prepared," said Elizabeth Porras, whose husband, Ruben, had been on the verge of a transplant at UC Davis.
After being instructed by Kaiser not to see its transplant patients any more, UC Davis placed Ruben Porras and 66 other Kaiser patients on inactive status in November 2004, rendering them ineligible for a transplant. But Porras' transfer didn't come through until September 2005.
Less than a month later, he died.
"In my opinion Kaiser gave my husband a death sentence," Porras wrote in an e-mail Thursday to The Times.
Kaiser was under no obligation to notify the United Network that it would be submitting a mountain of paperwork related to patient transfers. Nor were there any rules specifying how quickly the HMO's transplant center could grow or how much information it must give patients.
As a result, the United Network was virtually blindsided by Kaiser's rapid roll-out. The organization was forced to quickly cobble together a new computer program just to handle the Kaiser caseload, Newman said.
As of September 2005, a year after the Kaiser center opened, about 330 Kaiser patients had still not been properly transferred because the HMO submitted flawed or incomplete paperwork, the network said. Even so, the agency never stepped in to stop the transition, nor did it investigate whether patients were being harmed by the move.
Because the transfer process bogged down, many patients didn't get prompt credit for the time they had been waiting for a kidney. In San Francisco, kidneys are primarily allocated based on how long a patient has waited.
When waiting time is not transferred through the United Network from one program to another, it appears that a patient is a new addition to the list. The patient is then placed at the bottom, pushing a transplant years into the future.
James Klinkner was determined not to lose his place in line.
When he got word of Kaiser's new program, he quickly sent in a form to the HMO so he could receive credit for three years of waiting at UC San Francisco. But the form apparently was not processed, said his son, J. Hadrian Klinkner.