In mid-2004, more than 1,500 Kaiser Permanente patients awaiting kidney transplants in Northern California got form letters that forced them to change the course of their treatment.
Kaiser would no longer pay for transplants at outside hospitals, even established programs with thousands of successes. Instead, adult patients would be transferred to a new transplant center run by Kaiser itself -- the first ever opened by the nation's largest HMO.
Within months after Kaiser's kidney program in San Francisco started up, its waiting list ranked among the longest in the country. No other center had ever put together such a list so fast.
The patients didn't know it, but their odds of getting a kidney had plummeted.
Kaiser's massive rollout in Northern California endangered patients, forcing them into a fledgling program unprepared to handle the caseload, according to a Times investigation based on statistical analyses, confidential documents and dozens of interviews.
Hundreds of patients were stuck in transplant limbo for months because Kaiser failed to properly handle paperwork. Meanwhile, doctors attempting to build a record of success shied away from riskier organs and patients, slowing the rate of transplants performed.
National transplant regulators apparently did not notice the program's failures, though some were obvious in the statistics the regulators themselves posted on the Internet.
In 2005, the program's first full year, Kaiser performed only 56 transplants, while twice that many people on the waiting list died, according to a Times analysis of national transplant statistics.
At transplant centers statewide, the pattern was the reverse: More than twice as many people received kidneys than died.
Kaiser also suffered by comparison to the two outside hospitals that previously had tended to its Northern California patients. In each of the two years before Kaiser opened its program, UC San Francisco and UC Davis medical centers together performed at least 168 transplants on Kaiser patients, three times as many as Kaiser managed in its first full year.
"If they couldn't handle as many as they were doing before, they should have just transferred some" patients, said Neva Smith, whose daughter, Alison Bertino, was moved to Kaiser from UC San Francisco.
Bertino, 30, died last June while waiting for a kidney.
It is difficult to say whether she or any other Kaiser patients died as a direct result of the program's faltering start. What is clear is that many fewer patients received transplants than before, forcing them to remain on grueling sessions of dialysis to remove impurities from their blood. Prolonged dialysis can lead to deadly complications and decrease the chances of a successful transplant later.
The problems at Kaiser went beyond mere growing pains, current and former employees said: Surgeons and kidney specialists battled over who should receive transplants. Desperate patients complained of inexplicable delays. Since the program opened, 10 permanent employees have quit or been fired out of a staff of 22.
"On the outside, the program seems to have settled into a reasonably functioning unit," kidney specialist Dr. W. James Chon wrote to the hospital's physician-in-chief Jan. 23, not long before he was placed on administrative leave.
"However, a closer look at the program will show that it is suffering from very serious and potentially explosive problems," he said.
In interviews with The Times, Kaiser officials initially denied that there were problems. "Everything has been going on track," head transplant surgeon Arturo Martinez said last week.
Since then, other officials have acknowledged that the program had provided The Times with incomplete or misleading information. The chief physician at Kaiser's main San Francisco hospital conceded that the issues were "very serious."
"Time will tell whether 'explosive' was an appropriate adjective or not," said Dr. Bruce Blumberg, referring to Chon's letter.
But, he said, the problems have not affected care for the patients on the waiting list, now totaling about 2,000. No patients have died after transplants, and surgeons hope to boost their output to about 90 transplants this year, Blumberg said.
"I'm very pleased at the work done by the transplant program in the first year," he said.
Kaiser's troubled launch -- coming to light after scandals forced the closure of two transplant programs in Southern California last year -- underscores the dearth of oversight in the field of transplantation.
Leaders of the United Network for Organ Sharing, the federally funded group responsible for the nation's organ transplant system, said they knew nothing of Kaiser's woes until The Times contacted them.
Dr. Andrew Klein, director of transplant programs at Cedars-Sinai Medical Center in Los Angeles and a member of the network's board, said moving patients to new centers should never compromise the care they receive.
Just "because they had to change centers they shouldn't have to change their [chances] of getting transplanted," he said.
'Timing Was Perfect'
The jump into transplants made good sense for Kaiser.
The San Francisco hospital's open-heart surgery program was shrinking as less-invasive procedures became more popular. Kaiser was left with unused beds and operating rooms. By chance, Martinez, a transplant surgeon at Sharp Memorial Hospital in San Diego, broached the idea with Kaiser officials in early 2002.
"The timing was perfect," Blumberg said.
In August 2003, officials told the media that they could do a better job for their kidney transplant patients by working with the network of doctors, labs and pharmacies serving Kaiser's 3.2 million members in Northern California. (Kaiser still contracts with outside hospitals to serve transplant patients in Southern California and elsewhere.)
"We should be able to achieve higher outcomes," Dr. Sharon Inokuchi, the transplant program's new medical director told the San Francisco Business Times at the time. In the long run, officials said recently, they believed they could save money too.
Kaiser members are part of a unique healthcare entity that runs both a health plan and a hospital system. Except in rare circumstances, members get their care only from Kaiser hospitals and affiliated Permanente medical group doctors.
In June 2004, Kaiser informed kidney patients on waiting lists at UC San Francisco and UC Davis that from then on their transplants would take place at Kaiser's hospital northeast of Golden Gate Park in San Francisco. The first transplant was performed that October.
Relatives of some patients recalled the letters offering no promises and little comfort.
Patient Rodney Clay's letter began with the salutation, "Dear Clay, Rodney," and warned: "You will be financially responsible for any kidney transplant services you receive from the University of California, San Francisco, after Sept. 1, 2004."
Clay died in September 2005 after being forced to move to Kaiser and then being shifted back to UC San Francisco because of complications.
"It was just messy the way that they handled it," said his wife, Deborah. "We were in a state of shock."
Art Hanson also complained about the handoff. He said his life partner, Rodante Tolentino, "got in a snit" with Kaiser officials.
"They wanted him to break his ties [with UC San Francisco] and have nothing to do with them, and it was like, 'You either do what we say or screw you,' " Hanson said. Tolentino, who had been on UC San Francisco's list since 1998, grew tired of waiting and went to the Philippines in search of a transplant last fall. By that time, he was too sick, Hanson said. Tolentino refused dialysis and his medications and died in November at age 61.
Hope Turns to Dismay
Not everyone was dismayed about the switch to Kaiser.
When Ruben Porras, a pressman at the Sacramento Bee, found out that he was being transferred from UC Davis, his family thought it might improve his chances of getting a transplant, said his wife, Elizabeth.
After three years on the waiting list at UC Davis, he was close to getting a new kidney there.
"It's likely that he would have been transplanted fairly soon," said Dr. Richard Perez, chief of the UC Davis transplant center.
The family's anticipation soon turned to frustration.
"Nothing happened," Elizabeth Porras said. "Everything stood still. I lost faith in it all."
Although her husband, who was in his 40s, was on the list for a cadaver kidney, several of his relatives were willing to donate one of their own kidneys, and UC Davis had been assessing them, she said. That process halted when Kaiser took over Porras' case and relatives' calls went unreturned, she added.
Porras and 66 other UC Davis patients unwittingly faced another obstacle. Organs are distributed regionally, and the waiting time for a kidney in the crowded San Francisco area is about double that in the Sacramento area, where UC Davis is. Elizabeth Porras said her husband was never told that his wait would jump from about three years to a possible six with the move to Kaiser's new center.
The transfer hurt Porras' chances in another way.
In the San Francisco area, kidneys are primarily allocated based on how much time patients have spent on a master waiting list. When patients switch to other programs, it is essential that they get credit for the time they've already spent waiting. Otherwise it will appear that they are new additions with no seniority, and their waits will start from scratch.
In Porras' case, Kaiser took nearly a year to transfer the time he had spent on the waiting list at UC Davis, Perez said. That meant he landed at the bottom of the list in the San Francisco area, putting a new kidney out of reach any time soon.
The same was true for hundreds of others at UC Davis and UC San Francisco who were stranded between programs for months by Kaiser's delays or paperwork snafus, the Times investigation found.
Even today, UC San Francisco has about 220 Kaiser patients on its list whose time has not been properly transferred to Kaiser, said Dr. Stephen Tomlanovich, medical director of the university medical center's renal transplant service.
Tomlanovich said UC San Francisco has contacted Kaiser's Inokuchi or her co-workers repeatedly by phone, fax and e-mail concerning the patients. But Inokuchi said she has never heard from the university hospital about these patients.
Regarding Porras' case, Inokuchi said she could not comment because of confidentiality restrictions.
But chief surgeon Martinez said, "We made every possible effort to make sure that people were not caught in the middle."
Unaware of this fumbling, Porras was tethered to dialysis, weathering one complication after another.
"There's no other life out there for you other than being treated," his wife said. "He had no energy to do anything, go anywhere or do things for himself."
Cost of Survival Rate
One statistic Kaiser proudly cites is its patients' survival rate after transplantation: None of its patients have died in the year after their surgeries.
"I got great care there," said Hamilton Meek, 56, who got his kidney at Kaiser in March. "I just knew it was a matter of time before I got the kidney."
Maintaining that survival record, however, appears to have come at a price.
Through June 2005, Kaiser accepted only 16.7% of the kidney offers on behalf of its patients, far less than neighboring programs: California Pacific Medical Center accepted 29.5% and UC San Francisco 24.1% in the same reporting period.
Many experienced programs, with the consent of patients, also accept organs from a separate pool of risky donors -- older people, for instance, or people with health problems. The idea is to cut patients' waits.
Kaiser almost never tapped into this pool, which supplied kidneys for 15% of transplants in the Bay Area last year, according to the local organ bank. Through December, Kaiser had accepted just one.
Kaiser chief surgeon Martinez said that's because only one patient had signed up.
Officials from UC Davis and UC San Francisco said their numbers show that many Kaiser patients had, in fact, been interested. At UC Davis, before Kaiser started its program, 20 Kaiser patients had signed up for the organs; at UC San Francisco, 23.
Ella Haynes said her husband, Ronald, had signed up to receive two of these riskier kidneys at UC Davis. But when he transferred to Kaiser, the couple were told that the former Central Valley trucker "would be better served to wait it out and get one good kidney."
"You just believe what you hear and what you're told," Ella Haynes said.
In March 2005, her husband died of a blood infection.
Although he never knew it, he didn't have a chance. His 2 1/2 -year wait at UC Davis was never transferred to Kaiser, said Perez of UC Davis, effectively shutting him out of a transplant.
Inside the Kaiser center, the stress of jump-starting the massive program took a toll.
Although Kaiser officials had brought in experienced physicians, much of the core staff had never worked with transplant patients -- or one another.
In early 2005, the program's first transplant administrator left. Barely a year later, her replacement was terminated.
One kidney specialist, Dr. Eric Savransky, walked off the job this February, cleared out his office and has not returned, colleagues said. Officials say he is technically on leave.
Chon, the physician who complained of potentially explosive problems, was also put on leave in February after feuding with medical director Inokuchi about the way the program was being run, current and former employees said.
In his January letter to the hospital's top physician, Chon described staffers battling over which patients should receive transplants.
One 73-year-old woman, he wrote, had been waiting, initially at UC San Francisco, since 1999. Chon said he and his colleagues felt that although she was a high-risk patient, she was a viable candidate. But Inokuchi refused to sign off, he wrote, until she saw additional medical records -- which Chon said were irrelevant.
"I truly believe that [Inokuchi's] decision to overrule four other transplant physicians was unjust and unethical," he wrote in his letter.
In an interview, Inokuchi said Chon had "incomplete information" and could not make a proper assessment. Chon said he stands by his letter.
The patient's daughter, Karen Sorensen, said she is incensed at Kaiser's treatment of her mother, Corra Mayo. First, she said, no one from the hospital tried to contact Mayo for eight months after she was transferred from UC San Francisco, where she had been near the top of the waiting list since early 2004.
Then, Sorensen said, Kaiser staff couldn't find Mayo's medical records and didn't return repeated phone calls. Finally, the daughter said, she begged a receptionist for help and her mother got an appointment with Chon.
"They had too many people to handle, and they don't know how to handle them," Sorensen said.
Mayo, now 74, has been undergoing dialysis three times a week. "It's the worst way to live," Sorensen said. Late Monday, Mayo was called into the hospital to be prepared for a transplant, but it is unclear whether she will receive one.
Blumberg, the hospital's ranking physician, said the dispute over Mayo's care demonstrates the staff infighting plaguing the program.
He also said Inokuchi had been "relieved" of her administrative duties to focus on patient care. He did not elaborate.
With all the departures, Inokuchi is the only kidney specialist left to manage patients' care in the hospital after their transplants, see them for checkups, handle calls for medical advice, review lab results and evaluate patients.
Blumberg said he is seeking additional kidney specialists, called nephrologists, and has offers out to two.
Transplant surgeons at other hospitals say programs of Kaiser's size would have trouble functioning without at least four or five transplant nephrologists. Cedars-Sinai, for example, has a waiting list less than a quarter the size of Kaiser's but has three nephrologists and is hiring a fourth.
Too Late for Patient
That Kaiser's problems are now becoming public is of little comfort to Elizabeth Porras.
Last fall, her husband developed an infection related to his dialysis. Despite attempts to treat it, he died Oct. 20 at age 47.
Each Sunday, she takes roses to his grave.
Her last contact with Kaiser came right after Ruben's death. A representative called to ask if she would donate his organs.
"I was really close to telling them, 'Yeah, you can have his kidneys,' " she said.