State regulators Wednesday ordered Kaiser Permanente to fix communication foul-ups stemming from the abrupt suspension of its Northern California kidney transplant program after learning that some patients were unable to get satisfactory answers to their most basic questions.
Days after Kaiser and regulators promised patients a smooth transition to outside programs, The Times found that anxious callers had trouble getting through to a 24-hour hotline or had been given baffling, incorrect or useless information about their care.
In response to the problems identified by the newspaper, the state Department of Managed Health Care told Kaiser to beef up its hotline staff “by whatever means necessary,” improve the quality of information provided to patients and guarantee that a knowledgeable clinician is available to respond to questions within 48 hours.
“This has been all hands on deck,” said Cindy Ehnes, director of the managed care department, adding that she would be personally involved in correcting the problems. “Everybody’s scrambling.”
Ehnes encouraged patients with unresolved complaints to call her department’s help line at (888) HMO-2219.
Kaiser announced the program’s suspension Friday after a series of reports in The Times found that patients were imperiled in mid-2004 when the HMO ordered about 1,500 of them to transfer to its new center in San Francisco. They had been treated in established programs at UC San Francisco and UC Davis, under contract with Kaiser.
In announcing the suspension, Kaiser officials said they sought to ease patients’ worries about their care. They promised that a hotline would be staffed “24/7" to answer any questions or concerns.
But Walter Jewell said that he called the hotline an hour after it opened and that no one answered.
Archie Graham said that when he phoned days later, complaining that Kaiser had relied on the media to alert the 2,000 patients on its waiting list of the shutdown, an operator said: “I totally agree.”
And when a staffer returned a call from Phillip Maxson and his wife, Marianne, the couple said the woman was unable to answer their questions, because she had been on the job just three days. Instead, they said, she offered excuses for Kaiser’s poor performance -- citing, among other things, a dearth of cadaver organs caused by tough auto-safety standards.
“I almost dropped the phone,” said Marianne Maxson. “She was some poor chump they hired to read this script.”
Kaiser officials conceded Wednesday that there were problems with their hotline -- (800) 390-3508 -- and said they were working with the managed care department to fix them.
“We’re going to be very clear about what our people tell people at the other end of the line,” said Rick Malaspina, a Kaiser spokesman.
Some patients said they felt whipsawed by Kaiser’s rapidly changing statements over the last two weeks.
As of the middle of last week, the giant HMO was touting the quality of its program and doctors were calling patients to assure them that they had no reason to worry. A few days later, patients said, they learned from the news media that the program was closing.
Patients aren’t the only ones feeling confused.
Dr. Stephen Tomlanovich, medical director of the renal transplant service at UC San Francisco, said that during a meeting Monday, Kaiser officials vowed to phone all of the HMO’s transplant patients to inform them of what was happening with their cases. (UC San Francisco stands to receive the bulk of Kaiser’s patients; the rest will go to UC Davis.)
“We were led to believe that Kaiser was going to be actively calling patients to explain to them what was going on with the transplant program,” he said.
Malaspina said Wednesday that the HMO had no such plans -- even for patients close to receiving a transplant. Instead, Kaiser will soon send out form letters explaining the transfer process, he said.
Kaiser plans to continue performing transplants for willing patients until the transition is complete.
The transfer process is not simple, and if carried out improperly, can harm patients’ prospects for a kidney. Hospitals must fill out forms with personal information on each patient they accept. Patients must also give written consent to have credit for their waiting time -- a key factor in obtaining a kidney -- transferred to a new program.
When Kaiser opened its program, it submitted many incomplete and inaccurate forms, delaying the transfer for hundreds of patients. These patients were essentially cut off from transplants for months.
And 25 patients who had been treated at UC San Francisco were denied the chance to receive kidneys that were ideally matched to them because Kaiser directed the university to reject the organs during the transition between programs.
With the current confusion, Tomlanovich said he is worried that a patient could lose a chance for a kidney.
“I want to believe that the patient will not miss an opportunity,” he said. “I don’t know that this is not going to be a possibility.”
UC Davis officials, who met Tuesday with Kaiser representatives, said they are doing everything possible to make sure the transition goes well.
“We want to do it right,” spokeswoman Carole Gan said. “Nobody wants what they did. Nobody wants another Kaiser.”
That’s Erin Cronshagen’s worry. “I just feel like I’m in limbo right now,” said the 31-year-old medical assistant who has been waiting more than four years. “We’re not just pieces of paper.”
Cronshagen, who had her first kidney transplant at age 7, said she has faith in UC San Francisco but not in Kaiser. “I just don’t understand how all of that is going to work. I don’t think [Kaiser officials] know what’s going on either, which is really sad.”
Ana Polanco could use some reassurance right now.
She said thrice-weekly sessions of dialysis had sent her husband, Victor, into a suicidal depression that was only eased by intensive psychotherapy and constant reassurance from Kaiser that he was on the verge of getting a kidney.
“They say, ‘Victor, you’re No. 1 on the list.’ They’ve been telling him that for about five months,” she said.
But since the San Francisco couple learned of the program’s suspension, they said, they’ve heard nothing -- and Ana Polanco fears that the delay will affect her husband physically and mentally.
“We have not heard from Kaiser, ‘I’m sorry, Mr. Polanco,’ ” she said. “I hope [the transition] works, because I’m very worried.”
Some patients say Kaiser has treated them well and they’re confident the switch to the UC programs will be successful.
Jessica Collins, a 50-year-old teacher from Hayward, said that even though she’s been on the waiting list 10 years, she’s in no hurry to get a kidney.
“I just am doing fine on dialysis,” she said, adding that her primary concern is whether a new kidney will work if she gets one.
Collins said that she has no problem moving back to UC San Francisco but that she’s been happy at the HMO. “I have no problems with Kaiser,” she said. “None.”
A spokesman for the United Network for Organ Sharing, a federal contractor that oversees the nation’s transplant system, said Wednesday that officials have had “very preliminary” discussions with Kaiser about how to transfer patients to the UC hospitals but that nothing has been put in writing.
“A lot of those logistics need to be worked out,” Joel Newman said.
Among the questions that regulators and doctors are still considering: Are the UC hospitals willing to take the Kaiser patients they previously treated without evaluating them first? Will the patients who have been solely on Kaiser’s list need to be seen by the UC programs before their care can be transferred?
Physicians involved with the Kaiser transplant center have declined to comment about the transition or anything else. Head surgeon Arturo Martinez, who started up the program, told a Times reporter, “You should be ashamed of what you’ve done,” before hanging up the phone.
Phillip Maxson is trying not to get too frustrated. But as the days slip by, he is feeling desperate. His wife’s company has been sold, and she is losing her job June 30. That means he will lose his health insurance. It is unclear whether transitional coverage will pay for a transplant.
Since Friday, he said, he has spent hours on the phone trying unsuccessfully to find out his fate from Kaiser.
“It’s like trying to talk to a used car salesman after you bought the car,” he said.
Tracy Weber may be reached at email@example.com; Charles Ornstein at firstname.lastname@example.org.