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Couple wins HMO battle for needed brain surgery This story appeared in the Antelope Valley Press April 12, 1999.

By RICH BREAULT Valley Press Senior Writer

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They are relieved, but it is hard to be elated when you've been put through the wringer of a health maintenance organ­i­za­tion.

An "external review board," made up of medical experts with no ties to either Kaiser Permanente or the couple, only recently ruled that the HMO must pay for the surgery, which is being scheduled at UCLA Medical Center.

Hoffman learned of the board's decision on Tuesday morning.

"That's what we've been hoping for," Hoffman said. "That's what we've been fighting for."

Jim Anderson, a spokesman for Kaiser Permanente, said it was a case of "two sets of doctors believing in two different surgeries."

"Each set of doctors believed that their form of surgery was better," Anderson said. "Everybody is looking out for the patient. This is a case where there are two good procedures. Because the review board ruled for the requested surgery this time, it doesn't mean it would rule the same way in another case the next time."

The couple's denial appeal to Kaiser Permanente's Expedited Review Department was also denied.

In the explanation of denial letter, dated March 10 and sent to the couple, Kaiser Permanente wrote:

"After a thorough review of relevant documents, and in consultation with our experts within the Kaiser Permanente Medical Care Program, it was determined that the treatment Mr. Savoria is requesting from UCLA is not considered to be a more effective treatment than debulking of the tumor, followed by chemotherapy, if necessary, which is available within the plan. . ."

Anderson said that Kaiser Permanente's denial decisions were not "money-based decisions."

"Money does not as a rule, guide the decision of our doctors," Anderson said.

Savoria and Hoffman believe differently, and said they weren't about to "go down without a fight."

The Lancaster couple fought almost every step of the way during Savoria's illness. Not just to get the specialized surgery that uses a "live" MRI during the procedure, but also Savoria's first two brain surgeries, as well as a proper diagnosis.

"Dealing with Kaiser was the first time I've felt like nothing more than a number," Savoria said.

"We've found out about the `HMO nightmare' people talk about." Hoffman said.

Delayed diagnosis

The couple's family nightmare began on Aug. 28 of last year, after Savoria was stopped by Edwards Air Force Base police for "weaving" on Rocket Site Road, on the base's east perimeter.

Earlier that day, Savoria had been at the Lancaster Staples to copy some documents, but became disoriented and couldn't operate the machine. He gathered the papers and got into his van to drive to his home on Lancaster's east side.

An hour-and-a-half later, he was stopped near Edwards on a road he had never been on before. He had no idea how he got there. Savoria was detained and examined by medical personnel. Soon after, Hoffman was called and told her husband of nearly 30 years was in custody.

"I was told he would only be released if I could pick him up," Hoffman said. "They said he was in no shape to drive."

"I knew I was hallucinating, I kept seeing the lettering on the documents I was going to copy all over the walls of the car," Savoria said. "I didn't know where I was. I was just trying to get through it, that whatever was happening would go away. The more I drove, the worse it got. I was trying to get hold of reality, but I couldn't.

"When the Air Force police called out to me over their loudspeaker. I asked them, `Is this Lancaster?' Right then I felt like Dorothy in the Wizard of Oz - `I don't think we're in Kansas anymore.' "

Hoffman took her husband to Kaiser Permanente's urgent care clinic in Lancaster for diagnosis and to his primary care physician a few days later.

Hoffman said her husband's physician "explained away" his symptoms by saying there were many cases of heat stroke and dehydration going around the Valley in the hot weather. He asked for a CT-scan, but the doctor denied his request.

Savoria continued having headaches and bouts of disorientation and went back to the physician on Nov. 11. Hoffman said the physician told them that her husband "needed new glasses."

"Two days later he was flat on his back, completely nonfunctional, with such headache pain that he told me he thought he was actually going to die," Hoffman said.

She contacted a patient advocate at Kaiser Permanente and was told that a doctor had to write up a referral for the CT-scan. It was arranged for another doctor to authorize the referral.

On Nov. 16, Savoria was given a CT-scan at the Kaiser Permanente facility in Panorama City. It showed a tangerine-size malignant tumor in his brain.

No beds

"We asked for an MRI-live assisted surgery, but only UCLA Medical Center and Long Beach Memorial Hospital have the equipment to do that surgery," Hoffman said. "However, Kaiser had a similar system to assist the surgery in a `live' manner and arrangements were made for the surgery."

During Thanksgiving weekend, while waiting for the surgery, Savoria's condition worsened and Hoffman took him to the Kaiser Permanente facility in Lancaster.

Doctors there couldn't get authorization for Savoria to go to Kaiser Sunset Medical Center for the surgery and were told to send him to Antelope Valley Hospital.

"Kaiser said they had no more beds in the emergency room, so they refused him," Hoffman said. "An emergency brain surgery was done at Antelope Valley Hospital and very little of the tumor taken out.

"Because they refused to admit him at Kaiser, he ended up getting a type of surgery that was not what we wanted, or was needed."

In mid-December, Savoria's condition necessitated another "debulking" surgery, this time at a Kaiser Permanente hospital. But the procedure to have been used at the first scheduled surgery couldn't be done - Hoffman was told it could only be done during a primary surgery, not subsequent ones.

"Neither surgery took enough of the tumor out to really help him, so we requested the MRI-live assist surgery at UCLA," Hoffman said.

Savoria's request for the surgery was denied and Kaiser Permanente offered another debulking brain surgery.

"They said they didn't want to harm the patient or destroy his motor or vital functions," Hoffman said. "With the MRI-live assist surgery, doctors can define the tumor and take out more of the tumor than Kaiser's procedure.

"We heard about a man from Las Vegas who had the surgery at UCLA and he went from a life expectancy of 90 days to anywhere from a year and a half to five years. That's the same chance we wanted for Robban."

Savoria and Hoffman appealed Kaiser's decision, but once again the request for the UCLA surgery was denied by Kaiser Permanente.

"If it wasn't for the decision of the external review board, we wouldn't be having the surgery he needs," Hoffman said

Fighting the fight

Savoria agreed.

"The whole thing has been frustrating and horrifying. Imagine thinking that doctors don't know what they're doing," Savoria said. "They were playing around with my head. It's hard to trust them after that. They induced fear in me."

Hoffman related a meeting with an HMO doctor who "said most people in our situation would take a vacation and spend their last days together."

"Robban asked, `Was he pulling a Dr. Kevorkian on me?' Basically, they were writing him off," Hoffman said.

Savoria said during the meeting with the doctor, he looked over at his 28-year-old daughter and "she had a very poignant look on her face."

"At first I wondered if this was it. If this was the end? But I knew it couldn't be that hopeless," Savoria said. "Then I got angry after I thought about what he said - what an insulting thing to talk about in front of the patient and family."

Many of the couple's friends joined in their fight. Some friends embarked on a pledge campaign that would raise the $38,000 needed for the specialized surgery. Another friend searched the Internet for any information that would help Savoria and Hoffman.

"We even had about 100 people ready to picket in front of Kaiser," Hoffman said. "It never, ever, should have gotten to that point.

"When we're young, we're taught we can trust our doctors, teachers, policemen, firemen and our parents. But we've found out in a big way that you can't trust your doctors. Not when HMOs and money are involved."

Savoria said that his wife "is my savior."

"I couldn't have done it alone," Savoria said. "Someone out there heard our prayer."

"I'm his medical and legal advocate in all this," Hoffman said. "I fight the fight. It's his job to get well.

"I thank God I was able to be there for him. But what if he was single? Or divorced? He'd have been lost. A casualty . . . like many others who can't fight the fight."

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