A wife's Alzheimer's, a husband's obsession
Ken Chiate is a born problem-solver, and in the summer of 1961, when he was on break from college, his problem was a head-turning blond named Jeannette.
He was head lifeguard at a public pool in Phoenix, where his father owned a liquor store. She worked the bag check and ignored the moves he was making on her.
"She wouldn't give me the time of day," Chiate remembers. He finally got her attention by assigning her to clean the bathrooms.
They married four years later.
He went on to Columbia Law School, and they rose far from modest roots on his soaring success, eventually settling in a Malibu home with an ocean view and its own golf green. Each earned a reputation as a fierce competitor — Jeannette in golf and tennis at their country club, he in the courtroom.
His clients over the years included Shell Oil, Toyota and Bank of America. He was proud that an opposing lawyer had once described him as "dangerously brilliant."
Chiate tried to live life like he practiced law. Never show weakness. Never feel sorry for yourself. Every problem has a solution.
He felt in control of his destiny — until he wasn't.
Jeannette's difficulties seemed to emerge out of nowhere. She couldn't grasp the rules of a dice game. She kept asking questions her husband had just answered.
He had little patience for it at first.
But in 2001, at age 58, she was diagnosed with mild cognitive impairment. As months and years passed, she fell into an angry haze that was determined to be Alzheimer's disease. There was no cure.
"Stupid Jeannette! Stupid Jeannette!" she would scold herself. Sometimes she would lash out at her husband too, as if it were all his fault.
Chiate hated his wife's prescriptions and their cascade of side effects. He hated the way some friends began to pull away. Most of all, he hated being told by doctor after doctor that there was no way to stop her disintegration.
"I'm a fix-it guy," he says. "That's what I do. I fix people's problems. This was just a problem that needed fixing."
In 2006, he read an L.A. Times article about a new treatment for Alzheimer's. A doctor had reported dramatic improvements in 15 patients he injected with an arthritis drug. The newspaper story said the medication sometimes took effect within minutes.
The therapy had never been put to the rigorous tests of science, but the doctor, Edward Tobinick, didn't hold back his excitement. "The results we've seen are unprecedented with any kind of treatment," he said.
Chiate called for an appointment.
In a suite at 100 UCLA Medical Plaza the next week, he shook hands with the doctor for the first time. He was shorter than Chiate, a commanding, athletic presence.
The drug Tobinick was using, Enbrel, was already bringing in billions of dollars a year for Amgen Inc. It works by neutralizing TNF, a protein that helps orchestrate the body's immune response but can also cause debilitating inflammation. TNF levels rise in patients with Alzheimer's and other neurological diseases.
Tobinick's treatment consisted of weekly injections at $800 each. The results were good, but there were no guarantees, Chiate recalls the doctor saying.
The two men kept talking while Jeannette sat quietly.
As they were leaving, she asked her husband: "Why are we doing this?"
Jeannette lay face down while Tobinick emptied a syringe into the back of her neck and tilted the table to lower her head. He kept her that way for a couple of minutes — to allow the drug to flow into her brain, Chiate says the doctor explained.
Every Wednesday, week after week, it was the same routine.
When Enbrel came on the market in 1998, Tobinick, an internist and dermatologist, was running a laser hair-removal clinic in an office he rented at UCLA, where he was on the volunteer teaching faculty at the medical school.
The next year, he began patenting the use of Enbrel for an array of conditions including spinal cord injury, carpal tunnel syndrome, brain tumors, nicotine addiction and Parkinson's disease — even though he had no proof that the drug worked for any of them.
He opened the Institute of Neurological Research next to his hair clinic and started running radio advertisements for an Enbrel-based back-pain treatment he called DiskCure.
Such "off-label" prescribing of approved drugs is permitted to allow doctors the flexibility to explore reasonable treatment options. But his claims about the back treatment led to an investigation by the California Medical Board, which placed him on probation for unprofessional conduct and made him take classes in prescribing practices and ethics.
It wasn't long before a more ambitious project began to take shape in his mind: the possibility of helping millions of people with Alzheimer's.
Chiate knew that Tobinick's treatments were unorthodox. But that was the point.
"If you've got no other choice, you do what you can do," he says.
Tobinick, Chiate says, always had something to show him: a new scientific article, a video of a patient who appeared to be getting better.
Chiate was encouraged. Months earlier, he'd had no hope for his wife. Now he felt that he was gaining some control over her deterioration. Her attitude was better, she didn't repeat the same questions as often, and her attention span seemed longer, at least to him.
Friends and relatives say Jeannette never spoke about how the treatments made her feel. In fact, she avoided talking about her condition at all.
Years of tending to Jeannette took a toll on Chiate. His two children intervened and took him to a therapist. When she asked him how he was, he began to describe all he was doing to help Jeannette and how she was faring.
"No, how are you doing?" the therapist asked.
He broke down in tears — the first time his children had ever seen him cry.
But the weekly injections gave him a new sense of purpose. It wasn't long before a more ambitious project began to take shape in his mind: the possibility of helping millions of people with Alzheimer's.
"Look, I think I can help you," Chiate recalls telling Tobinick. "If this really works, my firm represents a lot of pharmaceutical companies."
In March 2007, he wrote a testimonial that Tobinick's lawyer sent to Amgen as part of a campaign to persuade the company to take the doctor's approach seriously and sponsor clinical trials of Enbrel as an Alzheimer's treatment. Chiate also wrote directly to the company's chief executive, telling of some of the patients he had met in Tobinick's waiting room and the gains their families described.
"No one has ever accused me of being naive, and as a trial lawyer for 40 years, I believe I am reasonably perceptive and can detect when somebody is trying to mislead me," he wrote.
An Amgen official responded to Tobinick's lawyer that the company did not believe Enbrel offered any hope for Alzheimer's.
Chiate talked to researchers in hopes of finding support. But he says he discovered only skepticism. The role of TNF in Alzheimer's is poorly understood. Experts doubted the treatment could take effect as quickly as Tobinick claimed and suggested that any improvements were a placebo effect or the ordinary waxing and waning of a highly variable disease.
"Everybody was telling me it didn't work," Chiate says. "I thought, 'I'm going to prove them wrong.'"
Everybody who knew Jeannette seems to have a different opinion about whether the injections were making a difference.
"A light would go on" after each shot, says Lisette Larkins, her caretaker.
"I didn't see the benefit," says Jeannette's son, Greg.
"She was calmer after the shot," says her older sister, Judy Clarke.
The only proven effect is separating patients from their money"
— Dr. Jeffrey Saver
Her younger sister, Leslie Graybill, says it was not Jeannette but her husband who seemed to benefit from the injections. "Ken just wanted it to work so badly," she says. "It made him feel he was doing everything he possibly could."
His faith in the treatment remained strong for more than a year.
Then Jeannette's unraveling accelerated and doubts began to set in.
In early 2009 — two years after beginning the weekly shot regimen — Chiate took away her car keys. Over the next year, she grew more disoriented and prone to tantrums.
Chiate thought about stopping the injections. But then he worried her deterioration might have been faster without them.
In 2010, he took Jeannette to Hawaii for their 45th anniversary. She sent a postcard to her sister Clarke that read: "Hit to get a great time and could wood now. Hh a hoppy and a love for me. We lets so hoppy."
That fall, she lost her ability to talk or swallow, and doctors installed a feeding tube. Chiate continued to take her golfing, stopping occasionally to inject a liquid meal into her stomach.
He couldn't shake the idea that Enbrel was effective — if not for his wife, then at least for other Alzheimer's patients. He and Jeannette had suffered so much. Something meaningful had to come from it.
One of his efforts to bring scientific scrutiny to the treatment seemed promising: The head of nuclear medicine at Cedars-Sinai Medical Center, Dr. Alan Waxman, said he was willing to collaborate with Tobinick on a small study using sophisticated scans to examine brain activity in several Alzheimer's patients before and after injections of Enbrel.
Chiate pinned his hopes on the study, and the thought of it buoyed him for months, even as Jeannette was getting worse.
Her legs were shutting down, and she started resisting the treatments from her wheelchair. In the elevator up to Tobinick's office, she would brace her feet against the wall.
A neurologist told Chiate to prepare for the end. In January 2011, after 165 injections of Enbrel over four years, Chiate stopped the treatments.
The next four months were the most tranquil that his wife had experienced in years. She passed the time at home with coloring books and crayons as death neared.
"She seemed to reach a place where she accepted it," Chiate says.
In an interview, Tobinick said Jeannette "had an unusual degenerative disease" that ultimately could not be stopped with Enbrel.
Still, he said, he was confident the drug had worked: "I wouldn't have continued to use the treatment if I didn't think it was helping her."
Jeannette died at home on May 5, 2011. She was 68.
After a small memorial service next to the house, a friend with a helicopter picked up Chiate and hovered over the golf green while he released some of her ashes.
Chiate clung to the thing that had often kept him going while his wife was still alive. He couldn't give up on Enbrel.
He felt he might finally start to get answers once the Cedars study got underway. It would cost $60,000, and he was more than willing to pay.
Tobinick, however, decided not to participate. The design of the study "was not scientifically adequate," he said in an interview.
Tobinick, who wanted to conduct the test in stroke patients instead, said that Chiate never understood his reasons: "He's not a scientist," he said. "He's an attorney."
Chiate was devastated. For four years, he had stood by the doctor. Now, he flinched whenever he heard Tobinick's latest radio ads. "This new breakthrough treatment has helped people long after their stroke, even years after," one says.
Experts said there is little scientific support for the stroke treatment beyond Tobinick's own reports on his patients. "The only proven effect is separating patients from their money," said Dr. Jeffrey Saver, head of the UCLA stroke program.
Tobinick, who now spends most of his time at a clinic he opened in Florida, disputed that characterization.
"It's not iffy whether this works," he said. "Of course it works. Why are the stroke patients coming back for a second dose? Why do the Alzheimer's patients come back for additional doses?"
Chiate worries now that his children may one day face Alzheimer's and that there will be no way to save them.
"He's fixed and solved every problem he's ever faced," Greg Chiate says of his father, "except for this one."
Last fall, Frank LaFerla, an Alzheimer's researcher at UC Irvine, agreed to test Enbrel in mice genetically engineered to have a form of Alzheimer's — if Chiate could raise $125,000 for an experiment.
Chiate went to his friends and business associates and asked them to contribute to the cause. They provided about half the money, and Chiate gave the rest. Tobinick is not involved.
LaFerla says he is skeptical that the treatment will prove beneficial. "The idea is not crazy," he says. But "if it's that good, it would have been embraced by the mainstream medical community."
The first mouse is scheduled to receive an injection of Enbrel early next year.
Chiate, now 71, says he is prepared to move on after the experiment is over: "If it doesn't work, then I'm done and Tobinick was just a bad dream."
Jeannette has been gone for almost two years. Chiate sometimes wonders if other altruistic pursuits would bring him more satisfaction and less heartache.
"I'm a lawyer at the end of my career," he says, his eyes welling up. "Why don't I just go feed the homeless?"
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