More MS news articles for February 2000

Risking an unproven MS therapy

A Gresham man debilitated by multiple sclerosis is chosen for an experimental stem cell transplant

Wednesday, February 23, 2000

By Patrick O'Neill of The Oregonian staff

It started three years ago with a simple slip. One second, Howard Whetstine was walking across the lot of the car dealership where he worked. The next, much to his embarrassment, he was lying flat on his face.

"It felt like my leg just went out from under me," he said.

Whetstine couldn't have known it at the time, but the fall signaled the beginning of a journey that would take him through disability and despair into a cutting-edge but risky medical program. it also would show him the value of persistence in seeking experimental treatments that aren't offered as a matter of course by most doctors and insurance companies.

The 48-year-old Gresham man had been having problems with a weak right knee for a year before his fall. Sometimes his leg ached as though he'd injured it. Whetstine figured maybe he'd hurt himself playing golf or bowling.

As the months went by, it seemed as though he was getting clumsier.

"It's like I'd stumble on cracks in the sidewalk," he said. "I thought it was just kind of stupid."

Whetstine began suspecting there was something wrong with his lower back. He'd known of people who had back problems that caused them to stumble.

His doctor told him to get more exercise, to walk more. As a car salesman, Whetstine walked all day long anyhow. But he followed the doctor's advice for a year. The weakness in his knee got worse. Then, in September 1997, a couple of months after his fall at the dealership, Whetstine was referred to a neurologist.

He recalls being oddly relieved at the diagnosis: multiple sclerosis, a degenerative nerve disease of unknown cause that afflicts 350,000 to 500,000 Americans.

"My big fear was Parkinson's disease," Whetstine, now 51, recalled. "My gran dfather died of Parkinson's, and I watched him waste away. When they told me I had NIS, I kind of felt like, OK, I can handle this. I'd never known anybody who'd had it and couldn't get around."

For Whetstine and others diagnosed with MS, the problem is this: The immune system is in open rebellion against the body. The main components of the immune system are specialized blood cells that hunt down and slaughter the invading hordes of bacteria, viruses, fungi and parasites that enter our bodies every hour of every day.

The immune system is supposed to keep careful track of what is and what isn't part of the body. But somehow, that delicately balanced and usually reliable army of cells begins to attack the body itself. Specifically, the killer cells target the vital insulation that covers the nerve fibers in the brain and spinal cord. That insulation, a fatty substance called myelin, ensures clear, high-speed transmission of nerve impulses between the brain and the far reaches of the body.

Scientists don't know why the immune system goes berserk in MS patients. Most blame it on a combination of genetic and environmental factors.

May progress gradually or quickly

Multiple sclerosis is an unpredictable disease. Most often, it advances slowly over many years. Sometimes, however, it hurtles like a freight train, speedy and unstoppable. Such is Whetstine's case.

Whetstine went from using a cane to needing a wheelchair by August 1998. Still, he was able to go to work, driving a van with hand controls.

In desperation, he scanned through Internet Web sites, trying to find a cure, some way to slow down his body's free fall to disability. Finally, he found an article in a multiple sclerosis newsletter describing a new but dangerous treatment for his disease: stem cell transplantation.

In the previous few years, clinics that offer bone marrow transplants as cancer treatments have noticed a curious phenomenon. Some patients who were treated for cancer also had autoimmune disorders -- MS, lupus or rheumatoid arthritis. And when they underwent bone marrow transplants, those conditions improved. In some cases, the symptoms went away altogether.

Physicians reasoned that the diseases arose in the bone marrow, the birthplace of the blood cells that make up the immune system. When doctors administered high doses of cancer-killing chemicals and radiation, the patient's bone marrow was destroyed. When new marrow was transplanted, the progress of the diseases sometimes was halted. The findings intrigued

He found that the Fred Hutchinson Cancer Research Center in Seattle had been looking into a variation on that treatment, tailored for multiple sclerosis. Doctors could remove "stem cells" from the blood. These are immature cells that can readily diversify into the wide variety of cells needed to rebuild the immune system.

Then, four months ago, Whetstine was felled with a raging case of the flu.

"It completely knocked me down," he said. "I couldn't even roll over in bed. I lost strength in my right hand, so I couldn't operate the (van's) controls."

Soon after, he was tentatively admitted to the Fred Hutchinson stem cell program, if Regence Blue Cross and Blue Shield of Oregon, his insurance carrier, would pay the $100,000 cost. But the company rejected the treatment as too risky.

Insurance companies' policies

Joanna Zamora, a medical policy clinician for Regence Blue Cross and Blue Shield of Oregon, said stem cell transplants for multiple sclerosis are "clearly investigational."

"Anecdotally, it's been shown that some patients with MS get better," she said. "But we think it's just temporary and that everything will come back full-blown."

The insurance company doesn't strictly rule out experimental treatments but considers them on a case-by-case basis.

A year ago, Blue Cross began a policy of paying for clinical trials to treat life-threatening illnesses in which standard therapies don't work, "as long as it's shown that it's effective and safe in preliminary trials," she said.

During the past year, she said, the company has paid for bone marrow transplants for both ovarian cancer and multiple myeloma -- both investigational therapies.

Kaiser Permanente has wrestled with using stem cell transplants for autoimmune disorders. In November, a 10-year-old Kaiser patient who suffered with a crippling case of juvenile rheumatoid arthritis underwent the treatment at Oregon Health Sciences University.

Dr. David Tilford, a pediatric cancer specialist who reviewed Mollie Hauck's case, said that although the child is doing well now, the treatment is so new that there's no way of telling whether or when the disease may come raging back.

Tilford said Kaiser examines each case to determine whether the possible benefits of an unproven treatment outweigh the high risks.

"You have to identify very unusual individual patients who seem to need more than conventional therapy and then have intense discussions about the options," he said.

In Mollie's case, doctors and her parents decided that the disease was causing her such intense pain that the risk of transplantation was worth it.

About a month ago, Whetstine got news from the Fred Hutchinson center. Doctors there heard of a similar program at the University of Nebraska Medical Center in Omaha. That program would pay for Whetstine's treatment.

Dr. Steven Pavletic, associate professor of hematology, oncology and bone marrow transplantation at the University of Nebraska Medical Center, said Whetstine's treatment would take about two months.

100 patients have tried treatment

So far, he said, a total of about 100 patients in Europe and the United States have undergone stem cell transplants for multiple sclerosis.

Initial results are promising, he said.

Four years after the initial trials in Greece, the treatment seems to stabilize the disease in 40 percent of patients. Another 40 percent show a slight improvement, and 20 percent don't respond to the therapy.

Those results come at a high risk. One patient in 20 dies from the results of infection or the effects of chemotherapy and radiation in the first six months after the procedure.

The point of Pavletic's research is to answer two key questions.

"The main question is how does this compare to the conventional therapies, head to head, and how does it compare in durability of response in the long run," he said.

Whetstine is scheduled to begin his treatment March 6. Pavletic says the patient will get medication for five days to spur the growth of stem cells in his bone marrow. Then Whetstine's blood will be pumped through a machine that picks out stem cells. Two weeks later he will undergo total body radiation along with high doses of chemotherapy to kill off his bone marrow and destroy his body's "memory" of how to make the defective blood cells that are attacking his nervous system.

After his marrow is destroyed, Whetstine's own stem cells will be transfused. If all goes according to plan, the cells will find their way into Whetstine's bones and begin rebuilding the marrow.

Although the University of Nebraska Medical Center will pay the costs of his treatment, there will still be a financial drain on Whetstine and his wife, Nola. The couple must pay for out-of-hospital accommodations during the treatment as well as travel expenses and rent on their Gresham apartment.

Whetstine is under no illusions about the life-threatening risks of the procedure.

"I could have an adverse reaction, get a cold or the flu," he said.

Without an immune system, such a simple infection could kill him. Against those chances, Whetstine weighs the possibility of a good outcome. He measures his survival without treatment as "maybe five years at best."

But, for him, the risk is worth it.

"If I don't get the treatment, I'll be in a nursing home in six months to a year," he said.

You can reach Patrick O'Neill at 503-221-8233 or by e-mail at