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Spokane, Washington  Est. May 19, 1883

System slights MS treatment

No drug involved, so clinical trials unlikely

Amie Rosenberger, who has multiple sclerosis,  talks with Dr. Bhupendra Khatri during plasma exchange treatment at Aurora St. Luke’s Medical Center in Milwaukee on June 22. McClatchy Tribune (McClatchy Tribune / The Spokesman-Review)
John Fauber Milwaukee Journal Sentinel

MILWAUKEE – Thirty years ago, Bhupendra Khatri was an impressionable neurology resident in Milwaukee who had just seen a presentation about a strange treatment for multiple sclerosis.

Khatri was so struck by the therapy – a blood-filtering process known as plasma exchange – that he traveled to California to learn more about it.

Once there, he found a used blood exchange machine that he purchased for $2,500. He rented a trailer, hitched it to his Plymouth Scamp and drove back to Milwaukee in search of his first patient.

Over the next three decades he would treat nearly 500 people.

Through it all Khatri has endured the ridicule of other doctors, fought with insurance companies and tried to convince the medical community that the therapy really is helping MS patients. It’s a quest that may never be resolved.

“They said it was rubbish and voodoo medicine,” Khatri said.

His story is one that cuts through the heart of the debate about the cost and effectiveness of health care as well as the influence of drug companies in medicine, or, in Khatri’s case, the lack of pharmaceutical interest.

The treatment he has championed is not cheap, not FDA approved and not likely to get widespread use because it doesn’t offer big returns for the pharmaceutical industry.

Others in the field acknowledge there is growing evidence that plasma exchange offers benefit as a short-term therapy in treating acute MS episodes.

But without financial backing, the large-scale, rigorous clinical trial that might prove the therapy’s effectiveness for long-term maintenance may never get done.

Until then, doctors in the field will continue to raise their eyebrows when they hear about Khatri’s approach, questioning the science supporting it and whether it really is effective.

Indeed, Khatri probably is the only one in the field who is using plasma exchange as long-term maintenance therapy, said Bibiana Bielekova, an MS researcher with the National Institutes of Health.

“It’s clearly not something that is widely accepted in the field,” she said.

Unless you’re one of the many patients Khatri treats at Aurora St. Luke’s Medical Center in Milwaukee.

The treatments involve removing blood through a catheter in the arm and separating out the plasma. The red blood cells then are mixed with artificial plasma, which is returned to the body through a needle in the other arm.

Each session takes about two hours. The treatments cost $4,000 to $5,000 per session.

The prevailing theory is that the process removes antibodies and other substances in the blood that leak into the brain and damage the myelin coating on nerve cells.

After developing blurred vision and difficulty walking, Katherine Roback was diagnosed with MS in 1981. When her symptoms worsened, she contacted Khatri, who then was at Froedtert Hospital.

Since 1983, she has been getting plasma exchange treatments from him every month or two.

She has gone from being in a wheelchair to using a cane or walker, she said. More importantly, she said, the treatments have slowed her deterioration.

“It’s helped me tremendously,” said Roback, 58. “I wouldn’t be walking without it.”

Melinda Winter was diagnosed with MS in 1990. She underwent plasma exchange for six months, but went off it for about two years while she was in remission.

Then she woke up in the middle of the night with vertigo. She could barely move or talk.

She was taken to the emergency room and admitted to St. Luke’s for six weeks, where she underwent plasma exchange once or twice a week.

Since then, Winter, 38, goes in for treatment every three weeks. Insurance now covers the cost, she said. Winter also takes two other drugs for MS.

But she said she believes it is the plasma exchange that has allowed her to get through college and graduate school.

Without it, she said, “I’d either be dead or in a nursing home.”

In May, Khatri and researchers at Stanford University and the Medical College of Wisconsin presented research at the annual meeting of the American Academy of Neurology on a 25-year study of 271 patients who underwent plasma exchange.

A total of 217 patients showed improvement in their disability.

However, the research as well as the patient stories are not the kind of well-designed, randomized clinical trials that are needed for FDA approval or that might convince doctors of the effectiveness of a treatment.

Plasma exchange as a long-term treatment for MS remains outside the mainstream of medicine because of a lack of evidence, said Lily Jung, an MS expert at the Swedish Neuroscience Institute in Seattle and a spokeswoman for the American Academy of Neurology.

“That doesn’t mean it doesn’t work,” she said. “(But) I have about 1,000 patients and I think I’ve used it once.”

Michael McQuillen, then chairman of neurology at the Medical College, remembers Khatri returning to Milwaukee in 1979 with his used blood exchange machine.

There was a woman with MS who had been admitted to what is now Froedtert Hospital. She could not walk and was not responding to conventional treatment, although, at the time, there were few drugs to treat MS. Khatri asked if he could try plasma exchange.

“I said, ‘That doesn’t make any sense, but go ahead,’ ” said McQuillen, now a clinical professor of neurology at Stanford University.

Within two weeks she was walking.

Over the next year, Khatri started using the therapy on the worst MS cases and most of them got better, McQuillen said.

He said Khatri epitomizes what a doctor should be to his patients. “He stands by them,” he said.