Study to enhance MS knowledge

One of the most perplexing questions about multiple sclerosis in Eastern Washington – exactly how common is it here? – could be answered by new research expected early next year.

MS patients and experts specializing in the disease are anticipating results of a multi-year study by a team at the Oregon Health and Science University in Portland. Led by associate professor William Lambert, the study is expected to provide the first accounting in decades of actual cases of MS near the Hanford Nuclear Reservation and in several Eastern Washington counties, including Spokane County.

“Getting more accurate numbers for our region, I think, is going to be very worthwhile,” said Dr. Roy Kanter, medical director of the Holy Family MS center in Spokane, who has worked with Lambert. “Part of the importance of knowing the prevalence in our area is that it may help give us clues to causation.”

For MS patients like Valerie Vissia, 51, of Davenport, there is no more crucial question to consider.

“If they can get a better handle on the ‘why,’ more power to them,” said Vissia, who was diagnosed in 1999. “What triggers it? That’s the big mystery.”

Understanding the prevalence of MS here and elsewhere has been difficult. Most estimates rely on self-reporting to MS agencies and analysis of existing health databases. Increasingly, however, privacy restrictions and heavy workloads among doctors have decreased the availability and accuracy of diagnosis data.

Still, rumors have swirled for years that Eastern Washington has the second-highest rate of MS in the world, behind certain sites in Scotland.

Existing estimates do indicate a spike here, with about 220 reported cases of the disease per 100,000 people, said Robert Hansen, president of the Inland Northwest Chapter of the National Multiple Sclerosis Society. In the U.S., the overall rate is about 135 cases per 100,000, far below sites in Scotland where it rises to 300 cases per 100,000 population, according to Nicholas LaRocca, a health and research expert for the National MS Society.

But there are other places in the U.S. that report very high rates as well, LaRocca said.

“People from different parts of the country will say, ‘We have the highest prevalence of MS,’ ” he said. “It’s almost like a matter of pride.”

Lambert’s three-year study received an undisclosed amount of funding in 2002 from the Agency for Toxic Substances and Disease Registry, a program of the federal Centers for Disease Control and Prevention. It was among nine studies approved in 2000 and later to study the prevalence of MS, and, in some cases, amyotrophic lateral sclerosis, or ALS.

Early descriptions indicated he planned to combine traditional electronic database sources with on-the-ground interviews with MS patients near the Hanford Nuclear Reservation and in Eastern Washington counties.

Lambert didn’t respond to e-mails and telephone calls inquiring about the study. He did discuss the research briefly in a Washington State University newspaper recently, but WSU spokeswoman Becky Phillips said he was hesitant to release too much information before publication of his study.

Researchers often are limited in what they can say, noted Jonathan Mordie, a spokesman for OHSU.

Dr. Dennis Bourdette, chairman of the OHSU department of neurology, worked with Lambert in the early phases of the project. Although he hasn’t been involved in the actual research and hasn’t seen the results, Bourdette said the study could offer insight into the question of MS prevalence.

“It’s important work,” he said. “At least in the research plan I had reviewed, it seemed like he was going at it in an appropriate way.”

Understanding prevalence could help illuminate known factors that contribute – or don’t contribute – to MS, said Dr. George Kraft, who heads the MS research and training center at the University of Washington in Seattle.

MS doesn’t appear to be related to contamination at the Hanford site, said Kraft, who conducted a study of the link several years ago. In fact, environmental concerns appear to be far less of a factor than family ties and ethnic heritage.

“We really think the genetics are a big part of this,” said Kraft, who generally figures that the rate of the disease in Washington hovers at 240 cases per 100,000 people.

Until a study confirms the actual rate, however, no one knows. Ideally, a national surveillance tool will be developed soon, said LaRocca, of the National MS Society. But smaller studies like Lambert’s are useful in the meantime.

“It’s important to understand the scope of the problem,” LaRocca said. “Are we talking about 400,000 people or 600,000 people?”

For MS patients, it’s important to know how common their condition is, said Vissia. Her disease has been dramatically checked by regular injections of Rebif, a beta interferon drug used to slow the progress of MS.

For Vissia, understanding prevalence offers a glimpse of how many others might understand the vision problems, muscle weakness and heat intolerance that can interfere with her daily life. It could also lead to increased funding for research, which could lead to better treatments, and, perhaps, a cure.

“The younger people I meet, they have a good handle on it,” she said. “They have a lot more hope.”