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Multiple sclerosis study turns to insurance companies

Associated Press

BOISE – The state is asking insurance companies for help after a review of public records failed to show whether Idaho has higher rates of multiple sclerosis than other Western states, state epidemiologist Dr. Christine Hahn says.

The research is part of a study designed to help determine if wind-carried radioactive dust and debris from nuclear testing done in Nevada decades ago contributed to multiple sclerosis in some Idaho residents. Hahn has already reviewed death certificates and Medicaid claims, but neither effort produced strong results, she said.

“There are two kinds of diseases that we do a real good job of tracking – infectious reportable diseases and cancer,” Hahn said Wednesday. “That’s because by law both of those are reportable to the health department, and we can tell you the number of cases by ZIP code, by city, by region.”

But there is no such tracking system for multiple sclerosis and a number of other diseases, she said, leaving researchers to rely on voluntary information that may or may not be accurate.

Some scientists believe that nuclear radiation may contribute to multiple sclerosis, a chronic autoimmune disease. If Hahn finds that Idaho has higher rates of the disease than neighboring states, it will open the door for further research to find out if those rates are linked to radioactive fallout from Cold War-era testing in Nevada.

Hahn started by reviewing Idaho death certificates from 1979 to 2003, but that effort didn’t net much information, she said. Idaho’s rate of MS deaths was higher than the national average, but similar to other northern states – a long-recognized phenomenon. And because few people with multiple sclerosis die of the disease, the diagnosis is often left off of state death records.

State Medicaid claims also yielded no clear geographic pattern.

“Medicaid data can be impacted by the number of nursing homes in the community,” Hahn said. “And it’s very flawed from the get-go because Medicaid recipients are only a portion of the population.”

Now Hahn is trying to work with insurance companies Blue Cross and Blue Shield to try to gather their MS-related claim rates.

“There are hurdles in the sense that Blue Cross and Blue Shield are under no obligation to us,” Hahn said. “They’re not resistant, but they’re very busy also and they get a lot of data requests.”

Twin Falls podiatrist Peter Rickards, an outspoken advocate for Idaho downwinders – people who lived downwind from the radiation – said he was disappointed that the state took time to review death certificates before looking at Medicaid and insurance company information.

“Basically death certificates are the least appropriate way to look for MS rates,” Rickards said. “And it’s extremely important that we look at all autoimmune rates, not just MS.”

If the insurance data are not helpful, the state will look westward, at the results of another MS study of the region around Washington’s Hanford Nuclear Reservation. That study – which asks neurologists to voluntarily submit MS diagnosis information – is expected to be released by the end of this year, Hahn said.

Dr. William Lambert, an associate professor at Oregon Health & Sciences University in Portland, is conducting the Hanford study, which was prompted in part by public concern that the region appears to have a high rate of MS.

“At this time, we’re taking the first steps to actually go out and confirm the expected high rates,” Lambert said. “If the cases are high, that would suggest a need for future research to look for a cause.”

Regardless of Hahn’s findings, Rickards and former Twin Falls resident Arthur Vandenbark are hoping to do an MS study of their own, focusing on an apparent cluster of cases in the Shoshone region.

Vandenbark, now a professor of molecular microbiology immunology and neurology at OHSU, said there appears to be growing evidence that exposure to radiation could make people susceptible to autoimmune diseases.

Southern Idaho seems to have a lot of families suffering from strange “constellations” of disease, he said – including his own.

“My sister got MS, and we have no family history. My older brother got cancer, my other older brother got a very rare degenerative brain disease,” he said. “But one of the hardest things about looking at epidemiology is that people move away, and new people move into an area. It can be very tough to track these clusters.”

Vandenbark and Rickards hope to track down former and current Shoshone residents who have been diagnosed with MS. Then, Vandenbark said, they will try to collect the information that prompted the MS diagnoses and have it reviewed by an independent doctor. The results should either support or debunk the idea of a local MS cluster, he said.

Some components of nuclear fallout have already been linked to several types of cancer. Currently, the federal Radiation Exposure Compensation Act, which pays $50,000 to residents with exposure-related health problems in some parts of Nevada, Utah and Arizona, excludes Idaho residents.

Last month, Idaho Sens. Mike Crapo and Larry Craig introduced legislation that would include all of Idaho under that compensation program if residents can show they have diseases linked to the Nevada testing.

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