There are more Americans with multiple sclerosis than previously thought.
An estimated 947,000 people in the U.S. have multiple sclerosis (MS) — more than double the long-accepted figure of 400,000 — according to a newly completed studyorganized and funded by the National Multiple Sclerosis Society (NMSS).
“This is definitely not what we expected,” Nicholas G. LaRocca, vice president of healthcare delivery and policy research at the New York-based NMSS, said in an interview with Multiple Sclerosis News Today.
The nonprofit organization presented its poster, “The Prevalence of Multiple Sclerosis in the United States: A Population-Based Healthcare Database Approach,” at the 7thJoint ECTRIMS-ACTRIMS Meeting in Paris, the world’s largest MS research gathering.
Now under peer review, these findings are considered tentative until that review is complete and the study is published in a scientific journal, possibly next year.
“In the past, prevalence was looked at as the number of people diagnosed with a given disorder at a particular point in time,” LaRocca said. “But people with a given condition don’t necessarily have the sort of contact with the healthcare system that would appear to generate a valid diagnostic report. In order to get an accurate estimate, you can’t look at one point in time or even a year or two, but several years. That really opened up the possibility that the numbers would be much greater than we anticipated.”LaRocca, who’s headed the MS Prevalence Initiative since its 2014 launch, said the dramatic jump seen in prevalence has more to do with methodology than an actual rise in the number of MS cases — though he doesn’t discount that possibility.
June Halper, CEO of the Consortium of Multiple Sclerosis Centers in Hackensack, N.J., was not surprised by the new data.
“Here in New Jersey alone, we have tens of thousands of cases,” she said. “MS now seems to be occurring all over the world, in areas you wouldn’t expect it to occur.”
Kathy Costello, a registered nurse and associate vice president for clinical care at NMSS, also welcomed the new estimate.
“Over the years, lots of numbers have been thrown around. I myself, in my own practice, thought it had to be much greater than 400,000,” Costello said in a video interview at ECTRIMS 2017. “But we’ve been using that number for 25 years because it’s very difficult to get that those kinds of statistics. This has a whole lot of meaning, for treatments, for health economics and for everyone to know what the number really is.”
The latest NMSS study cost $1 million and involved a working group of 15 to 20 epidemiologists, statisticians and neurologists meeting virtually every week.
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