- A study by leading experts estimates that in 2017, nearly 1 million adults (up to 913,925) were living with MS in the United States. This is more than twice the previously reported number from a national study in 1975 and subsequent updates.
- The study was launched and supported by the National MS Society with the goal of determining the best way to develop a scientifically sound and economically feasible estimate of the number of people in the U.S. who have MS.
- Having an updated prevalence estimate will allow a better understanding of the needs of people with MS and the economic burdens imposed by the disease on families and society. It will be a starting point for researchers to understand if MS is increasing, or if there are MS geographic clusters that may hold clues to new risk factors that trigger MS. These data will also help ensure that the National MS Society is able to connect to and support all people affected by MS.
- The team published its findings in three papers early online on February 15, 2019 in the journal Neurology (follow links below).
- The first paper in the series was led by Dr. Lorene Nelson of Stanford University School of Medicine and provides the background for assessing the prevalence of MS in the US.
- The second paper, led Dr. William J. Culpepper of the Department of Veterans Affairs MS Center of Excellence and University of Maryland, Baltimore, reviews the methods used to validate the team’s case-finding algorithm.
- The third paper, led by Dr. Mitchell T Wallin of the Department of Veterans Affairs MS Center of Excellence and Georgetown University, presents estimates of the national prevalence of MS.
“This study tells us many things, but one thing in particular — twice as many people need a cure,” said Cyndi Zagieboylo, President and CEO of the National Multiple Sclerosis Society. “We must do more. We need to raise more money to fund more research; we need to fund the programs and services that help people with MS live their best lives; and we need to make sure the voices of people living with MS are heard and their rights to have quality, affordable health care are protected.” 
DETAILSBackground: In the United States, there has not been a scientifically sound, national study of prevalence since 1975. Additionally, MS incidence (the number of people newly diagnosed with MS within a given period of time) and prevalence (the number of people living with a diagnosis of MS within a given period of time) are not consistently reported or tracked in the U.S., and there is no government requirement to do so. The National MS Society has been advocating for a national neurological disease surveillance system that would provide deeper information about the prevalence and impacts of MS and other disorders. In 2016, Congress finally passed the 21st Century Cures Act, which authorized the creation of the National Neurological Conditions Surveillance System. In 2018, funding was provided for its implementation by the Centers for Disease Control and Prevention (CDC).