In 2014 the Society launched the MS Prevalence Initiative 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. This initiative convened the world’s experts in MS prevalence a who determined that the best approach is to develop a method of sampling administrative databases (such as those maintained by insurers, health maintenance organizations, Medicare, Medicaid, Veterans Health Administration, and the U.S. military). This effort, which is well underway, will not only determine how many people in the U.S. have MS, but will also provide critical information about other social and economic characteristics of the disease, which will inform research, programs and advocacy that will help people with MS live their best lives. We expect to be able to announce the initial results of this work later this year.
In addition to this effort, the Society has been advocating for the establishment of a national data collection system that will track the number of people living with MS in the United States. This legislation would create a centralized data collection system at the Centers for Disease Control and Prevention (CDC) to track and collect data on the epidemiology of neurological diseases, including MS. Information collected will provide a foundation for evaluating and understanding many factors, such as geographic clusters of MS; variability in racial and ethnic risk; changes in the gender ratio; disease burden; and health care practices and utilization.
The Advancing Research for Neurological Diseases Act of 2015 (H.R. 292/S. 849) was included in the 21st
Century Cures Act which passed the House of Representatives on July 10, 2015. On February 9th
, the Senate Health, Education, Labor and Pensions (HELP) Committee will consider the Advancing Research for Neurological Diseases Act as part of its approach to moving biomedical innovation bills. This is the first step towards Senate passage. If the legislation passes in the Senate, there will be a conference committee between the House and the Senate to agree on the same legislative language of the bill.
In the meantime, the Society will continue to report the worldwide prevalence of MS as an estimated 2.3 million individuals, a figure established by international MS organizations. People who agree with the urgent need for filling this knowledge gap can join the Society in advocating for the establishment of a national data collection system that would track MS prevalence in the US. Please join the Society’s activist network