Letter to the Hon. Robert Redfield, Dir. of the Centers for Disease Control and Prevention - Schumer: New report shows CNY has the highest rate of multiple sclerosis in the nation; senator calls for CDC to collaborate with local experts to get to the bottom of sky-high multiple sclerosis incidence in CNY ASAP

Letter

Dear Director Redfield:

I write today to respectfully request the Centers for Disease Control and Prevention (CDC) assist New York in understanding and addressing the high incidence of multiple sclerosis in certain areas of the state. As the nation's leading public health agency, the CDC has the expertise, capacity, and resources necessary to support local and state public health officials in investigating the high rate of this disease in Central New York.

Multiple sclerosis (MS) is a disease in which the body's immune system attacks the central nervous system, damaging or destroying nerve fibers in the process. The body is then unable to send signals between the brain, spinal cord, and optic nerves, resulting in a variety of neurological symptoms. Unfortunately, there is no cure for the disease, and the treatments available are only effective in managing symptoms and slowing the progression. Given the chronic and unpredictable nature of MS, I am extremely concerned by the unusually high occurrence of the disease within the Syracuse metropolitan area of my home state.

A recent analysis by the Blue Cross Blue Shield Association found that the diagnosis rate of MS in the Syracuse region was roughly 45 per 10,000 commercially insured individuals. This incidence is nearly double the national average (24 per 10,000 people) and a third higher than the New York state average (31 per 10,000 people). Of all of the metropolitan statistical areas included in the study, Syracuse represented the highest incidence.

While the total number of New Yorkers living with MS is unknown, the findings revealed by this study support the need for federal coordination with New York on addressing MS. I urge the CDC to work with New York state and local public health officials to help better understand the high incidence of MS in the Syracuse region, as well as assist in educating local health care professionals and the public on MS.

Additionally, I encourage the CDC to collaborate with the State University of New York Upstate Medical University (SUNY Upstate) as the agency collects and evaluates data for the National Neurological Conditions Surveillance System (NNCSS). As you know, the 21st Century Cures Act, legislation that I strongly supported, authorized CDC to develop the NNCSS. With the agency just beginning to initiate implementation of the NNCSS this year, the CDC should engage with the neurological research team at SUNY Upstate given their local expertise and ongoing, multidisciplinary diagnosis research, translational treatment research, and clinical trials involving MS.

I strongly believe a coordinated effort between the CDC and New York researchers and public health officials is a crucial first step in understanding the high incidence of MS in Central New York. Meanwhile, I will continue to fight for increased research funding to ensure that the CDC and other federal health agencies have all of the tools required to study and address complex diseases like MS.

Thank you for your consideration of this important request. Please let me know if I can be of assistance.

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