11.04.19

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

New Report Reveals That CNY Has Nation’s Highest Rate Of Multiple Sclerosis, Roughly Twice The National Average—A Puzzling & Concerning Phenomenon 

To Address Sky-High MS Incidence, Schumer Calls On CDC To Collaborate With Local Experts At SUNY Upstate To Collect & Analyze Data And Educate CNY Public On Disease

Schumer To CDC: SUNY Upstate Can Help Nation Battle MS  

Standing at the State University of New York Upstate Medical University (SUNY Upstate), flanked by advocates and medical experts, U.S. Senator Charles E. Schumer today shed light on a new study from Blue Cross Blue Shield that found a high incidence of multiple sclerosis (MS) in Central New York, and called on the Centers for Disease Control and Prevention (CDC) to work with locals, including at SUNY Upstate, to get to the bottom of it. MS is a disease with no known cause or cure that attacks the central nervous system, damaging or destroying nerve fibers in the process.

Further, the report calculated that the diagnosis rate of MS in the Syracuse area is roughly double the national average. To better comprehend and address this puzzling and concerning data, Schumer first urged the CDC to collaborate with state and local public health officials to better understand the high incidence of MS and educate the public on the disease. Second, he urged the CDC to work with SUNY Upstate as the agency begins to develop and implement the National Neurological Conditions Surveillance System (NNCSS), a database that will help increase understanding of neurological disorders such as MS.  

“MS is one of the most unpredictable, chronic diseases, and to learn that Syracuse has a sky-high incidence of this often disabling neurological disease is puzzling and concerning—and cries out for prompt and professional research to find out why,” said Senator Schumer. “That’s why I’m calling for all hands on deck, and for the CDC to collaborate with state and local public health officials and the world-class neurological experts at SUNY Upstate to educate the public on MS and to develop and advance the National Neurological Conditions Surveillance System, which will be a critical tool to track and better understand neurological conditions. The CDC has to do everything possible to get to the bottom of the puzzling and concerning phenomenon that is Syracuse’s high MS incidence, and SUNY Upstate can help.”

Schumer first pointed to a recent study from Blue Cross Blue Shield as evidence that a coordinated response is desperately needed for the disease that has no known cause. According to this report, the diagnosis rate of MS in the Central New York-Syracuse Region is roughly 45 per 10,000 commercially insured people. Schumer explained that this incidence is nearly double the national average, which is 24 per 10,000 people, and a third higher than the New York State average, which is 31 per 10,000 people. Furthermore, of all the metropolitan areas included in the study, Syracuse had the highest incidence reported.

Schumer argued that while the total number of New Yorkers living with MS is unknown, the findings revealed by the study support the need for federal cooperation with New York State on addressing MS. Therefore, Schumer called on the CDC to work with public health officials to help better understand the high incidence of MS in the Syracuse region, as well as apply its technical expertise to educate both local health care professionals and the public at large on MS. 

Additionally, Schumer encouraged the CDC to collaborate with the world-class neurological and medical experts at SUNY Upstate as the agency collects and evaluates data for the NNCSS. In 2016, the 21st Century Cures Act, which Schumer was a staunch supporter of and fought tooth and nail to pass, authorized the NNCSS. This database is designed to better the scientific community’s understanding of neurological conditions such as MS. The NNCSS received $5 million in funding in Fiscal Year 2019, and the CDC is in the early stages of implementation. Currently, the agency is evaluating existing data sources in order to determine how to construct a complete and sufficient database. The CDC is also working alongside stakeholders and Congress on the progress of NNCSS and relevant, early results. At first, the NNCSS will focus on MS and Parkinson’s disease, with plans to expand the database to other neurological conditions in the future. 

Schumer said that as CDC works to implement the NNCSS, the agency should engage with the first-rate neurological research team at SUNY Upstate, given their local expertise and ongoing, multidisciplinary diagnosis research, translational treatment research, and clinical trials involving MS. Using cutting-edge research and technology, the SUNY Upstate neurological research team seeks to further comprehension of neurological disorders, such as MS, and aims to develop and advance potential treatments for them. The team operates in scientific laboratories as well as a clinical research unit. Furthermore, SUNY Upstate is home to an Infusion Center that specializes in the treatment of MS. Schumer said that considering its impressive infrastructure and MS-related experience, SUNY Upstate would be the perfect partner for CDC as it implements the NNCSS and, more broadly, works to comprehend the high incidence of MS in Central New York. 

In summary, Schumer argued that a coordinated effort between the CDC, SUNY Upstate, and other local researchers and public health officials is a crucial and necessary first step in understanding the high incidence of MS in Central New York. Meanwhile, Schumer vowed to continue fighting tirelessly for increased research funding to ensure that the CDC and other federal health agencies have all the tools and resources they need to study and address complex diseases like MS.

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. At the moment, there is no known cause of or cure for MS, and treatment options are only effective in managing its symptoms and slowing its progression. The National MS Society estimates that nearly 1 million people over the age of 18 live with MS in the United States.

A copy of Schumer’s letter appears below. 

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.

Sincerely,

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