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September 21, 2022
Today, U.S. Senators Chris Van Hollen (D-MD), Chris Murphy (D-Conn.) and Bill Cassidy, MD, (R-La.) introduced legislation to reauthorize the Centers for Disease Control and Prevention (CDC). The Neurological Conditions Surveillance System (NNCSS) program collects confidential data on neurological conditions to inform research and help develop better treatments and cures.
Specifically, the bill reauthorizes the NNCSS for five additional years and increases funding to $10 million beginning in FY23 and up to $20 million in FY26. The reauthorization will allow the program to complete its current work on Multiple Sclerosis and Parkinson’s and expand to other neurological conditions.
“Good information holds the key to advancing new treatments and cures for Americans living with neurological diseases like Parkinson’s and MS. This is why it is critical to fully support the NNCSS program for an additional five years to expand data collection and research capabilities. As we seek to strengthen our responses and treatments for neurological conditions, this legislation will help the millions of patients — and families — affected by these conditions each year. Senator Van Hollen said.
“NCSS is a critical program that helps us better understand neurological conditions like multiple sclerosis and Parkinson’s disease, which each affect more than one million Americans and their families. Their research is key to developing more effective treatments and ultimately finding a cure for these terrible diseases. We must continue to support their life-saving work.” Senator Murphy said.
“Hope for healing comes through the advancement of knowledge. Let’s create these hopes. Senator Cassidy said.. This bill supports medical and therapeutic research while protecting patient privacy.
“Treating and preventing Parkinson’s means giving researchers the strongest information about how the disease develops and the triggers here in the United States. The National Neurological Conditions Surveillance System is a critical global engine for curing Parkinson’s and other neurological conditions. Ted Thompson JD, Senior Vice President, Michael J. Fox Foundation, Parkinson’s Research. “On behalf of the Parkinson’s community, we are calling on Congress to authorize NCCS so that the world’s best and brightest have access to the data and information they need to cure and one day prevent Parkinson’s disease. Parkinson’s disease costs the United States more than $52 billion annually, and that will increase over the next 15 years will grow to at least $80 billion.Investing $10 million in NNCSS by 2023 to offset billions of dollars in care costs is a smart investment that I hope Congress will support.
“Brain health is critical to individual health. A key way for policymakers to improve mental health is by gathering more information about the incidence and prevalence of neurological disease.” said Orly Avitzur, MD, MBA, FN, president of the American Academy of Neurology.. “The National Neurological Conditions Surveillance System is beginning to provide important insights into Parkinson’s disease and multiple sclerosis. This law ensures the continuation of this important project and has the resources to expand it to more neurological conditions from time to time. Neurological diseases cost America more than $600 billion each year – we need investments like the NNCSS to provide researchers with important data to help improve brain health.
“With a new study identifying the annual economic burden of multiple sclerosis (MS) at $85.4 billion, it is more important than ever to provide researchers with accurate and up-to-date information to answer questions and find a cure for MS.” said Barry Talente, vice president of advocacy and health care access at the National MS Society. “The National Neurological Conditions Surveillance System is positioned to provide critical information to researchers working to eradicate MS and other neurological diseases. MS activists urged Congress to reauthorize and provide $10 million in federal funding for FY23 to support NNCSS.
This law is supported by the American Academy of Neurology, the National Multiple Sclerosis Society, and the Michael J. Fox Foundation approved.
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