September 21, 2022
Today, U.S. Senators Chris Van Hollen (D-Md.), Chris Murphy (D-Conn.), and Bill Cassidy, M.D., (R-La.) introduced legislation to reauthorize the Centers for Disease Control and Prevention’s (CDC) National Neurological Conditions Surveillance System (NNCSS) program, which collects data which collects privacy-protected data on neurological conditions to inform research and help advance better treatments and cures.
Specifically, the legislation would reauthorize the NNCSS for another five years and increase funding to $10 million starting in FY23 and up to $20 million by FY26. Reauthorization would allow the program to complete its current work on Multiple Sclerosis and Parkinson’s and expand to other neurological conditions.
“For Americans living with neurological conditions, like Parkinson’s and MS, good data holds the key to advancing innovative treatments and cures. That’s why it’s crucial that we fully fund the NNCSS program for another five years to expand data collection and research capabilities. This legislation will help millions of patients – and families – who are impacted by these conditions each year, as we seek to strengthen our responses to and treatments available for neurological conditions,” said Senator Van Hollen.
“The NNCSS is a critical program that helps us better understand neurological conditions like Multiple Sclerosis and Parkinson’s Disease, which each impact more than a million Americans and their families. Their research is key to developing more effective treatments and ultimately finding a cure for these horrific diseases. We must continue to support their lifesaving work,” said Senator Murphy.
“Hope for cures comes through advances in knowledge. Let’s create that hope,” said Senator Cassidy. “This bill supports research into treatments and cures while protecting patients’ privacy.”
“Curing and preventing Parkinson’s means providing researchers with the most robust information about how the disease originates and what potential triggers exist here in the United States. The National Neurological Conditions Surveillance System is a world-class engine that is integral to curing Parkinson’s and other neurological conditions,” said Ted Thompson, JD, senior vice president of The Michael J. Fox Foundation for Parkinson’s Research. “On behalf of the Parkinson’s community, we call on Congress to reauthorize the NNCSS so that the world’s best and brightest can have access to the data and information they need to cure and, one day, prevent Parkinson’s. Parkinson’s costs the United States more than $52 billion every year, and that will grow to at least $80 billion in the next 15 years. Investing $10 million in FY 2023 in the NNCSS to be able to eventually offset billions of dollars in the cost for care is a smart investment I hope Congress will support.”
“Brain health is crucial to individual health. A key way policymakers can improve brain health is through gathering more data about the incidence and prevalence of neurologic disease,” said Orly Avitzur, MD, MBA, FAAN, President of the American Academy of Neurology. “The National Neurological Conditions Surveillance System has begun to provide critical insights into Parkinson’s disease and multiple sclerosis. This legislation will ensure this important project continues and has the resources to expand to more neurologic conditions over time. Neurologic diseases cost the United States more than $600 billion each year – we need investments like the NNCSS to provide essential data to researchers 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 data to lead to answers and a cure for MS,” said Bari Talente, executive vice president of advocacy and healthcare access at the National MS Society. “The National Neurological Conditions Surveillance System is positioned to provide crucial information to researchers working to end MS and other neurological diseases. MS activists urge Congress to support the reauthorization and $10 million in federal funding for FY23 of the NNCSS.”
This legislation is endorsed by the American Academy of Neurology, the National Multiple Sclerosis Society, and the Michael J. Fox Foundation.
Text of the bill is available here.