September 21, 2022
Today, US Senators Chris Van Hollen (D-Md.), Chris Murphy (D-Conn.) and Bill Cassidy, MD, (R-La.) introduced legislation to reauthorize the National Centers for Disease Control and Prevention (CDC) . Neurological Conditions Surveillance System (NNCSS) data collection program that collects confidential data about neurological conditions to inform research and help lead to better treatment and cures.
Specifically, the legislation would reauthorize the NNCSS for five more years and increase funding to $10 million beginning in FY23 and to $20 million by FY26. The reauthorization will allow the program to complete its current work in multiple sclerosis and Parkinson’s disease and expand to other neurological conditions.
“For Americans living with neurological diseases such as Parkinson’s and MS, good data is the key to advancing innovative treatments and cures. Therefore, it is critical that we fully fund the NNCSS program for another five years to expand data collection and research capabilities. This legislation will help the millions of patients – and families – who are affected by these conditions each year as we strive to improve our responses and available treatments 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, each of which affects more than one 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 life-saving work,” Senator Murphy said.
“Hope for a cure comes from advances in knowledge. Let’s create that hope,” Senator Cassidy said. “This bill supports research into treatments and cures while protecting patient privacy.”
“Treating and preventing Parkinson’s disease means providing researchers with the most reliable information about how the disease occurs and what potential causes exist here in the United States. The National Neurological Surveillance System is a world-class engine that is integral to the treatment of Parkinson’s disease and other neurological conditions,” said Ted Thompson, JD, senior vice president of the Michael J. Fox for Parkinson’s Research. “On behalf of the Parkinson’s community, we are calling on Congress to reauthorize the NNCSS so that the world’s best and brightest can access the data and information they need to treat and one day prevent Parkinson’s disease. Parkinson’s disease costs the United States more than $52 billion each year, and that will grow to at least $80 billion over the next 15 years. Investing $10 million in FY 2023 in NNCSS so we can eventually 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 policymakers can improve brain health is by collecting more data on the incidence and prevalence of neurological diseases.” said Orly Avitsur, MD, MBA, FAAN, president of the American Academy of Neurology. “The National Neurological Surveillance System has begun to provide critical information about Parkinson’s disease and multiple sclerosis. This legislation will ensure that this important project continues and has the resources to expand to more neurological conditions over time. Neurological 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 Barry Talente, executive vice president of advocacy and health care access at the National MS Society. “The National Neurological Surveillance System is positioned to provide important information to researchers working to end MS and other neurological diseases. MS activists are calling on Congress to support the reauthorization and $10 million in FY23 federal funding for the NNCSS.
This legislation has been endorsed by the American Academy of Neurology, the National Multiple Sclerosis Society, and the Michael J. Fox.
The text of the bill is available here.