New Jersey Legislature Advances Key ALS Legislation

On Thursday, December 18th, the New Jersey State Senate advanced legislation to make ALS a reportable disease. The bill was championed by Senators Gopal and Singleton and passed unanimously with a vote of 38-0. The legislation now heads to Governor Murphy for his signature.

S4030 will require health care professionals to confidentially report new cases of ALS in New Jersey within 6 months of diagnosis. This reporting will help to track where there are increases in ALS cases while making important progress in ALS research. Patient information will remain confidential.

“This legislation to make ALS a reportable disease in New Jersey is a significant victory for the ALS community,” said Tony Heyl with ALS United Mid-Atlantic. “Thank you to the advocates who pushed to get this done and to the legislators who showed their support with such a strong bi-partisan vote. Together, we will end ALS.”

Gopal and Singleton Bill to Strengthen ALS Reporting and Support Research Passes Senate

The bill, S4030, would require health care professionals who screen for, diagnose, or provide therapeutic services to patients with ALS or motor neuron disease to confidentially report cases within six months of diagnosis, consistent with state and federal privacy protections. The data would be used exclusively for public health monitoring, research, and statistical purposes, while ensuring the confidentiality of patients and providers.

“ALS is a devastating disease that impacts families across New Jersey, yet we still lack complete and reliable data on how many people are affected and where support is most needed,” said Senator Gopal (D-Monmouth). “By improving reporting and data collection, this legislation helps ensure that public health officials and researchers have the information necessary to understand ALS better and improve care, resources, and outcomes for patients.”

“Accurate data is essential to advancing research and delivering meaningful support to individuals living with ALS and other motor neuron diseases,” said Senator Singleton (D-Burlington). “This bill modernizes our approach while maintaining strict privacy protections, allowing New Jersey to contribute valuable information to broader research efforts and public health planning.”

Under the bill, the Department of Health would oversee reporting to the New Jersey State Health Assessment Data System. The Department of Health would be permitted to share de-identified data with the Centers for Disease Control and Prevention, local health officials, or qualified researchers for public health and research purposes. Any shared data would be limited to the minimum necessary to support approved research, with no personal identifying information included. The de-identified datasets would also be available on the DOH website within one year of the bill’s enactment.

John Russo and his wife, Loretta Russo, share a firsthand account about living with ALS. Watch here: