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S 4030

Relates to emissions of toxic air contaminants

2025 Regular Session Introduced by Nathalia Fernández and 2 co-sponsors

Mandates confidential reporting of ALS and specified motor neuron diseases to NJSHADS within 6 months of diagnosis; protects privacy; enables data sharing with CDC/researchers.

REFERRED TO ENVIRONMENTAL CONSERVATION
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Bill Summary · S 4030

Summary — S 4030 (2025)

Title: Relates to emissions of toxic air contaminants (bill text focuses on reporting of amyotrophic lateral sclerosis and motor neuron disease)

Note: As reported through Senate committee amendments and the Budget & Appropriations Committee, S 4030 requires confidential disease reporting for amyotrophic lateral sclerosis (ALS) and a broader set of motor neuron diseases (MND).

Purpose

To establish a mandatory, confidential reporting system for cases of ALS and motor neuron diseases in New Jersey to support public health surveillance and research while protecting patient and provider privacy.

Key provisions

  • Reporting requirement
    • Health care professionals who screen for, diagnose, or provide therapeutic services to patients with ALS or other motor neuron diseases must confidentially report all known cases to the New Jersey State Health Assessment Data System (NJSHADS).
    • Reports must be submitted no later than six months after a patient is diagnosed.
  • Definition of motor neuron disease
    • The bill defines “motor neuron disease” to include progressive neurological conditions that destroy motor neurons, specifically listing: amyotrophic lateral sclerosis, progressive bulbar palsy, primary lateral sclerosis, progressive muscular atrophy, spinal muscular atrophy, Kennedy’s disease, and post-polio syndrome.
  • Privacy and data protections
    • All information reported to NJSHADS must be handled to protect against disclosure of confidential or personally identifying information, consistent with federal and State privacy laws (e.g., HIPAA).
    • Data in NJSHADS is to be recorded and compiled for research and statistical purposes only.
  • Data sharing
    • The Department of Health may enter agreements to provide NJSHADS data to the federal Centers for Disease Control and Prevention (CDC) and successor agencies, local health officers, or researchers studying ALS/MND for public health and research purposes. Shared data must also be protected against disclosure of identifying information.
  • Public information and implementation
    • No later than 12 months after the bill’s effective date, the Commissioner must make written educational materials available on the Department’s website about NJSHADS, including how to access datasets and statistics related to ALS and MND.
    • The Department, in consultation with the Public Health Council, will adopt implementing regulations under the Administrative Procedure Act.

Who is affected

  • Health care professionals licensed under Title 45 (New Jersey) who diagnose or treat ALS/MND — responsible for reporting.
  • Patients diagnosed with ALS or other specified motor neuron diseases — their cases will be entered into NJSHADS in de-identified form for surveillance and research.
  • New Jersey Department of Health — implements reporting system, promulgates rules, and may share data with CDC, local health officers, and qualified researchers.
  • Researchers and public health agencies — potential users of de-identified data for epidemiologic and research purposes.

Timeline & procedural points

  • Reporting deadline: within 6 months of diagnosis.
  • Educational materials: posted within 12 months of the bill’s effective date.
  • Rulemaking: Department to adopt regulations to implement the law.
  • Legislative status (selected actions): introduced 1/14/2025; reported with committee amendments 6/9/2025; passed the Senate 4/22/2025; referred to Assembly committees (listed as referred to Environmental Conservation). Companion bill: A2980.

Fiscal note

  • As reported by the Senate Budget & Appropriations Committee (11/13/2025), the bill has not been certified as requiring a fiscal note.

Sponsors (selected): Senators Nathalia Fernandez, Vin Gopal, Troy Singleton; co-sponsors include Robert Jackson, Lea Webb, Carmen F. Amato, Patrick J. Diegnan, Linda R. Greenstein, Angela V. McKnight, Andrew Zwicker.

(End of summary)

Compiled from official sources — confirm details with the bill’s official record.

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