California 2025-2026 Regular Session

California Senate Bill SB1047

Introduced
2/12/26  
Refer
2/26/26  
Report Pass
3/26/26  
Refer
4/6/26  
Report Pass
3/26/26  
Refer
4/6/26  
Report Pass
5/14/26  

Caption

Neurodegenerative disease registry program.

Impact

The bill emphasizes mandatory reporting by healthcare providers on all diagnosed cases of neurodegenerative diseases, introducing penalties for noncompliance. By enforcing these reporting standards, the legislation not only facilitates better tracking of disease incidence but also ensures a more transparent and accessible health system. It aims to improve research and healthcare planning associated with neurodegenerative diseases, thus potentially leading to better resource allocation and treatment options for affected patients.

Summary

Senate Bill 1047, introduced by Senators Niello and Allen, aims to amend the Health and Safety Code by extending the requirements for the State Department of Public Health to collect data on neurodegenerative diseases in California until 2032. This legislation extends the existing mandate, which previously required the department to monitor the incidence and prevalence of neurodegenerative diseases such as amyotrophic lateral sclerosis (ALS) and Alzheimer's disease, along with newly included conditions like frontotemporal degeneration (FTD). This amendment acknowledges the increasing need for comprehensive data on these critical health issues and aims to inform public health strategies effectively.

Sentiment

The sentiment around SB 1047 appears to be largely supportive among healthcare advocates and public health officials. Proponents argue that the legislation is a necessary step in addressing the rising challenges posed by neurodegenerative diseases, reflecting a proactive strategy to enhance community health outcomes. However, concerns might arise regarding the implications of mandatory reporting on patient confidentiality and the potential burden on healthcare providers, which some stakeholders may view as burdensome.

Contention

A notable point of contention centers on the implications of data access and reporting. The bill stipulates that hospitals and healthcare providers must grant the department access to all relevant medical records; failure to comply could result in financial penalties. This raises questions about patient privacy and the ethical considerations surrounding mandatory sharing of health information. While intended to enhance data collection, these requirements could be viewed as intrusive, sparking discussions regarding the balance between public health needs and individual privacy rights.

Companion Bills

No companion bills found.

Previously Filed As

CA SCR80

Frontotemporal Degeneration Awareness Week.

CA H1443

Parkinson's Disease Registry

CA S1684

Parkinson's Disease Registry

CA S0578

Alzheimer's Disease Awareness Initiative

CA SJR004

Frontotemporal Degeneration Awareness Week

CA H0513

Alzheimer's Disease Awareness Initiative

CA SR12

Designating September 21-28, 2025, As Frontotemporal Degeneration Awareness Week In The State Of Delaware.

CA ACR132

Rare Disease Day.

CA H1445

Pub. Rec./Parkinson's Disease Registry

CA SCR140

Parkinson’s Disease Awareness Month.

Similar Bills

CA AB829

An act to add and repeal Article 1 (commencing with Section 18700) of Chapter 3 of Part 10.

FL S1784

PSP Awareness Month

FL H8045

PSP Awareness Month

CA SCR140

Parkinson’s Disease Awareness Month.

CA ACR160

Parkinson’s Disease Awareness Month.

CA AB2442

Peptides.

DE SR12

Designating September 21-28, 2025, As Frontotemporal Degeneration Awareness Week In The State Of Delaware.

CA SCR80

Frontotemporal Degeneration Awareness Week.