20250SB__104797AMD INTRODUCED 2026-02-12 AMENDED_SENATE 2026-04-06 AMENDED_SENATE 2026-05-14 2025 SB AMD Introduced by Senators Niello and Allen (Coauthor: Senator Ochoa Bogh)</caml:AuthorText>"?> (Coauthors: Senators Alvarado-Gil, Ochoa Bogh, Seyarto, and Valladares) (Coauthor: Assembly Member Irwin)</caml:AuthorText>"?> (Coauthors: Assembly Members Irwin and Tangipa) LEAD_AUTHOR SENATE Niello LEAD_AUTHOR SENATE Allen <caml:Contribution>COAUTHOR</caml:Contribution><caml:House>SENATE</caml:House><caml:Name>Ochoa Bogh</caml:Name></caml:Legislator>"?> COAUTHOR SENATE Alvarado-Gil COAUTHOR SENATE Ochoa Bogh COAUTHOR SENATE Seyarto COAUTHOR SENATE Valladares <caml:Contribution>COAUTHOR</caml:Contribution><caml:House>ASSEMBLY</caml:House><caml:Name>Irwin</caml:Name></caml:Legislator>"?> COAUTHOR ASSEMBLY Irwin COAUTHOR ASSEMBLY Tangipa

An act to amend Sections and 103871.2 of the Health and Safety Code, relating to public health. public health Neurodegenerative disease registry program. Existing law, until January 1, 2028, and to the extent funds are made available for these purposes, requires the State Department of Public Health to establish a system for the collection of information determining the incidence and prevalence of neurodegenerative diseases, including, but not limited to, amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease.

Existing law requires a hospital, facility, physician and surgeon, or other health care provider diagnosing or providing treatment to a patient for a neurodegenerative disease to report each case of a neurodegenerative disease to the department, as prescribed. Existing law requires the department to designate the specified neurodegenerative diseases required to be reported in the state or any part of the state. Existing law specifies that for this purpose, “neurodegenerative disease” may include, but need not be limited to, Alzheimer’s disease, multiple sclerosis, and Huntington’s disease.

This bill would require the department to establish a system for the collection of information determining the incidence and prevalence of frontotemporal degeneration (FTD). This bill would specify that “neurodegenerative disease” may also include other dementias. The bill would extend the requirements of these provisions until January 1, 2032. MAJORITY NO YES NO NO NO NO NO NO NO NO The people of the State of California do enact as follows:

SECTION 1.

Section of the Health and Safety Code is amended to read: 103871. (

a) The department shall collect data on the incidence of neurodegenerative disease in California. (

b) The department shall establish a system for the collection of information determining the incidence and prevalence of neurodegenerative diseases, including, but not limited to, amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, and frontotemporal degeneration (FTD). The department shall designate the specified neurodegenerative diseases as a disease required to be reported in the state or any part of the state. All cases of neurodegenerative disease diagnosed or treated in California shall be reported to the department. (

c) The department shall provide notification of the mandatory reporting of neurodegenerative disease on its internet website and shall also provide that information to associations representing physicians and hospitals and directly to the Medical Board of California at least days prior to requiring information be reported. (

d) A hospital, facility, physician and surgeon, or other health care provider diagnosing or providing treatment for a patient with a neurodegenerative disease shall report each case of a neurodegenerative disease to the department in a format prescribed by the department. (

e) If the hospital or other facility fails to report in a format prescribed by the department, the department’s authorized representative may access the information from the hospital or the facility and report it in the appropriate format. In these cases, the hospital or other facility shall reimburse the department or the authorized representative for its costs to access and report the information. (

f) A physician and surgeon, hospital, outpatient clinic, and any other facility, individual, or agency providing diagnostic or treatment services to a patient with a neurodegenerative disease shall grant to the department or the authorized representative access to all records that would identify a case of a neurodegenerative disease or would establish characteristics of a neurodegenerative disease, treatment of a neurodegenerative disease, or medical status of any identified patient with a neurodegenerative disease.

Willful failure to grant access to those records shall be punishable by a civil penalty of up to five hundred dollars ($500) each day access is refused. Civil penalties collected pursuant to this subdivision shall be deposited by the department in the General Fund. (

g) Except as otherwise provided in this chapter, all information collected pursuant to this

section shall be confidential. For purposes of this chapter, this information shall be referred to as “confidential information.” (

h) The program shall be under the direction of the director, who may enter into contracts, grants, or other agreements as are necessary for the conduct of the program. The award of these contracts, grants, or funding agreements shall be exempt from

Part 2 (commencing with

Section 10100) of Division of the Public Contract Code. This

chapter shall be implemented only to the extent funds are made available for its purposes. (

i) For the purposes of this section, “neurodegenerative disease” may also include, but need not be limited to, Alzheimer’s disease and other dementias, multiple sclerosis, and Huntington’s disease.

SEC.

Section 103871.2 of the Health and Safety Code is amended to read: 103871.2. This

chapter shall remain in effect only until January 1, 2032, and as of that date is repealed.