NY State Senate Bill 2025-S7431

Current Bill Status - In Senate Committee Health Committee

Introduced
- In Committee Assembly
- In Committee Senate
- On Floor Calendar Assembly
- On Floor Calendar Senate
- Passed Assembly
- Passed Senate
Delivered to Governor
Signed By Governor

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Date of Action	Assembly Actions - Lowercase Senate Actions - UPPERCASE
Apr 16, 2025	referred to health

2025-S7431 (ACTIVE) - Details

See Assembly Version of this Bill:: A8243
Current Committee:: Senate Health
Law Section:: Public Health Law
Laws Affected:: Add Art 20-C §§2020 & 2021, Pub Health L

2025-S7431 (ACTIVE) - Summary

Establishes a state frontotemporal degeneration advisory committee which shall be charged with recommending to the department long range objectives, goals and priorities, and provide advice on the planning, coordination and development of needed services.

2025-S7431 (ACTIVE) - Sponsor Memo

                                 
BILL NUMBER: S7431

SPONSOR: HINCHEY
 
TITLE OF BILL:

An act to amend the public health law, in relation to establishing a
state frontotemporal degeneration advisory committee

 
PURPOSE:

To create a State frontotemporal degeneration (FTD) advisory committee
to advise the Department of Health on matters related to FTD, including
issuing annual reports.

 
SUMMARY OF PROVISIONS:

Section one adds a new article 20-c to the public health law creating a
state frontotemporal degeneration (FTD) advisory committee. The commit-
tee shall recommend to the Department objectives, goals, and priorities
related to FTD, including advising on planning, coordination, and devel-
opment of services.

The committee shall review and consider FTD-related information such as
occurrence rates and demographic data and information on treatment and
availability and services.

Members shall be selected by the Governor, the legislature, and the
commissioner, and shall include a variety of interested parties such as
relevant practitioners and experts, patients and caregivers, and advoca-
cy organizations.

Section one also includes a requirement for annual reporting by the
committee, who shall provide the legislature and Governor with a yearly
update on FTD rates, known advances in treatment, and resources avail-
able for patients. The report shall be posted on DOH's website.

Section two is the effective date (30 days.)

 
JUSTIFICATION:

Frontotemporal Degeneration (FTD) affects hundreds of thousands of Amer-
icans and is also the most common form of dementia in people under 60,
but is one of the least known diseases of our time. Often first misdiag-
nosed as a mental illness, Alzheimer's, or Parkinson's, it takes nearly
four years, on average, for a person to get an accurate diagnosis due in
part to the fact that there is very little research or funding allocated
to the treatment, prevention or understanding of FTD.

What is known is that FTD causes irreversible damage to the frontal and
temporal lobes of the brain, which brings changes to personality, behav-
ior and language. The effects of this form of dementia are felt, not
only by the person inflicted, but by every family member, requiring full
24/7 care and a duration that spans nearly a decade, resulting in an
economic burden that is almost twice that of Alzheimer's.

A better understanding of this disease, including increased awareness
among the public and the medical community, is needed if we are going to
one day eradicate FTD. Separate legislation would create an FTD registry
to be managed by the Department of Health. This bill complements it by
creating an FTD advisory committee. New York has several other condi-
tion-specific committees that advise the Department, including the Trau-
matic Brain Injury Services Coordinating Council and the Alzheimer's
Disease and Other Dementia Coordinating Council.

This bill will improve knowledge and programming by bringing together
FTD patients, caregivers, advocates, and clinical experts to review the
most current research, occurrence data to the extent known, and service
availability for New Yorkers living with FTD and their families. It will
provide a forum for FTD discussion and advocacy to assist the Department
in designing and implementing related programming, as well as expanding
information and public awareness through annual reporting to be posted
publicly by the Department.

 
LEGISLATIVE HISTORY:

New bill

 
FISCAL IMPLICATION:

Minimal costs related to committee operation and reporting requirements

 
EFFECTIVE DATE:
This act shall take effect on the thirtieth day after it shall have
become law

2025-S7431 (ACTIVE) - Bill Text download pdf

                             
                     S T A T E   O F   N E W   Y O R K
 ________________________________________________________________________
 
                                   7431
 
                        2025-2026 Regular Sessions
 
                             I N  S E N A T E
 
                              April 16, 2025
                                ___________
 
 Introduced  by  Sen. HINCHEY -- read twice and ordered printed, and when
   printed to be committed to the Committee on Health
 
 AN ACT to amend the public health law, in  relation  to  establishing  a
   state frontotemporal degeneration advisory committee
 
   THE  PEOPLE OF THE STATE OF NEW YORK, REPRESENTED IN SENATE AND ASSEM-
 BLY, DO ENACT AS FOLLOWS:
 
   Section 1. The public health law is amended by adding  a  new  article
 20-C to read as follows:
                                ARTICLE 20-C
              FRONTOTEMPORAL DEGENERATION ADVISORY COMMITTEE
 SECTION 2020. FRONTOTEMPORAL DEGENERATION ADVISORY COMMITTEE.
         2021. REPORTS.
   §  2020.  FRONTOTEMPORAL  DEGENERATION  ADVISORY  COMMITTEE.    1. THE
 DEPARTMENT SHALL, WITHIN NINETY DAYS  OF  THE  EFFECTIVE  DATE  OF  THIS
 SECTION,  ESTABLISH  A  FRONTOTEMPORAL  DEGENERATION  ADVISORY COMMITTEE
 WHICH SHALL BE CHARGED WITH RECOMMENDING TO THE  DEPARTMENT  LONG  RANGE
 OBJECTIVES,  GOALS  AND  PRIORITIES. IT SHALL ALSO PROVIDE ADVICE ON THE
 PLANNING, COORDINATION AND DEVELOPMENT OF  NEEDED  SERVICES.  IN  MAKING
 SUCH RECOMMENDATIONS, THE COMMITTEE SHALL REVIEW AND CONSIDER:
   (A)  RATES  OF  CLINICAL  DIAGNOSIS  OF FRONTOTEMPORAL DEGENERATION BY
 COUNTY;
   (B) HOW MANY RECORDS HAVE BEEN INCLUDED AND REPORTED INTO THE  DEPART-
 MENT'S FRONTOTEMPORAL DEGENERATION REGISTRY;
   (C) DEMOGRAPHIC INFORMATION SUCH AS PATIENTS BY AGE, GENDER AND RACE;
   (D) THE NUMBER OF NEW DIAGNOSES IN THE PRECEDING YEAR;
   (E) ADVANCEMENTS IN THE TREATMENT OF FRONTOTEMPORAL DEGENERATION;
   (F)  THE  AVAILABILITY  AND ACCESSIBILITY OF RESOURCES FOR THE CARE OF
 PATIENTS WITH FRONTOTEMPORAL DEGENERATION AND ANY DISPARITIES  THAT  MAY
 EXIST IN THE REGIONAL AVAILABILITY OF SERVICES;
   (G)  INFORMATION RELATED TO THE COST OF CARE FOR FRONTOTEMPORAL DEGEN-
 ERATION DISORDERS; AND
 
  EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                       [ ] is old law to be omitted.
                                                            LBD11679-01-5

 S. 7431                             2
 
   (H) FREQUENCY OF AND CAUSES OF MISDIAGNOSIS RELATED TO  FRONTOTEMPORAL
 DEGENERATION DISORDERS.
   2.  MEMBERS  OF  THE  COMMITTEE SHALL BE SELECTED BY THE GOVERNOR, THE
 LEGISLATURE AND THE COMMISSIONER. THE GOVERNOR, THE TEMPORARY  PRESIDENT
 OF  THE  SENATE,  THE SPEAKER OF THE ASSEMBLY AND THE COMMISSIONER SHALL
 EACH SELECT TWO COMMITTEE MEMBERS AND THE MINORITY LEADERS OF THE SENATE
 AND THE ASSEMBLY SHALL EACH SELECT ONE COMMITTEE MEMBER.  MEMBERSHIP  OF
 THE COMMITTEE SHALL INCLUDE:
   (I) A NEUROLOGIST;
   (II) A SPEECH PATHOLOGIST;
   (III) A PRIMARY CARE PROVIDER;
   (IV) A PHYSICIAN INFORMATICIST;
   (V) A PATIENT LIVING WITH FRONTOTEMPORAL DEGENERATION;
   (VI) A CAREGIVER OF A PATIENT LIVING WITH FRONTOTEMPORAL DEGENERATION;
   (VII) A PUBLIC HEALTH PROFESSIONAL;
   (VIII) A POPULATION HEALTH RESEARCHER FAMILIAR WITH REGISTRIES;
   (IX) A FRONTOTEMPORAL DEGENERATION RESEARCHER;
   (X)  A  MEMBER  OF  AN  ORGANIZATION  THAT  RAISES AWARENESS ABOUT AND
 PROMOTES RESEARCH FOR THE TREATMENT OF FRONTOTEMPORAL DEGENERATION; AND
   (XI) ANYONE ELSE THE COMMISSIONER DEEMS NECESSARY.
   3. THE MEMBERS OF THE COMMITTEE  SHALL  RECEIVE  NO  COMPENSATION  FOR
 THEIR SERVICES, BUT SHALL BE ALLOWED THEIR ACTUAL AND NECESSARY EXPENSES
 INCURRED  IN  THE  PERFORMANCE OF THEIR DUTIES HEREUNDER, SUBJECT TO THE
 APPROVAL OF THE COMMISSIONER.
   § 2021. REPORTS. 1. ON OR BEFORE JANUARY FIRST, TWO  THOUSAND  TWENTY-
 SEVEN,  AND  EVERY  YEAR THEREAFTER, THE DEPARTMENT, IN CONJUNCTION WITH
 THE ADVISORY COMMITTEE, SHALL REPORT TO THE LEGISLATURE AND  GOVERNOR  A
 YEARLY PROGRAM SUMMARY UPDATE ON THE RATE OF CLINICAL DIAGNOSES OF FRON-
 TOTEMPORAL  DEGENERATION  DISORDERS  IN  THE  STATE.   SUCH REPORT SHALL
 INCLUDE:
   (A) THE INCIDENCE AND PREVALENCE  OF  FRONTOTEMPORAL  DEGENERATION  BY
 COUNTY;
   (B)  HOW  MANY RECORDS HAVE BEEN INCLUDED AND REPORTED INTO THE REGIS-
 TRY;
   (C) DEMOGRAPHIC INFORMATION SUCH AS PATIENTS BY AGE, GENDER AND RACE;
   (D) THE NUMBER OF NEW DIAGNOSES IN THE PRECEDING YEAR;
   (E) A SUMMARY OF ADVANCEMENTS IN THE  TREATMENT  AND  NEWLY  DEVELOPED
 TREATMENTS OF FRONTOTEMPORAL DEGENERATION;
   (F)  A  LIST  OF RESOURCES FOR THE FAMILIES OF PATIENTS DIAGNOSED WITH
 FRONTOTEMPORAL DEGENERATION DISORDER, WHICH SHALL  INCLUDE  BUT  NOT  BE
 LIMITED  TO SUPPORT FROM THE STATE OR FEDERAL GOVERNMENT, SUPPORT GROUPS
 AND HELPLINES;
   (G) THE RESOURCES AVAILABLE FOR THE CARE OF PATIENTS WITH FRONTOTEMPO-
 RAL DEGENERATION BY REGION;
   (H) INFORMATION RELATED TO THE COST OF CARE FOR PATIENTS WHO HAVE BEEN
 DIAGNOSED WITH FRONTOTEMPORAL DEGENERATION DISORDER; AND
   (I) THE NUMBER OF PATIENTS DIAGNOSED WITH FRONTOTEMPORAL  DEGENERATION
 DISORDER  WHO  HAD  PREVIOUSLY RECEIVED AN INCORRECT DIAGNOSIS FOR THEIR
 FRONTOTEMPORAL DEGENERATION RELATED SYMPTOMS AND THE AMOUNT OF  TIME  IT
 TOOK TO RECEIVE THE FRONTOTEMPORAL DEGENERATION DISORDER DIAGNOSIS.
   2.  THE  YEARLY  REPORT SHALL BE PUBLISHED IN A DOWNLOADABLE FORMAT ON
 THE DEPARTMENT'S WEBSITE AND THE DESIGNATED NEW YORK STATE  FRONTOTEMPO-
 RAL DEGENERATION REGISTRY WEBSITE.
   §  2.  This  act shall take effect on the thirtieth day after it shall
 have become a law.

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Senate Bill S7431

Sponsored By

Current Bill Status - In Senate Committee Health Committee

Actions

2025-S7431 (ACTIVE) - Details

2025-S7431 (ACTIVE) - Summary

2025-S7431 (ACTIVE) - Sponsor Memo

2025-S7431 (ACTIVE) - Bill Text download pdf

Comments

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Sponsored By

Michelle Hinchey

Current Bill Status - In Senate Committee Health Committee

Actions

2025-S7431 (ACTIVE) - Details

2025-S7431 (ACTIVE) - Summary

2025-S7431 (ACTIVE) - Sponsor Memo

2025-S7431 (ACTIVE) - Bill Text download pdf

Comments