NY State Senate Bill 2023-S7874

Current Bill Status - In Assembly 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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Actions

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	Assembly Actions - Lowercase Senate Actions - UPPERCASE
Jun 05, 2024	referred to health delivered to assembly passed senate
May 28, 2024	ordered to third reading cal.1492 committee discharged and committed to rules
May 15, 2024	reported and committed to finance
Jan 03, 2024	referred to health

Votes

- Jun 5, 2024 - Floor Vote
  S7874
  
  59
  
  Aye
  
  0
  
  Nay
  
  1
  
  Absent
  
  2
  
  Excused
  
  0
  
  Abstained
  - - Floor Vote: Jun 5, 2024
      
      aye (59)
      
      Addabbo Jr.
      
      Ashby
      
      Bailey
      
      Borrello
      
      Breslin
      
      Brisport
      
      Brouk
      
      Canzoneri-Fitzpatrick
      
      Chu
      
      Cleare
      
      Comrie
      
      Cooney
      
      Felder
      
      Fernandez
      
      Gallivan
      
      Gianaris
      
      Gonzalez
      
      Gounardes
      
      Griffo
      
      Harckham
      
      Helming
      
      Hinchey
      
      Hoylman-Sigal
      
      Jackson
      
      Kavanagh
      
      Krueger
      
      Lanza
      
      Liu
      
      Mannion
      
      Martinez
      
      Martins
      
      Mattera
      
      May
      
      Mayer
      
      Murray
      
      Myrie
      
      O'Mara
      
      Oberacker
      
      Ortt
      
      Palumbo
      
      Persaud
      
      Ramos
      
      Rhoads
      
      Rivera
      
      Rolison
      
      Ryan
      
      Salazar
      
      Scarcella-Spanton
      
      Sepúlveda
      
      Serrano
      
      Skoufis
      
      Stavisky
      
      Stec
      
      Stewart-Cousins
      
      Tedisco
      
      Thomas
      
      Webb
      
      Weber
      
      Weik
      
      absent (1)
      
      Sanders Jr.
      
      excused (2)
      
      Parker
      
      Walczyk
  May 28, 2024 - Rules Committee Vote
  S7874
  
  18
  
  Aye
  
  0
  
  Nay
  
  1
  
  Aye with Reservations
  
  0
  
  Absent
  
  1
  
  Excused
  
  0
  
  Abstained
  - - Rules Committee Vote: May 28, 2024
      
      aye (18)
      
      Addabbo Jr.
      
      Bailey
      
      Breslin
      
      Comrie
      
      Fernandez
      
      Gallivan
      
      Gianaris
      
      Helming
      
      Lanza
      
      Liu
      
      Mayer
      
      O'Mara
      
      Ortt
      
      Parker
      
      Sepúlveda
      
      Stec
      
      Stewart-Cousins
      
      Thomas
      
      aye wr (1)
      
      Griffo
      
      excused (1)
      
      Krueger
  May 15, 2024 - Health Committee Vote
  S7874
  
  14
  
  Aye
  
  0
  
  Nay
  
  1
  
  Aye with Reservations
  
  0
  
  Absent
  
  0
  
  Excused
  
  0
  
  Abstained
  - - Health Committee Vote: May 15, 2024
      
      aye (14)
      
      Ashby
      
      Brouk
      
      Felder
      
      Gallivan
      
      Hoylman-Sigal
      
      Mannion
      
      Martins
      
      May
      
      Myrie
      
      Rivera
      
      Salazar
      
      Stec
      
      Thomas
      
      Webb
      
      aye wr (1)
      
      Rhoads

co-Sponsors

2023-S7874 (ACTIVE) - Details

See Assembly Version of this Bill:: A9938
Current Committee:: Assembly Health
Law Section:: Public Health Law
Laws Affected:: Add Art 2 Title 9 §§269-a - 269-d, Pub Health L

2023-S7874 (ACTIVE) - Summary

Establishes a state frontotemporal degeneration registry; designates frontotemporal degeneration and related dementias as diseases required to be reported in the state; establishes a frontotemporal degeneration registry advisory committee to assist in the development and implementation of the registry; allows a patient to opt out of participation in the registry

2023-S7874 (ACTIVE) - Sponsor Memo

                                 
BILL NUMBER: S7874

SPONSOR: HINCHEY
 
TITLE OF BILL:

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

 
PURPOSE:

To require hospitals and other health care providers to report the diag-
nosis of frontotemporal degeneration to the Department of Health and to
require the Department of Health to create and publish the data
collected in a registry.

 
SUMMARY OF PROVISIONS:

Section one adds a new tide nine to the public health law to authorize
the creation of a state frontotemporal degeneration (FTD) registry. This
section also defines Frontotemporal Degeneration and Dementia generally
for the purposes of this registry. It directs the Department of Health
to create a frontotenvoral degeneration registry advisory committee and

establishes the membership of the committee. The advisory committee is
directed to give guidance to the Department on what dementias, aside
from FTD, must be reported to the department. This section also requires
the Department, in conjunction with the advisory committee, to create
yearly reports for the Legislature and the Executive on the incidence
and prevalence of FTD and other dementias across New York.  Finally, the
department is directed to create a webpage for public viewing of the
registry and other related information.

Section Two states the effective date.

 
JUSTIFICATION:

Frontotemporal Degeneration (FTD) affects hundreds of thousands of Amer-
icans and is also the most common form of dementia in people under 60,
and yet, it is one of the least known diseases of our time.  Often first
misdiagnosed as a mental illness, Alzheimers, 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, behavior 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 its prevalence, along
with increased awareness among the public and the medical community at
large, is needed if we are going to work to one day eradicate FTD, but
to date, there is no focused data collection. This bill creates the
first statewide FTD registry in the country which will allow for volun-
tary tracking of all diagnoses of Frontotemporal Degeneration and other
forms of dementia so that we can understand the full scope of this
disease. This legislation will bolster awareness among the medical
community helping to cut down on misdiagnoses, will create an advisory
council to help guide the Department of Health on FTD and dementia
related care, provide a more holistic picture of the current state of
FTD and other dementias across New York, and set up a public resource
guide through the Department of Health for those seeking help and
support with an FTD diagnosis.

In order to find a cure, we must first understand the disease. This bill
is the first step in raising awareness and collecting the data that we
need to save lives.

 
LEGISLATIVE HISTORY:

New Bill.

 
FISCAL IMPLICATION:

To be Determined.

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

2023-S7874 (ACTIVE) - Bill Text download pdf

                             
                     S T A T E   O F   N E W   Y O R K
 ________________________________________________________________________
 
                                   7874
 
                             I N  S E N A T E
 
                              January 3, 2024
                                ___________
 
 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 registry
 
   THE  PEOPLE OF THE STATE OF NEW YORK, REPRESENTED IN SENATE AND ASSEM-
 BLY, DO ENACT AS FOLLOWS:

   Section 1. Article 2 of the public health law is amended by  adding  a
 new title 9 to read as follows:
                                 TITLE IX
                     STATE FRONTOTEMPORAL DEGENERATION
                                 REGISTRY
 SECTION 269-A. DEFINITIONS.
         269-B. REGISTRY ESTABLISHED.
         269-C. REPORTS.
         269-D. NEW   YORK  STATE  FRONTOTEMPORAL  DEGENERATION  RESEARCH
                  REGISTRY WEBSITE.
   § 269-A. DEFINITIONS. FOR THE PURPOSES OF THIS TITLE:
   1. "FRONTOTEMPORAL DEGENERATION" MEANS A GROUP OF DISORDERS CAUSED  BY
 PROGRESSIVE NERVE CELL LOSS IN THE BRAIN'S FRONTAL LOBES OR ITS TEMPORAL
 LOBES  WHICH  CAN LEAD TO LOSS OF FUNCTION IN THESE BRAIN REGIONS, WHICH
 VARIABLY CAUSE DETERIORATION IN BEHAVIOR, PERSONALITY AND/OR  DIFFICULTY
 WITH  PRODUCING  OR  COMPREHENDING  LANGUAGE.   FOR THE PURPOSES OF THIS
 TITLE FRONTOTEMPORAL DEGENERATION IS THE SAME AS "FTD".
   2. "DEMENTIA" MEANS A USUALLY  PROGRESSIVE  CONDITION  MARKED  BY  THE
 DEVELOPMENT OF MULTIPLE COGNITIVE DEFICITS, WHICH MAY INCLUDE BUT IS NOT
 EXCLUSIVE  TO  MEMORY IMPAIRMENT, APHASIA, AND THE INABILITY TO PLAN AND
 INITIATE COMPLEX BEHAVIOR. DEMENTIA INCLUDES BUT IS NOT LIMITED TO  FTD,
 ALZHEIMER'S DISEASE, LEWY BODY DEMENTIA AND VASCULAR DEMENTIA.
   §  269-B. REGISTRY ESTABLISHED. 1. THE DEPARTMENT, IN CONJUNCTION WITH
 THE STATE OFFICE FOR THE AGING, SHALL COLLECT DATA ON THE  INCIDENCE  OF
 FRONTOTEMPORAL  DEGENERATION  IN  THIS  STATE  AND OTHER EPIDEMIOLOGICAL
 DATA. THE REGISTRY AND SYSTEM OF COLLECTION AND DISSEMINATION OF  INFOR-
 MATION  SHALL  BE UNDER THE DIRECTION OF THE COMMISSIONER, WHO MAY ENTER
 INTO CONTRACTS, GRANTS OR OTHER AGREEMENTS  AS  ARE  NECESSARY  FOR  THE
 CONDUCT OF THE REGISTRY.
   2.  (A) THE DEPARTMENT SHALL, WITHIN NINETY DAYS OF THE EFFECTIVE DATE
 OF THIS SECTION, ESTABLISH A FRONTOTEMPORAL DEGENERATION REGISTRY  ADVI-

 
  EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                       [ ] is old law to be omitted.
                                                            LBD11799-03-3
 S. 7874                             2

 SORY  COMMITTEE  TO  ASSIST IN THE DEVELOPMENT AND IMPLEMENTATION OF THE
 REGISTRY; DETERMINE WHAT DATA SHALL BE COLLECTED,  IN  ADDITION  TO  THE
 DATA  REQUIRED  BY  SECTION  TWO  HUNDRED SIXTY-NINE-C OF THIS TITLE FOR
 ANNUAL  REPORTS;  AND  GENERALLY, ADVISE THE DEPARTMENT.   FOLLOWING THE
 COMPLETION OF THE REGISTRY, THE  ADVISORY  COMMITTEE  SHALL  ASSIST  THE
 DEPARTMENT  WITH THE CREATION AND PUBLICATION OF THE REPORTS REQUIRED BY
 SECTION TWO HUNDRED SIXTY-NINE-C OF THIS TITLE.
   (B) 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.  (A) THE DEPARTMENT SHALL DESIGNATE FRONTOTEMPORAL DEGENERATION AND
 RELATED DEMENTIAS AS ADVISED BY  THE  ADVISORY  COMMITTEE  AS  DEMENTIAS
 REQUIRED TO BE REPORTED IN THE STATE OR ANY PART OF THE STATE.
   (B)  THE  DEPARTMENT  SHALL  ESTABLISH A SYSTEM FOR THE COLLECTION AND
 DISSEMINATION OF INFORMATION DETERMINING THE INCIDENCE AND PREVALENCE OF
 FRONTOTEMPORAL DEGENERATION AND RELATED DEMENTIAS,  AS  ADVISED  BY  THE
 ADVISORY COMMITTEE.
   (C)  ALL  CASES OF FRONTOTEMPORAL DEGENERATION DIAGNOSED OR TREATED IN
 THIS STATE SHALL BE REPORTED TO THE DEPARTMENT, PROVIDED THE MERE  INCI-
 DENCE  OF  A  PATIENT WITH FRONTOTEMPORAL DEGENERATION SHALL BE THE SOLE
 REQUIRED INFORMATION FOR THIS REGISTRY FOR ANY PATIENT WHO  CHOOSES  NOT
 TO  PARTICIPATE.  FOR  THE  SUBSET OF PATIENTS WHO CHOOSE NOT TO PARTIC-
 IPATE, NO FURTHER DATA SHALL BE REPORTED TO THE REGISTRY. THE DEPARTMENT
 MAY CREATE, REVIEW AND REVISE A LIST OF DATA POINTS REQUIRED AS PART  OF
 MANDATED  FRONTOTEMPORAL DEGENERATION REPORTING UNDER THIS SECTION. SUCH
 LIST SHALL INCLUDE, BUT NOT BE LIMITED TO NECESSARY TRIGGERING  DIAGNOS-
 TIC  CONDITIONS,  CONSISTENT  WITH  THE LATEST INTERNATIONAL STATISTICAL
 CLASSIFICATION OF DISEASES AND RELATED HEALTH  PROBLEMS,  AND  RESULTING
 CASE  DATA  INCLUDING,  BUT  NOT  LIMITED  TO,  DIAGNOSIS, TREATMENT AND
 SURVIVAL. THE DEPARTMENT MAY IMPLEMENT  AND  ADMINISTER  THIS  PARAGRAPH
 THROUGH  A BULLETIN, OR SIMILAR INSTRUCTION, TO PROVIDERS WITHOUT TAKING
 REGULATORY ACTION.
   (D) THE DEPARTMENT SHALL PROVIDE NOTIFICATION OF THE MANDATORY REPORT-
 ING OF FRONTOTEMPORAL DEGENERATION AND OTHER RELATED  DEMENTIAS  ON  ITS
 WEBSITE  AND  MAY  ALSO PROVIDE THAT INFORMATION TO PROFESSIONAL ASSOCI-
 ATIONS REPRESENTING PHYSICIANS, NURSE PRACTITIONERS,  AND  HOSPITALS  AT
 LEAST NINETY DAYS PRIOR TO REQUIRING INFORMATION BE REPORTED.
   (E)  A HOSPITAL, FACILITY, PHYSICIAN, SURGEON, PHYSICIAN ASSISTANT AND
 NURSE PRACTITIONERS WHO DIAGNOSE OR ARE  TREATING  A  PATIENT  DIAGNOSED
 WITH  FRONTOTEMPORAL  DEGENERATION  OR  OTHER DEMENTIAS AND HAVE PRIMARY
 RESPONSIBILITY FOR THE TREATMENT AND CARE OF THE PATIENT FOR  FRONTOTEM-
 S. 7874                             3
 
 PORAL  DEGENERATION OR OTHER DEMENTIAS SHALL REPORT EACH CASE OF FRONTO-
 TEMPORAL DEGENERATION OR OTHER DEMENTIAS TO THE DEPARTMENT IN  A  FORMAT
 PRESCRIBED  BY  THE  DEPARTMENT.   THE DEPARTMENT IS AUTHORIZED TO ENTER
 INTO DATA SHARING CONTRACTS WITH DATA REPORTING ENTITIES AND THEIR ASSO-
 CIATED  ELECTRONIC MEDICAL RECORD SYSTEMS VENDORS TO SECURELY AND CONFI-
 DENTIALLY RECEIVE INFORMATION  RELATED  TO  FRONTOTEMPORAL  DEGENERATION
 TESTING, DIAGNOSIS AND TREATMENT.
   4.  ALL  PATIENTS  DIAGNOSED WITH FRONTOTEMPORAL DEGENERATION OR OTHER
 DEMENTIAS, AS ADVISED BY THE ADVISORY COMMITTEE,  SHALL  BE  PROVIDED  A
 NOTICE IN WRITING AND ORALLY REGARDING THE COLLECTION OF INFORMATION AND
 PATIENT DATA ON FRONTOTEMPORAL DEGENERATION. PATIENTS WHO DO NOT WISH TO
 PARTICIPATE  IN  THE COLLECTION OF DATA FOR PURPOSES OF RESEARCH IN THIS
 REGISTRY SHALL AFFIRMATIVELY OPT-OUT IN WRITING AFTER AN OPPORTUNITY  TO
 REVIEW  THE  DOCUMENTS  AND ASK QUESTIONS.   THE PATIENT'S CAREGIVER MAY
 OPT-OUT ON THE PATIENT'S BEHALF, IF THE PATIENT IS UNABLE TO  DO  SO  OF
 THEIR  OWN ACCORD.   NO PATIENT SHALL BE REQUIRED TO PARTICIPATE IN THIS
 REGISTRY.
   5. THE DEPARTMENT MAY ENTER INTO AGREEMENTS TO FURNISH DATA  COLLECTED
 IN  THIS  REGISTRY  TO  OTHER STATES' FRONTOTEMPORAL DEGENERATION REGIS-
 TRIES,  FEDERAL  FRONTOTEMPORAL  DEGENERATION  CONTROL  AGENCIES,  LOCAL
 HEALTH  OFFICERS,  OR HEALTH RESEARCHERS FOR THE STUDY OF FRONTOTEMPORAL
 DEGENERATION. BEFORE CONFIDENTIAL  INFORMATION  IS  DISCLOSED  TO  THOSE
 AGENCIES,   OFFICERS,   RESEARCHERS,  OR  OUT-OF-STATE  REGISTRIES,  THE
 REQUESTING ENTITY SHALL AGREE IN WRITING TO MAINTAIN THE CONFIDENTIALITY
 OF THE INFORMATION, AND IN THE CASE OF RESEARCHERS, SHALL ALSO  DO  BOTH
 OF THE FOLLOWING:
   (A)  OBTAIN  APPROVAL  OF  THEIR COMMITTEE FOR THE PROTECTION OF HUMAN
 SUBJECTS ESTABLISHED IN ACCORDANCE WITH PART 46 (COMMENCING WITH SECTION
 46.101) OF TITLE 45 OF THE CODE OF FEDERAL REGULATIONS; AND
   (B) PROVIDE DOCUMENTATION TO THE DEPARTMENT THAT DEMONSTRATES  TO  THE
 DEPARTMENT'S SATISFACTION THAT THE ENTITY HAS ESTABLISHED THE PROCEDURES
 AND ABILITY TO MAINTAIN THE CONFIDENTIALITY OF THE INFORMATION.
   6.  EXCEPT  AS  OTHERWISE  PROVIDED  IN  THIS SECTION, ALL INFORMATION
 COLLECTED PURSUANT TO THIS SECTION SHALL BE CONFIDENTIAL.  FOR  PURPOSES
 OF  THIS  SECTION, THIS INFORMATION SHALL BE REFERRED TO AS CONFIDENTIAL
 INFORMATION. TO ENSURE PRIVACY, THE DEPARTMENT SHALL PROMULGATE A CODING
 SYSTEM THAT REMOVES ANY IDENTIFYING INFORMATION ABOUT THE PATIENT.
   7. (A) NOTWITHSTANDING ANY OTHER LAW, A DISCLOSURE AUTHORIZED BY  THIS
 SECTION  SHALL  INCLUDE  ONLY  THE  INFORMATION NECESSARY FOR THE STATED
 PURPOSE OF THE REQUESTED DISCLOSURE, USED FOR THE APPROVED PURPOSE,  AND
 NOT BE FURTHER DISCLOSED.
   (B)  PROVIDED THE SECURITY OF CONFIDENTIALITY HAS BEEN DOCUMENTED, THE
 FURNISHING OF CONFIDENTIAL INFORMATION TO THE DEPARTMENT OR ITS  AUTHOR-
 IZED REPRESENTATIVE IN ACCORDANCE WITH THIS SECTION SHALL NOT EXPOSE ANY
 PERSON,  AGENCY OR ENTITY FURNISHING INFORMATION TO LIABILITY, AND SHALL
 NOT BE CONSIDERED A WAIVER OF ANY PRIVILEGE OR A VIOLATION OF  A  CONFI-
 DENTIAL RELATIONSHIP.
   (C)  THE  DEPARTMENT  SHALL MAINTAIN AN ACCURATE RECORD OF ALL PERSONS
 WHO ARE GIVEN ACCESS  TO  CONFIDENTIAL  INFORMATION.  THE  RECORD  SHALL
 INCLUDE:    THE  NAME  OF  THE  PERSON  AUTHORIZING ACCESS; NAME, TITLE,
 ADDRESS, AND ORGANIZATIONAL AFFILIATION OF PERSONS GIVEN  ACCESS;  DATES
 OF ACCESS; AND THE SPECIFIC PURPOSE FOR WHICH INFORMATION IS TO BE USED.
 THE  RECORD  OF  ACCESS SHALL BE OPEN TO PUBLIC INSPECTION DURING NORMAL
 OPERATING HOURS OF THE DEPARTMENT.
   (D) NOTWITHSTANDING ANY OTHER LAW, CONFIDENTIAL INFORMATION SHALL  NOT
 BE  AVAILABLE  FOR  SUBPOENA,  SHALL  NOT  BE DISCLOSED, DISCOVERABLE OR
 S. 7874                             4
 
 COMPELLED TO BE PRODUCED IN ANY CIVIL, CRIMINAL, ADMINISTRATIVE OR OTHER
 PROCEEDING. CONFIDENTIAL INFORMATION SHALL NOT BE DEEMED  ADMISSIBLE  AS
 EVIDENCE  IN  ANY  CIVIL,  CRIMINAL, ADMINISTRATIVE OR OTHER TRIBUNAL OR
 COURT FOR ANY REASON.
   (E)  THIS SUBDIVISION DOES NOT PROHIBIT THE PUBLICATION BY THE DEPART-
 MENT OF REPORTS AND STATISTICAL COMPILATIONS THAT  DO  NOT  IN  ANY  WAY
 IDENTIFY INDIVIDUAL CASES OR INDIVIDUAL SOURCES OF INFORMATION.
   (F) NOTWITHSTANDING THE RESTRICTIONS IN THIS SUBDIVISION, THE INDIVID-
 UAL TO WHOM THE INFORMATION PERTAINS SHALL HAVE ACCESS TO HIS OR HER OWN
 INFORMATION.
   8.  THIS SECTION DOES NOT PREEMPT THE AUTHORITY OF FACILITIES OR INDI-
 VIDUALS PROVIDING DIAGNOSTIC OR  TREATMENT  SERVICES  TO  PATIENTS  WITH
 FRONTOTEMPORAL DEGENERATION TO MAINTAIN THEIR OWN FACILITY-BASED FRONTO-
 TEMPORAL DEGENERATION REGISTRIES.
   §  269-C.  REPORTS. 1.  ON OR BEFORE JANUARY FIRST, TWO THOUSAND TWEN-
 TY-FIVE, 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 INCIDENCE AND PREVALENCE OF FRONTO-
 TEMPORAL DEGENERATION 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 AND OTHER DEMENTIAS, 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)  THE AVERAGE YEARLY COST OF CARE FOR A PATIENT WITH FRONTOTEMPORAL
 DEGENERATION; AND
   (I) THE NUMBER OF PATIENTS WITH FRONTOTEMPORAL  DEGENERATION  WHO  HAD
 PREVIOUSLY  RECEIVED  AN  INCORRECT  DIAGNOSIS  FOR THEIR FRONTOTEMPORAL
 DEGENERATION RELATED SYMPTOMS AND THE AMOUNT OF TIME IT TOOK TO  RECEIVE
 THE CORRECT 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 RESEARCH REGISTRY WEBSITE.
   §  269-D. NEW YORK STATE FRONTOTEMPORAL DEGENERATION RESEARCH REGISTRY
 WEBSITE. ON OR BEFORE  JANUARY  FIRST,  TWO  THOUSAND  TWENTY-FIVE,  THE
 DEPARTMENT  SHALL  CREATE  AND  MAINTAIN  A WEBPAGE CALLED THE "NEW YORK
 STATE FRONTOTEMPORAL DEGENERATION RESEARCH REGISTRY"  WHERE  THE  PUBLIC
 MAY  VIEW INFORMATION RELATED TO THE REGISTRY, A YEARLY PROGRAM SUMMARY,
 THE INFORMATION REQUIRED TO BE INCLUDED IN THE YEARLY  REPORTS  PURSUANT
 TO  SECTION  TWO HUNDRED SIXTY-NINE-C OF THIS TITLE, AND ANY OTHER RELE-
 VANT OR HELPFUL INFORMATION RELATED TO THE REGISTRY AS DEEMED  NECESSARY
 BY THE ADVISORY COUNCIL.
   §  2.  This  act shall take effect on the thirtieth day after it shall
 have become a law.

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Senate Bill S7874

Sponsored By

Current Bill Status - In Assembly Committee

Jun 5, 2024 - Floor Vote

Floor Vote: Jun 5, 2024

May 28, 2024 - Rules Committee Vote

Rules Committee Vote: May 28, 2024

May 15, 2024 - Health Committee Vote

Health Committee Vote: May 15, 2024

co-Sponsors

2023-S7874 (ACTIVE) - Details

2023-S7874 (ACTIVE) - Summary

2023-S7874 (ACTIVE) - Sponsor Memo

2023-S7874 (ACTIVE) - Bill Text download pdf

Comments

Senate Bill S7874

Share this bill

Sponsored By

Michelle Hinchey

Current Bill Status - In Assembly Committee

co-Sponsors

Jeremy A. Cooney

Michael Gianaris

Kristen Gonzalez

2023-S7874 (ACTIVE) - Details

2023-S7874 (ACTIVE) - Summary

2023-S7874 (ACTIVE) - Sponsor Memo

2023-S7874 (ACTIVE) - Bill Text download pdf

Comments