S T A T E   O F   N E W   Y O R K
 ________________________________________________________________________
 
                                   8243
 
                        2025-2026 Regular Sessions
 
                           I N  A S S E M B L Y
 
                                May 5, 2025
                                ___________
 
 Introduced by M. of A. PAULIN -- read once and referred 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
              

 A. 8243                             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.