S T A T E   O F   N E W   Y O R K
 ________________________________________________________________________
 
                                   2516
 
                        2025-2026 Regular Sessions
 
                           I N  A S S E M B L Y
 
                             January 17, 2025
                                ___________
 
 Introduced  by M. of A. DINOWITZ, ROSENTHAL, HEVESI, WEPRIN -- read once
   and referred to the Committee on Health
 
 AN ACT to amend the public health law, in relation to the  establishment
   of  a  program  for  familial dysautonomia, Canavan's disease and Tay-
   Sachs disease screening and counseling

   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 section
 206-c to read as follows:
   § 206-C. PROGRAM FOR  FAMILIAL  DYSAUTONOMIA,  CANAVAN'S  DISEASE  AND
 TAY-SACHS  DISEASE  SCREENING  AND COUNSELING. 1. THE COMMISSIONER SHALL
 ESTABLISH WITHIN THE DEPARTMENT, WITHIN AMOUNTS APPROPRIATED THEREFOR, A
 PROGRAM FOR  FAMILIAL  DYSAUTONOMIA,  CANAVAN'S  DISEASE  AND  TAY-SACHS
 DISEASE SCREENING AND COUNSELING FOR THE PURPOSES OF ESTABLISHING VOLUN-
 TARY  FAMILIAL  DYSAUTONOMIA,  CANAVAN'S  DISEASE  AND TAY-SACHS DISEASE
 SCREENING AND COUNSELING  PROGRAMS,  PRIMARILY  THROUGH  OTHER  EXISTING
 HEALTH PROGRAMS.
   2.  THE  COMMISSIONER MAY MAKE GRANTS TO AND ENTER INTO CONTRACTS WITH
 PUBLIC AND NONPROFIT PRIVATE ENTITIES FOR THE ESTABLISHMENT  AND  OPERA-
 TION  OF PROGRAMS UNDER THIS SECTION.  THE COMMISSIONER SHALL PROMULGATE
 REGULATIONS PURSUANT TO THIS SECTION. IN MAKING GRANTS AUTHORIZED  UNDER
 THIS SECTION THE COMMISSIONER SHALL GIVE PRIORITY TO PROGRAMS THAT:
   (A)    PROVIDE  SERVICES  FIRST  TO  BLOOD RELATIVES OF KNOWN FAMILIAL
 DYSAUTONOMIA, CANAVAN'S DISEASE OR TAY-SACHS DISEASE VICTIMS, AND SECOND
 TO HIGH-RISK POPULATION GROUPS IN WHICH FAMILIAL DYSAUTONOMIA, CANAVAN'S
 DISEASE AND TAY-SACHS DISEASE   OCCUR   WITH GREATEST   FREQUENCY    AND
 ESPECIALLY TO THOSE PERSONS IN SUCH GROUPS WHO ARE ENTERING THEIR CHILD-
 BEARING YEARS; AND
   (B)  OPERATE  IN  AREAS  WHICH THE COMMISSIONER DETERMINES TO HAVE THE
 GREATEST NUMBER OF  PERSONS  IN  NEED OF THE  SCREENING  AND  COUNSELING
 SERVICES PROVIDED UNDER SUCH PROGRAMS.
 
  EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                       [ ] is old law to be omitted.
                                                            LBD04449-01-5
              

 A. 2516                             2
 
   3.  THE  PARTICIPATION  BY  ANY  INDIVIDUAL  IN ANY PROGRAM UNDER THIS
 SECTION SHALL BE WHOLLY VOLUNTARY AND SHALL NOT  BE  A  PREREQUISITE  TO
 ELIGIBILITY FOR, OR RECEIPT OF, ANY OTHER SERVICE OR ASSISTANCE FROM, OR
 TO  PARTICIPATION  IN,  ANY  OTHER  PROGRAM.  ALL  TEST RESULTS, MEDICAL
 RECORDS  AND  ANY  OTHER  INFORMATION  REGARDING  FAMILIAL DYSAUTONOMIA,
 CANAVAN'S DISEASE AND TAY-SACHS DISEASE SCREENING OR COUNSELING ACQUIRED
 OR MADE BY A PUBLIC OR  PRIVATE  ENTITY  OR  AN  INDIVIDUAL  UNDER  THIS
 SECTION  SHALL  BE  KEPT  CONFIDENTIAL  AND  SHALL  NOT BE ADMISSIBLE AS
 EVIDENCE IN AN ACTION OR PROCEEDING IN ANY COURT  OR  BEFORE  ANY  OTHER
 TRIBUNAL,   BOARD,   AGENCY  OR  PERSON;  PROVIDED,  HOWEVER,  THAT  THE
 PROVISIONS OF THIS SUBDIVISION SHALL NOT APPLY TO:
   (A) SUCH INFORMATION AS THE PATIENT, OR THEIR GUARDIAN, CONSENTS TO BE
 RELEASED; OR
   (B) STATISTICAL DATA COMPILED WITHOUT REFERENCE TO THE IDENTITY OF ANY
 SUCH PATIENT; OR
   (C) SUCH INFORMATION AS IS RELEASED BY WRITTEN ORDER  OF  A  COURT  OF
 COMPETENT  JURISDICTION, ISSUED BY SUCH COURT AFTER RECEIPT OF AN APPLI-
 CATION ON APPROPRIATE NOTICE AND AN OPPORTUNITY FOR ALL RELEVANT PARTIES
 TO BE HEARD, SHOWING GOOD CAUSE FOR THE FOLLOWING REASONS:
   (I) OTHER WAYS OF OBTAINING THE INFORMATION ARE NOT AVAILABLE OR WOULD
 BE INEFFECTIVE; OR
   (II) THERE IS A REASONABLE LIKELIHOOD THAT THE RECORDS  WILL  DISCLOSE
 INFORMATION OF SUBSTANTIAL VALUE IN A CIVIL AND/OR CRIMINAL PROCEEDING.
   IN  ANY  APPLICATION  BROUGHT  UNDER  THIS PARAGRAPH, UNLESS THE COURT
 ORDERS ALL PAPERS FILED UNDER SEAL, THE SUBJECT OF THE RECORD  SHALL  BE
 IDENTIFIED  ONLY  BY FICTITIOUS NAME, AND THE APPLICATION AND RESPONDING
 PAPERS SHALL NOT CONTAIN OR OTHERWISE DISCLOSE THE SUBJECT'S IDENTITY OR
 OTHER CONFIDENTIAL INFORMATION.
   4. ON OR BEFORE JULY FIRST, TWO THOUSAND TWENTY-SEVEN, THE COMMISSION-
 ER SHALL ISSUE A REPORT ON THE ADMINISTRATION OF  THIS  PROGRAM  TO  THE
 GOVERNOR,  THE TEMPORARY PRESIDENT OF THE SENATE, THE MINORITY LEADER OF
 THE SENATE, THE SPEAKER OF THE ASSEMBLY, AND THE MINORITY LEADER OF  THE
 ASSEMBLY.  SUCH REPORT SHALL CONTAIN SUCH RECOMMENDATIONS FOR ADDITIONAL
 LEGISLATION AS THE COMMISSIONER DEEMS NECESSARY.
   § 2. Subdivision 1 of section 207 of the public health law is  amended
 by adding a new paragraph (t) to read as follows:
   (T)  FAMILIAL  DYSAUTONOMIA,  CANAVAN'S  DISEASE AND TAY-SACHS DISEASE
 EDUCATION, SCREENING, AND COUNSELING.
   § 3. This act shall take effect on the one hundred eightieth day after
 it shall have become a law. Effective immediately, the addition,  amend-
 ment and/or repeal of any rule or regulation necessary for the implemen-
 tation  of  this act on its effective date are authorized to be made and
 completed on or before such effective date.