S T A T E O F N E W Y O R K
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1813
2023-2024 Regular Sessions
I N A S S E M B L Y
January 23, 2023
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Introduced by M. of A. DINOWITZ, L. 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. 1. PROGRAM FOR FAMILIAL DYSAUTONOMIA, CANAVAN'S DISEASE AND
TAY-SACHS DISEASE SCREENING AND COUNSELING. 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.
LBD00858-01-3
A. 1813 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 HIS OR HER 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-FIVE, THE COMMISSIONER
SHALL ISSUE A REPORT ON THE ADMINISTRATION OF THIS PROGRAM TO THE GOVER-
NOR, 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 (r) to read as follows:
(R) 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.