New York A 2516: Establishes program for familial dysautonomia, Canavan's and Tay-Sachs disease screening; authorizes department of health to provide grants

Bill Text

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A02516 Summary:

BILL NOA02516 

&nbsp

SAME ASSAME AS S07857

&nbsp

SPONSORDinowitz

&nbsp

COSPNSRRosenthal, Hevesi, Weprin

&nbsp

MLTSPNSR

&nbsp

Add §206-c, amd §207, Pub Health L

&nbsp

Authorizes the department of health to establish a program for familial dysautonomia, Canavan's and Tay-Sachs disease screening and counseling and to provide grants and to enter into contracts with public and non-profit private entities to assist in such program; provides that participation in such program shall be voluntary and all information shall be confidential.

Go to top A02516 Actions:

BILL NOA02516 

&nbsp

01/17/2025referred to health

04/28/2025reported referred to ways and means

01/07/2026referred to ways and means

Go to topA02516 Committee&nbspVotes:

Committee:HEALTH Chair:Paulin 
DATE:04/28/2025AYE/NAY:25/0 Action: Favorable refer to committee Ways and Means PaulinAyeJensenAye

DinowitzAyeGandolfoAye

RosenthalAyeBlumencranzAye

HevesiAyeGrayAye

SteckAyeMaherAye

BraunsteinAyeSlaterAye

SolagesAyeChludzinskiAye

Bichotte HermelAyeNorberAye

SayeghAye

McDonaldAye

ReyesAye

Gonzalez-RojasAye

RajkumarAye

ForrestAye

KellesAye

LucasAbsent

MeeksAye

LunsfordAye

Go to topA02516 Floor&nbspVotes:

There are no Assembly votes for this bill in this legislative session.

Go to topA02516 Text:

 STATE OF NEW YORK
 ________________________________________________________________________

 2516

 2025-2026 Regular Sessions

 IN ASSEMBLY

 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:

 1 Section 1. The public health law is amended by adding a new section
 2 206-c to read as follows:
 3 § 206-c. Program for familial dysautonomia, Canavan's disease and
 4 Tay-Sachs disease screening and counseling. 1. The commissioner shall
 5 establish within the department, within amounts appropriated therefor, a
 6 program for familial dysautonomia, Canavan's disease and Tay-Sachs
 7 disease screening and counseling for the purposes of establishing volun-
 8 tary familial dysautonomia, Canavan's disease and Tay-Sachs disease
 9 screening and counseling programs, primarily through other existing
 10 health programs.
 11 2. The commissioner may make grants to and enter into contracts with
 12 public and nonprofit private entities for the establishment and opera-
 13 tion of programs under this section. The commissioner shall promulgate
 14 regulations pursuant to this section. In making grants authorized under
 15 this section the commissioner shall give priority to programs that:
 16 (a) provide services first to blood relatives of known familial
 17 dysautonomia, Canavan's disease or Tay-Sachs disease victims, and second
 18 to high-risk population groups in which familial dysautonomia, Canavan's
 19 disease and Tay-Sachs disease occur with greatest frequency and
 20 especially to those persons in such groups who are entering their child-
 21 bearing years; and
 22 (b) operate in areas which the commissioner determines to have the
 23 greatest number of persons in need of the screening and counseling
 24 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

 1 3. The participation by any individual in any program under this
 2 section shall be wholly voluntary and shall not be a prerequisite to
 3 eligibility for, or receipt of, any other service or assistance from, or
 4 to participation in, any other program. All test results, medical
 5 records and any other information regarding familial dysautonomia,
 6 Canavan's disease and Tay-Sachs disease screening or counseling acquired
 7 or made by a public or private entity or an individual under this
 8 section shall be kept confidential and shall not be admissible as
 9 evidence in an action or proceeding in any court or before any other
 10 tribunal, board, agency or person; provided, however, that the
 11 provisions of this subdivisio