senate Bill S190

2013-2014 Legislative Session

Establishes program for familial dysautonomia and Tay-Sachs disease screening; authorizes department of health to provide grants

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Archive: Last Bill Status - In Committee


  • Introduced
  • In Committee
  • On Floor Calendar
    • Passed Senate
    • Passed Assembly
  • Delivered to Governor
  • Signed/Vetoed by Governor

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Assembly Actions - Lowercase
Senate Actions - UPPERCASE
Jan 08, 2014 referred to health
Jan 09, 2013 referred to health

S190 - Bill Details

See Assembly Version of this Bill:
A314
Current Committee:
Senate Health
Law Section:
Public Health Law
Laws Affected:
Add Art 27-DDD ยงยง2770 - 2774-c, Pub Health L
Versions Introduced in Previous Legislative Sessions:
2011-2012: S738, A412
2009-2010: S7976, A1135

S190 - Bill Texts

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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; and provides that participation in such program shall be voluntary and all information shall be confidential.

view sponsor memo
BILL NUMBER:S190

TITLE OF BILL:

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

PURPOSE OR GENERAL IDEA OF THE BILL:

To provide for the establishment and operation of a state funded
voluntary familial dysautonomia, Canavan's disease, and Tay-Sachs
disease screening and counseling program, and to develop and
disseminate educational materials relating to these diseases. This
bill would permit the commissioner of health to make grants and enter
into contracts with public and nonprofit, private entities for
projects for the establishment and operation of this program.
Participation would be wholly voluntary, The program would be
established and operated primarily through existing health programs.
All tests, medical records and other information regarding screening
and counseling would be kept strictly confidential. Within one year
of enactment of this legislation, the commissioner will submit a
report to the governor and the legislature on the administration of
this article and on recommendations for additional legislation.

SUMMARY OF SPECIFIC PROVISIONS:

Section 1 of the bill adds a new article 27-DDD to the public health
law outlining the legislative intent functions and duties of the New
York State Commissioner of Health, costs, participation, application,
confidentiality information, and reporting.

Section 2 of the bill provides for an effective date.

JUSTIFICATION:

Familial dysautonomia, Canavan's disease, and Tay-Sachs disease are
fatal, inherited diseases whose victims rarely live past the age of
five. At present, there is no cure for the disease. The disease
occurs most often in children of Jewish extraction and of Eastern
European origin" One in every thirty Ashkenazi Jews (those of Eastern
European descent) is a carrier of the Tay-Sachs gene. Couples who are
both carriers, have a 25% chance of having a Tay-sachs child. The
estimated cost of caring for a Tay-Sachs child during their short
life is estimated to be $50,000 to $150,000. The emotional cost to
the family of a Tay-Sachs
child, is simply immeasurable. Simple and inexpensive tests have been
devised which identify those who are Tay-Sachs carriers. Voluntary,
confidential screening and counseling would be available under this
program. Clearly, New York State should establish Tay-Sachs disease
counseling and screening programs for its citizens as California did
in its October 1977 Tay-Sachs disease prevention month.

PRIOR LEGISLATIVE HISTORY:


2009-10: S.7976 (Squadron) Passed Senate, A.1135 (Dinowitz),
Passed Assembly
2007-08: A.3907 (Dinowitz) - Passed Assembly
2005-06: A.2461-A Passed Assembly/S.5660-A Referred to Health
2003-04: A.9262-A Passed Assembly

FISCAL IMPLICATIONS:

To be determined.

EFFECTIVE DATE:

The 180th day after it shall have become a law! with provisions.

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                    S T A T E   O F   N E W   Y O R K
________________________________________________________________________

                                   190

                       2013-2014 Regular Sessions

                            I N  S E N A T E

                               (PREFILED)

                             January 9, 2013
                               ___________

Introduced  by Sen. SQUADRON -- 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 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 article
27-DDD to read as follows:
                              ARTICLE  27-DDD
          PROGRAM FOR FAMILIAL DYSAUTONOMIA, CANAVAN'S DISEASE
             AND TAY-SACHS DISEASE SCREENING AND COUNSELING
SECTION 2770. LEGISLATIVE FINDINGS AND DECLARATION OF PURPOSE.
        2771. PROGRAM FOR FAMILIAL DYSAUTONOMIA, CANAVAN'S  DISEASE  AND
               TAY-SACHS DISEASE SCREENING AND COUNSELING.
        2772. COMMISSIONER; FUNCTIONS, POWERS AND DUTIES.
        2773. COSTS.
        2774. VOLUNTARY PARTICIPATION.
        2774-A. APPLICATION; ADMINISTRATION AS TO GRANTS AND CONTRACTS.
        2774-B. CONFIDENTIALITY OF INFORMATION.
        2774-C. REPORTS.
  S  2770.    LEGISLATIVE  FINDINGS AND DECLARATION OF PURPOSE.   1. THE
LEGISLATURE HEREBY FINDS AND DECLARES:
  (A)  THAT  FAMILIAL  DYSAUTONOMIA,  CANAVAN'S  DISEASE  AND  TAY-SACHS
DISEASE  ARE  DEBILITATING, INHERITABLE DISEASES THAT HAVE AFFECTED MANY
CITIZENS OF THE STATE;
  (B)  THAT  FAMILIAL  DYSAUTONOMIA,  CANAVAN'S  DISEASE  AND  TAY-SACHS
DISEASE  ARE  DEADLY  AND  TRAGIC  BURDENS  WHICH  ARE  LIKELY TO STRIKE
ONE-FOURTH OF THE CHILDREN BORN TO PARENTS BOTH  OF  WHOM  ARE  FAMILIAL
DYSAUTONOMIA, CANAVAN'S DISEASE AND TAY-SACHS DISEASE CARRIERS;

 EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                      [ ] is old law to be omitted.
                                                           LBD00266-01-3

S. 190                              2

  (C)    THAT  EFFORTS  WITH RESPECT TO FAMILIAL DYSAUTONOMIA, CANAVAN'S
DISEASE AND TAY-SACHS DISEASE MUST BE  DIRECTED  TOWARD  THE  EDUCATION,
SCREENING,   AND   COUNSELING  OF  CARRIERS  OF  FAMILIAL  DYSAUTONOMIA,
CANAVAN'S DISEASE AND TAY-SACHS DISEASE;
  (D)  THAT  SIMPLE  AND  INEXPENSIVE  SCREENING TESTS HAVE BEEN DEVISED
WHICH IDENTIFY THOSE WHO HAVE THE DISEASES OR ARE FAMILIAL DYSAUTONOMIA,
CANAVAN'S DISEASE AND TAY-SACHS DISEASE CARRIERS;
  (E) THAT PROGRAMS WITH RESPECT  TO  FAMILIAL  DYSAUTONOMIA,  CANAVAN'S
DISEASE  AND TAY-SACHS DISEASE MUST BE BASED ENTIRELY UPON THE VOLUNTARY
COOPERATION OF THE INDIVIDUALS INVOLVED;
  (F) THAT THE APPLICATION OF METHODS OF SCREENING AND  COUNSELING  WITH
RESPECT  TO  FAMILIAL  DYSAUTONOMIA,  CANAVAN'S  DISEASE  AND  TAY-SACHS
DISEASE DESERVE THE HIGHEST PRIORITY; AND
  (G) THAT THE ESTABLISHMENT OF FAMILIAL DYSAUTONOMIA, CANAVAN'S DISEASE
AND TAY-SACHS DISEASE EDUCATION, SCREENING, AND COUNSELING PROGRAMS WILL
BE COST BENEFICIAL TO THE CITIZENS OF THE STATE.
  2. IN ORDER TO PRESERVE AND PROTECT THE PUBLIC HEALTH AND WELFARE, THE
LEGISLATURE HEREBY DECLARES  AS  ITS  PURPOSE  THE  ESTABLISHMENT  OF  A
PROGRAM  FOR  FAMILIAL  DYSAUTONOMIA,  CANAVAN'S  DISEASE  AND TAY-SACHS
DISEASE SCREENING AND COUNSELING.
  S 2771. PROGRAM FOR FAMILIAL DYSAUTONOMIA, CANAVAN'S DISEASE AND  TAY-
SACHS  DISEASE  SCREENING AND COUNSELING.  THE COMMISSIONER SHALL ESTAB-
LISH  WITHIN  THE  DEPARTMENT  A  PROGRAM  FOR  FAMILIAL   DYSAUTONOMIA,
CANAVAN'S DISEASE AND TAY-SACHS DISEASE SCREENING AND COUNSELING FOR THE
PURPOSES OF:
  1. THE ESTABLISHMENT AND OPERATION OF VOLUNTARY FAMILIAL DYSAUTONOMIA,
CANAVAN'S   DISEASE  AND  TAY-SACHS  DISEASE  SCREENING  AND  COUNSELING
PROGRAMS, PRIMARILY THROUGH OTHER EXISTING HEALTH PROGRAMS; AND
  2. THE DEVELOPMENT OF INFORMATION AND EDUCATIONAL  MATERIALS  RELATING
TO  FAMILIAL  DYSAUTONOMIA, CANAVAN'S DISEASE AND TAY-SACHS DISEASE, AND
THE DISSEMINATION OF SUCH INFORMATION AND MATERIALS TO PERSONS PROVIDING
HEALTH CARE AND TO THE PUBLIC GENERALLY.
  S 2772. COMMISSIONER; FUNCTIONS, POWERS AND DUTIES.   IN CARRYING  OUT
THE  PROVISIONS OF THIS ARTICLE, THE COMMISSIONER SHALL HAVE THE FOLLOW-
ING FUNCTIONS, POWERS AND DUTIES:
  1. IN HIS OR  HER  DISCRETION,  TO  MAKE  GRANTS  TO  AND  ENTER  INTO
CONTRACTS  WITH,  PUBLIC AND NONPROFIT PRIVATE ENTITIES FOR PROJECTS FOR
THE ESTABLISHMENT AND  OPERATION  OF  VOLUNTARY  FAMILIAL  DYSAUTONOMIA,
CANAVAN'S   DISEASE  AND  TAY-SACHS  DISEASE  SCREENING  AND  COUNSELING
PROGRAMS;
  2. TO CARRY OUT A PROGRAM TO DEVELOP INFORMATION AND EDUCATIONAL MATE-
RIALS RELATING TO FAMILIAL DYSAUTONOMIA, CANAVAN'S DISEASE AND TAY-SACHS
DISEASE AND TO DISSEMINATE SUCH INFORMATION  AND  MATERIALS  TO  PERSONS
PROVIDING HEALTH CARE AND TO THE PUBLIC GENERALLY;
  3.  TO  MAKE  GRANTS  TO  PUBLIC AND NONPROFIT PRIVATE ENTITIES AND TO
ENTER INTO CONTRACTS WITH PUBLIC AND PRIVATE  ENTITIES  AND  INDIVIDUALS
FOR  THE  PURPOSE OF EFFECTUATING THE DUTY PRESCRIBED BY SUBDIVISION TWO
OF THIS SECTION;
  4. TO ADOPT, PROMULGATE, AMEND AND RESCIND SUITABLE  RULES  AND  REGU-
LATIONS TO CARRY OUT THE PROVISIONS AND PURPOSES OF THIS ARTICLE; AND
  5.  TO EXERCISE AND PERFORM SUCH OTHER FUNCTIONS, POWERS AND DUTIES AS
ARE CONTAINED IN THIS ARTICLE OR AS MAY FROM TIME TO TIME  BE  CONFERRED
OR IMPOSED BY LAW.
  S  2773.  COSTS. COSTS INCURRED BY THE COMMISSIONER IN MAKING PAYMENTS
PURSUANT TO GRANTS AND CONTRACTS  AUTHORIZED  BY  SUBDIVISIONS  ONE  AND
THREE  OF SECTION TWENTY-SEVEN HUNDRED SEVENTY-TWO OF THIS ARTICLE SHALL

S. 190                              3

BE PAYABLE, AFTER SUBMISSION OF A VOUCHER CERTIFIED BY THE COMMISSIONER,
UPON AUDIT AND WARRANT OF THE COMPTROLLER FROM MONEYS MADE AVAILABLE FOR
SUCH PURPOSE BY APPROPRIATION.
  S  2774.  VOLUNTARY PARTICIPATION. THE PARTICIPATION BY ANY INDIVIDUAL
IN ANY PROGRAM OR PORTION THEREOF ESTABLISHED UNDER THIS  ARTICLE  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.
  S  2774-A. APPLICATION; ADMINISTRATION AS TO GRANTS AND CONTRACTS.  1.
A GRANT AUTHORIZED BY SECTION TWENTY-SEVEN HUNDRED SEVENTY-TWO  OF  THIS
ARTICLE  MAY  BE MADE UPON APPLICATION TO THE COMMISSIONER AT SUCH TIME,
IN SUCH MANNER, UPON SUCH FORMS,  CONTAINING  AND  ACCOMPANIED  BY  SUCH
INFORMATION,  AS  THE  COMMISSIONER  SHALL  DEEM NECESSARY AND, BY REGU-
LATION, PRESCRIBE.
  2.  NOTWITHSTANDING THE PROVISIONS OF SUBDIVISION ONE OF THIS SECTION,
ANY APPLICATION MADE PURSUANT TO THIS SECTION SHALL AT LEAST PROVIDE:
  (A)  THAT THE PROGRAMS AND ACTIVITIES FOR WHICH ASSISTANCE UNDER  THIS
ARTICLE  IS  SOUGHT  WILL BE ADMINISTERED BY OR UNDER THE SUPERVISION OF
THE APPLICANT;
  (B)  FOR STRICT CONFIDENTIALITY OF ALL TEST RESULTS, MEDICAL  RECORDS,
AND  OTHER INFORMATION REGARDING SCREENING OR COUNSELING, EXCEPT FOR (I)
SUCH INFORMATION AS THE PATIENT (OR HIS OR HER GUARDIAN) CONSENTS TO  BE
RELEASED;  OR  (II)  STATISTICAL  DATA COMPILED WITHOUT REFERENCE TO THE
IDENTITY OF ANY SUCH PATIENT;
  (C) FOR APPROPRIATE COMMUNITY REPRESENTATION IN  THE  DEVELOPMENT  AND
OPERATION OF ANY PROGRAM FUNDED BY A GRANT UNDER THIS ARTICLE;
  (D)  IN  THE CASE OF AN APPLICATION FOR A GRANT AUTHORIZED BY SUBDIVI-
SION ONE OF SECTION TWENTY-SEVEN HUNDRED SEVENTY-TWO  OF  THIS  ARTICLE,
ASSURANCES  SATISFACTORY  TO THE COMMISSIONER THAT (I) THE SCREENING AND
COUNSELING SERVICES TO BE PROVIDED  UNDER  THE  PROGRAM  FOR  WHICH  THE
APPLICATION  IS  MADE  WILL  BE DIRECTED FIRST TO THE BLOOD RELATIVES OF
KNOWN FAMILIAL DYSAUTONOMIA,  CANAVAN'S  DISEASE  OR  TAY-SACHS  DISEASE
VICTIMS;  AND  SECOND, TO THE HIGH-RISK POPULATION GROUPS IN WHICH FAMI-
LIAL DYSAUTONOMIA, CANAVAN'S DISEASE AND TAY-SACHS DISEASE  OCCURS  WITH
GREATEST  FREQUENCY  AND ESPECIALLY TO THOSE PERSONS IN THESE GROUPS WHO
ARE ENTERING THEIR CHILDBEARING YEARS; AND (II) APPROPRIATE ARRANGEMENTS
HAVE BEEN MADE TO PROVIDE GENETIC COUNSELING  TO  PERSONS  FOUND  TO  BE
FAMILIAL DYSAUTONOMIA, CANAVAN'S DISEASE OR TAY-SACHS CARRIERS;
  (E)  FOR  SUCH  FISCAL  CONTROL  AND FUND ACCOUNTING PROCEDURES AS THE
COMMISSIONER MAY DEEM NECESSARY TO ASSURE  PROPER  DISBURSEMENT  OF  AND
ACCOUNTING FOR FUNDS PAID TO THE APPLICANT PURSUANT TO THIS ARTICLE; AND
  (F)  FOR MAKING SUCH REPORTS IN SUCH FORM AND CONTAINING SUCH INFORMA-
TION AS THE COMMISSIONER MAY, BY REGULATION, REASONABLY REQUIRE.
  3. IN MAKING OR ENTERING INTO ANY GRANT OR CONTRACT PURSUANT  TO  THIS
ARTICLE, THE COMMISSIONER SHALL:
  (A)  TAKE  INTO  ACCOUNT  THE  NUMBER  OF  PERSONS TO BE SERVED BY THE
PROGRAM SUPPORTED BY SUCH GRANT OR CONTRACT  AND  THE  EXTENT  TO  WHICH
RAPID  AND  EFFECTIVE  USE  WILL  BE  MADE  OF  FUNDS UNDER THE GRANT OR
CONTRACT; AND
  (B) GIVE PRIORITY TO PROGRAMS OPERATING IN AREAS WHICH THE COMMISSION-
ER DETERMINES TO HAVE THE GREATEST NUMBER OF  PERSONS  IN  NEED  OF  THE
SCREENING AND COUNSELING SERVICES PROVIDED UNDER SUCH PROGRAMS.
  S  2774-B.  CONFIDENTIALITY OF INFORMATION.  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 ARTI-

S. 190                              4

CLE 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
SECTION SHALL NOT APPLY TO:
  1.  SUCH  INFORMATION AS THE PATIENT, OR HIS OR HER GUARDIAN, CONSENTS
TO BE RELEASED; OR
  2. STATISTICAL DATA COMPILED WITHOUT REFERENCE TO THE IDENTITY OF  ANY
SUCH PATIENT; OR
  3.  SUCH  INFORMATION  AS  IS  RELEASED BY WRITTEN ORDER OF A COURT OF
RECORD, ISSUED BY SUCH COURT AFTER RECEIPT OF AN APPLICATION  ON  APPRO-
PRIATE  NOTICE  AND AN OPPORTUNITY FOR ALL RELEVANT PARTIES TO BE HEARD,
SHOWING GOOD CAUSE FOR THE FOLLOWING REASONS:
  (A) OTHER WAYS OF OBTAINING THE INFORMATION ARE NOT AVAILABLE OR WOULD
BE INEFFECTIVE; AND
  (B) 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 SUBDIVISION, 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.
  S 2774-C. REPORTS. 1. THE COMMISSIONER SHALL PREPARE AND SUBMIT TO THE
GOVERNOR AND THE LEGISLATURE AS SOON AS PRACTICABLE AFTER THE  ENACTMENT
OF  THIS ARTICLE, BUT NO LATER THAN ONE YEAR FOLLOWING SUCH ENACTMENT, A
COMPREHENSIVE REPORT ON THE ADMINISTRATION OF THIS ARTICLE.
  2. SUCH REPORT  SHALL  CONTAIN  SUCH  RECOMMENDATIONS  FOR  ADDITIONAL
LEGISLATION AS THE COMMISSIONER DEEMS NECESSARY.
  S 2. This act shall take effect on the one hundred eightieth day after
it shall have become a law, provided, however, that effective immediate-
ly,  the  addition,  amendment  and/or  repeal of any rule or regulation
necessary for the implementation of this act on its effective  date  are
authorized  and  directed  to  be  made  and completed on or before such
effective date.

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