A09132 Summary:

BILL NOA09132
 
SAME ASSAME AS S07172
 
SPONSORPaulin
 
COSPNSR
 
MLTSPNSR
 
Rpld Art 27-L, Pub Health L (as proposed in S.4497 & A.5762)
 
Directs the department of health to convene a workgroup on rare diseases.
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A09132 Actions:

BILL NOA09132
 
01/22/2020referred to health
01/28/2020reported
01/30/2020advanced to third reading cal.385
02/05/2020substituted by s7172
 S07172 AMEND= RIVERA
 01/10/2020REFERRED TO RULES
 01/13/2020ORDERED TO THIRD READING CAL.96
 01/27/2020PASSED SENATE
 01/27/2020DELIVERED TO ASSEMBLY
 01/27/2020referred to health
 02/05/2020substituted for a9132
 02/05/2020ordered to third reading cal.385
 02/05/2020passed assembly
 02/05/2020returned to senate
 04/17/2020DELIVERED TO GOVERNOR
 04/17/2020SIGNED CHAP.74
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A09132 Committee Votes:

HEALTH Chair:Gottfried DATE:01/28/2020AYE/NAY:24/0 Action: Favorable
GottfriedAyeByrneAye
SchimmingerExcusedMcDonoughAye
GalefAyeGarbarinoAye
DinowitzAyeByrnesAye
CahillAyeAshbyAye
PaulinExcusedMillerAye
CymbrowitzAyeSalkaAye
GuntherAye
RosenthalAye
HevesiAye
JaffeeAye
SteckAye
AbinantiAye
BraunsteinAye
KimAye
SolagesAye
BichotteAye
BarronAye
SayeghAye

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A09132 Floor Votes:

There are no votes for this bill in this legislative session.
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A09132 Memo:

NEW YORK STATE ASSEMBLY
MEMORANDUM IN SUPPORT OF LEGISLATION
submitted in accordance with Assembly Rule III, Sec 1(f)
 
BILL NUMBER: A9132
 
SPONSOR: Paulin
  TITLE OF BILL: An act to direct the department of health to convene a work group on rare diseases and providing for the repeal of such provisions upon the expiration thereof; and to repeal article 27-L of the public health law relating to establishing the rare disease advisory council   PURPOSE OR GENERAL IDEA OF BILL: The purpose of this bill is to establish a work group to examine rare diseases to improve education and treatment in order to advance the goals of Chapter 719 of the Laws of 2019.   SUMMARY OF SPECIFIC PROVISIONS: Section 1 of the bill makes technical amendments necessary to accomplish the goals of the bill. Section 2 would direct the Department of Health in consultation with the Department of Financial Services to convene a work group of individuals with expertise in rare diseases. The work group would work to identify best practices to improve awareness and referral of those that may have rare diseases as well evaluating potential barriers to treatment. The work group would produce a report on their findings which will be submitted to the Governor and the Legislature. Section 3 would establish an effective date the same as Chapter 719 of the Laws of 2019.   JUSTIFICATION: Chapter 719 of the Laws of 2019 established an advisory council on rare diseases. This bill replaces the language with the creation of a work group created of experts in the field of rare diseases. These individ- uals will be tasked with examining how rare diseases are handled and treated in New York and will produce a report on their findings to help shape policy initiatives to improve the lives of New Yorkers suffering from rare diseases.   PRIOR LEGISLATIVE HISTORY: New Legislation.   FISCAL IMPLICATIONS: None noted.   EFFECTIVE DATE: This act shall take effect on the same date and in the same manner as a chapter of the laws of 2019, amending the public health law relating to establishing the rare disease advisory council, as proposed in legisla- tive bills numbers S. 4497 and A. 5762; provided, however, that the provisions of section two of this act shall expire and be deemed repealed two years after such effective date.
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A09132 Text:



 
                STATE OF NEW YORK
        ________________________________________________________________________
 
                                          9132
 
                   IN ASSEMBLY
 
                                    January 22, 2020
                                       ___________
 
        Introduced by M. of A. PAULIN -- read once and referred to the Committee
          on Health
 
        AN  ACT  to  direct  the department of health to convene a work group on
          rare diseases and providing for the repeal of such provisions upon the
          expiration thereof; and to repeal article 27-L of  the  public  health
          law relating to establishing the rare disease advisory council

          The  People of the State of New York, represented in Senate and Assem-
        bly, do enact as follows:
 
     1    Section 1. Article 27-L of the public health law, as added by a  chap-
     2  ter  of  the  laws  of  2019  amending the public health law relating to
     3  establishing the rare disease advisory council, as proposed in  legisla-
     4  tive bills numbers S. 4497 and A. 5762, is REPEALED.
     5    § 2. The department of health, in collaboration with the department of
     6  financial services, shall convene a workgroup of individuals with exper-
     7  tise  in  rare  diseases,  including physicians, nurses and other health
     8  care professionals with experience researching, diagnosing  or  treating
     9  rare  diseases;  members  of  the  scientific  community engaged in rare
    10  disease research; representatives from the  health  insurance  industry;
    11  individuals  who  have  a  rare disease or caregivers of a person with a
    12  rare disease; and representatives of rare disease patient organizations.
    13  The workgroup's focus shall include, but not be limited to:  identifying
    14  best  practices  that  could  improve the awareness of rare diseases and
    15  referral of people with potential rare diseases to specialists and eval-
    16  uating barriers to treatment, including financial barriers on access  to
    17  care.  The department of health shall prepare a written report summariz-
    18  ing opinions and recommendations from the  workgroup  which  includes  a
    19  list  of existing, publicly accessible resources on research, diagnosis,
    20  treatment, coverage options and education  relating  to  rare  diseases.
    21  This  report shall be submitted to the governor, speaker of the assembly
    22  and temporary president of the senate no later than two years  following
    23  the  effective date of this act and shall be posted on the department of
    24  health's website.
    25    § 3. This act shall take effect on the  same  date  and  in  the  same
    26  manner  as a chapter of the laws of 2019, amending the public health law
 
         EXPLANATION--Matter in italics (underscored) is new; matter in brackets
                              [ ] is old law to be omitted.
                                                                   LBD07491-02-0

        A. 9132                             2
 
     1  relating to establishing the rare disease advisory council, as  proposed
     2  in  legislative  bills  numbers  S. 4497 and A. 5762; provided, however,
     3  that the provisions of section two of  this  act  shall  expire  and  be
     4  deemed repealed two years after such effective date.
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