Bill Text: NY A09132 | 2019-2020 | General Assembly | Introduced

New York Assembly Bill 9132 (Prior Session Legislation)

Introduced

Bill Title: Directs the department of health to convene a workgroup on rare diseases.

Spectrum: Partisan Bill (Democrat 1-0)

Status: (Passed) 2020-04-17 - SIGNED CHAP.74 [A09132 Detail]

Download: New_York-2019-A09132-Introduced.html




                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     4  tive bills numbers S. 4497 and A. 5762, is REPEALED.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.