Bill Text: NY A05762 | 2019-2020 | General Assembly | Introduced

Bill Title: Establishes the rare disease advisory council; advise and consult on policy matters relating to rare disease; twenty-one appointed members.

Spectrum: Moderate Partisan Bill (Democrat 16-5)

Status: (Introduced) 2019-05-16 - advanced to third reading cal.350 [A05762 Detail]

Download: New_York-2019-A05762-Introduced.html

                STATE OF NEW YORK
                               2019-2020 Regular Sessions
                   IN ASSEMBLY
                                    February 19, 2019
        Introduced  by  M.  of  A.  PAULIN,  SAYEGH, ENGLEBRIGHT, GRIFFIN, FAHY,
          referred to the Committee on Health
        AN  ACT  to amend the public health law, in relation 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.  The  public health law is amended by adding a new article
     2  27-L to read as follows:
     3                                ARTICLE 27-L
     4                        RARE DISEASE ADVISORY COUNCIL
     5  Section 2799-u. Rare disease advisory council.
     6    § 2799-u. Rare disease advisory council. 1. There shall be established
     7  within the department a rare disease  advisory  council  to  advise  and
     8  consult  on policy matters relating to rare disease. For the purposes of
     9  this section, rare disease shall mean  any  disease  or  condition  that
    10  affects less than 200,000 people in the United States.
    11    2.  The council shall be composed of twenty-one members consisting of:
    12  seventeen members shall be appointed by the governor, two members  shall
    13  be  appointed  by  the speaker of the assembly, and two members shall be
    14  appointed by the temporary president of the senate. The  governor  shall
    15  designate  the  commissioner,  or  his  or her designee, as chair of the
    16  council, and the superintendent of the department of financial services,
    17  or his or her designee, as co-chair of the council. The council shall at
    18  all times include in  its  membership  the  following,  which  shall  be
    19  appointed by the governor: two physicians licensed and practicing in the
    20  state   with   experience  researching,  diagnosing,  or  treating  rare
    21  diseases; one registered nurse or  advanced  practice  registered  nurse
    22  licensed  and  practicing  in  the  state  with experience treating rare
    23  diseases; two hospital administrators from hospitals in the  state  that
    24  provide  care to persons diagnosed with a rare disease, one of whom must
         EXPLANATION--Matter in italics (underscored) is new; matter in brackets
                              [ ] is old law to be omitted.

        A. 5762                             2
     1  represent a hospital in which the  scope  of  service  focuses  on  rare
     2  diseases  of pediatric patients; three persons age eighteen or older who
     3  either have a rare disease or are a caregiver of a person  with  a  rare
     4  disease; two representatives of a rare disease patient organization that
     5  operates in the state; one pharmacist with experience with drugs used to
     6  treat  rare  diseases; one representative of the biotechnology industry;
     7  one representative of health insurance  companies;  one  member  of  the
     8  scientific  community  who  is engaged in rare disease research; and one
     9  genetic counselor with experience providing services  to  persons  diag-
    10  nosed with a rare disease or caregivers of those persons.
    11    3.  Members of the advisory council shall serve at the pleasure of the
    12  appointing authority. Vacancies on the advisory council shall be  filled
    13  in  the same manner as the original appointment. Members of the advisory
    14  council shall receive no compensation for their  services,  but  may  be
    15  reimbursed for necessary and actual expenses incurred in the performance
    16  of their duties hereunder.
    17    4. The advisory council shall meet at least three times in each calen-
    18  dar year. The council shall meet at the request of its chairs.
    19    5. The advisory council's duties may include, but are not limited to:
    20    a.  Convening  public  hearings, and receiving and considering reports
    21  and testimony from individuals, the department, health  care  providers,
    22  and  public  or  private organizations recognized as having expertise in
    23  rare diseases, as well as other interested parties, to assist the  coun-
    24  cil in developing recommendations under this section;
    25    b. Studying the economic burden of the treatment of rare diseases with
    26  regard to quality of care, health care coverage, and access to treatment
    27  and services;
    28    c.  Developing  recommendations pertaining to the impact of particular
    29  health care coverage and  the  impact  of  particular  coverage  on  the
    30  provision of treatment and care services;
    31    d.  Identifying  best  practices  for rare diseases that could improve
    32  treatment of rare diseases in New York state; and
    33    e. Developing a list of existing,  publicly  accessible  resources  on
    34  research, diagnosis, treatment, coverage options, and education relating
    35  to  rare  diseases, which shall be published on the department's website
    36  upon completion.
    37    6. The council shall prepare and submit a written report no later than
    38  October first, two thousand twenty, and biennially  thereafter,  to  the
    39  governor, speaker of the assembly, and temporary president of the senate
    40  that  sets  forth  the  findings  and  recommendations of the council on
    41  matters within the scope of its duties as set forth in this section.
    42    § 2. This act shall take effect immediately.