Bill Text: NY S04497 | 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 5-1)

Status: (Introduced) 2019-06-04 - SUBSTITUTED BY A5762 [S04497 Detail]

Download: New_York-2019-S04497-Introduced.html

                STATE OF NEW YORK
                               2019-2020 Regular Sessions
                    IN SENATE
                                     March 13, 2019
        Introduced  by  Sen.  RIVERA -- 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  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
    25  represent  a  hospital  in  which  the  scope of service focuses on rare
         EXPLANATION--Matter in italics (underscored) is new; matter in brackets
                              [ ] is old law to be omitted.

        S. 4497                             2
     1  diseases of pediatric patients; three persons age eighteen or older  who
     2  either  have  a  rare disease or are a caregiver of a person with a rare
     3  disease; two representatives of a rare disease patient organization that
     4  operates in the state; one pharmacist with experience with drugs used to
     5  treat  rare  diseases; one representative of the biotechnology industry;
     6  one representative of health insurance  companies;  one  member  of  the
     7  scientific  community  who  is engaged in rare disease research; and one
     8  genetic counselor with experience providing services  to  persons  diag-
     9  nosed with a rare disease or caregivers of those persons.
    10    3.  Members of the advisory council shall serve at the pleasure of the
    11  appointing authority. Vacancies on the advisory council shall be  filled
    12  in  the same manner as the original appointment. Members of the advisory
    13  council shall receive no compensation for their  services,  but  may  be
    14  reimbursed for necessary and actual expenses incurred in the performance
    15  of their duties hereunder.
    16    4. The advisory council shall meet at least three times in each calen-
    17  dar year. The council shall meet at the request of its chairs.
    18    5. The advisory council's duties may include, but are not limited to:
    19    a.  Convening  public  hearings, and receiving and considering reports
    20  and testimony from individuals, the department, health  care  providers,
    21  and  public  or  private organizations recognized as having expertise in
    22  rare diseases, as well as other interested parties, to assist the  coun-
    23  cil in developing recommendations under this section;
    24    b. Studying the economic burden of the treatment of rare diseases with
    25  regard to quality of care, health care coverage, and access to treatment
    26  and services;
    27    c.  Developing  recommendations pertaining to the impact of particular
    28  health care coverage and  the  impact  of  particular  coverage  on  the
    29  provision of treatment and care services;
    30    d.  Identifying  best  practices  for rare diseases that could improve
    31  treatment of rare diseases in New York state; and
    32    e. Developing a list of existing,  publicly  accessible  resources  on
    33  research, diagnosis, treatment, coverage options, and education relating
    34  to  rare  diseases, which shall be published on the department's website
    35  upon completion.
    36    6. The council shall prepare and submit a written report no later than
    37  October first, two thousand twenty, and biennially  thereafter,  to  the
    38  governor, speaker of the assembly, and temporary president of the senate
    39  that  sets  forth  the  findings  and  recommendations of the council on
    40  matters within the scope of its duties as set forth in this section.
    41    § 2. This act shall take effect immediately.