Bill Text: NY A02609 | 2023-2024 | General Assembly | Introduced

NOTE: There are more recent revisions of this legislation. Read Latest Draft

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Bill Title: Directs the health equity council to advise the commissioner regarding sickle cell disease.

Spectrum: Slight Partisan Bill (Democrat 7-3)

Status: (Passed) 2023-12-08 - signed chap.684 [A02609 Detail]

Download: New_York-2023-A02609-Introduced.html

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                STATE OF NEW YORK
        ________________________________________________________________________

                                          2609

                               2023-2024 Regular Sessions

                   IN ASSEMBLY

                                    January 26, 2023
                                       ___________

        Introduced  by M. of A. HYNDMAN -- read once and referred to the Commit-
          tee on Health

        AN ACT to amend the public health law, in relation to creating the sick-
          le cell disease detection and education program

          The People of the State of New York, represented in Senate and  Assem-
        bly, do enact as follows:

     1    Section  1. Article 24 of the public health law is amended by adding a
     2  new title 1-C to read as follows:
     3                                  TITLE I-C
     4             SICKLE CELL DISEASE DETECTION AND EDUCATION PROGRAM
     5  Section 2415. Sickle  cell  disease  detection  and  education  program;
     6                  establishment.
     7          2416. Grants to approved organizations.
     8          2417. Grants to community-based organizations.
     9          2418. Annual report.
    10          2419. Advisory council.
    11    §  2415.  Sickle  cell disease detection and education program; estab-
    12  lishment. 1. There is hereby created within the  department  the  sickle
    13  cell  disease  detection and education program, hereafter referred to in
    14  this title as  the  "sickle  cell  disease  services  program"  or  "the
    15  program",  to  promote  screening  and detection of sickle cell disease,
    16  especially among unserved or underserved  populations;  to  educate  the
    17  public   regarding  sickle  cell  disease  and  the  benefits  of  early
    18  detection; and to provide counseling and referral services. For purposes
    19  of this title, "unserved or underserved populations" means people having
    20  inadequate access and financial resources to obtain sickle cell  disease
    21  screening  and  detection  services,  including  people  who lack health
    22  coverage or whose health coverage is inadequate or who cannot  meet  the
    23  financial   requirements  of  their  coverage  for  accessing  detection
    24  services.
    25    2. The program shall include:

         EXPLANATION--Matter in italics (underscored) is new; matter in brackets
                              [ ] is old law to be omitted.
                                                                   LBD05973-01-3
        A. 2609                             2

     1    (a)  establishment  of  a  statewide  public  education  and  outreach
     2  campaign  to  publicize  evidence  based  sickle cell disease screening,
     3  detection and education services.  The campaign shall include:   general
     4  community  education,  outreach  to  specific  underserved  populations,
     5  evidence  based  clinical sickle cell disease screening services, and an
     6  informational summary that shall include an explanation  of  the  impor-
     7  tance  of clinical examinations and what to expect during clinical exam-
     8  inations and sickle cell disease screening services;
     9    (b) provision of grants to approved organizations under sections twen-
    10  ty-four hundred sixteen and twenty-four hundred seventeen of this title;
    11    (c) compilation of data concerning the program  and  dissemination  of
    12  such data to the public; and
    13    (d) development of health care professional education programs includ-
    14  ing  the benefits of early detection of sickle cell disease and clinical
    15  examinations, the recommended frequency  of  clinical  examinations  and
    16  sickle  cell  disease  screening services, and professionally recognized
    17  best practices guidelines.
    18    § 2416. Grants to approved organizations. 1.  The  commissioner  shall
    19  make  grants  within  the amounts appropriated to approved organizations
    20  for the provision of services relating to the evidence  based  screening
    21  and  detection  of  sickle  cell  disease  as  part of this program. The
    22  services shall include but not be limited to:
    23    (a) promotion and provision of early detection of sickle cell disease,
    24  including  clinical  examinations  and  sickle  cell  disease  screening
    25  services;
    26    (b)  provision  of counseling and information on treatment options and
    27  referral for appropriate medical treatment;
    28    (c) dissemination of information to  unserved  and  underserved  popu-
    29  lations, to the general public and to health care professionals concern-
    30  ing  sickle cell disease, the benefits of early detection and treatment,
    31  and the availability of sickle cell disease screening services;
    32    (d) identification of local sickle  cell  disease  screening  services
    33  within the approved organization's region;
    34    (e)  provision  of  information,  counseling  and referral services to
    35  individuals diagnosed with sickle cell disease; and
    36    (f) provision of information regarding  the  availability  of  medical
    37  assistance,  including  medical assistance under title eleven of article
    38  five of the social services law, to an individual who requires treatment
    39  for sickle cell disease.
    40    2. The commissioner shall  give  notice  and  provide  opportunity  to
    41  submit applications for grants under the program. In order to be consid-
    42  ered  for  a  grant,  an  applicant must show evidence of the following,
    43  relating to the services the applicant proposes to provide:
    44    (a) ability to provide and to ensure consistent and  quality  services
    45  under the program;
    46    (b) expertise in providing the service;
    47    (c)  capacity  to  coordinate  services with physicians, hospitals and
    48  other appropriate local institutions or agencies;
    49    (d) ability to provide the service to unserved  or  underserved  popu-
    50  lations; and
    51    (e)  ability  to  provide the service in accordance with the standards
    52  specified in subdivision three of this section.
    53    Applications shall be made on forms provided by the commissioner.
    54    3. The commissioner shall develop standards for the implementation  of
    55  grants  under  the program by approved organizations, which shall ensure
    56  the following:
        A. 2609                             3

     1    (a) integration of the approved organization with existing health care
     2  providers;
     3    (b) maximizing third party reimbursement;
     4    (c) provision of services to unserved or underserved populations.
     5    4.  Within  the amounts of state or federal funds appropriated for the
     6  program, approved organizations may be authorized by the  department  to
     7  provide such services for populations served under this title.  Services
     8  may  include  evidence  based  screening, patient education, counseling,
     9  follow-up and referral.
    10    § 2417. Grants to community-based organizations. 1.  The  commissioner
    11  shall make grants within amounts appropriated for community-based organ-
    12  izations  to  provide  post diagnosis counseling, education and outreach
    13  programs for persons diagnosed  with  sickle  cell  disease  based  upon
    14  criteria to be developed by the commissioner.
    15    2.  For  the purposes of this section, "community-based organizations"
    16  shall mean free-standing organizations  in  which  sickle  cell  disease
    17  survivors  hold  significant  decision-making  responsibility, and which
    18  offer a broad  range  of  sickle  cell  disease  education  and  support
    19  services free of charge.
    20    3.  The commissioner shall provide notice and opportunity for communi-
    21  ty-based organizations to submit applications to provide  post-diagnosis
    22  sickle  cell  disease  counseling, education and outreach programs. Such
    23  applications shall be on forms established by the commissioner.
    24    4. Every organization receiving grants under this title  shall  submit
    25  to  the  commissioner, on or before October first of each year, a report
    26  of such organization's activities, including an assessment of the organ-
    27  ization's programs and such data as the commissioner deems relevant  and
    28  necessary to accomplish the purposes of the program.
    29    §  2418.  Annual  report.  The  commissioner shall submit on or before
    30  December first of each year, an annual report to the  governor  and  the
    31  legislature  concerning  the operation of the program. The reports shall
    32  include the experience of the program in providing services  under  this
    33  title.  The annual report shall include strategies for implementation of
    34  the sickle cell disease awareness program and for promoting  the  aware-
    35  ness  program  to the general public, state and local elected officials,
    36  and various public and private organizations, associations,  businesses,
    37  industries,  and  agencies.  Organizations  receiving  grants under this
    38  title shall provide data and assessments as the commissioner may require
    39  for the report. The report shall include any recommendations  for  addi-
    40  tional action to respond to the incidence of sickle cell disease in this
    41  state.
    42    §  2419.  Advisory  council.  1.  There  is  hereby established in the
    43  department the sickle cell disease detection and education program advi-
    44  sory council, for the purpose of advising the commissioner  with  regard
    45  to the program.
    46    2.  The  advisory council shall advise and make recommendations to the
    47  commissioner regarding the  promotion  and  implementation  of  programs
    48  under this title.
    49    3.  The  commissioner  shall  appoint twenty-one voting members of the
    50  advisory council, which shall  include  representation  of  health  care
    51  professionals,  consumers, patients, with one voting member who shall be
    52  a person who has or has had sickle cell disease. The commissioner  shall
    53  appoint  one  member  as a chairperson. The members of the council shall
    54  receive no compensation for their services, but shall be  allowed  their
    55  actual and necessary expenses incurred in performance of their duties.
        A. 2609                             4

     1    4.  A  majority  of the appointed voting membership of the board shall
     2  constitute a quorum.
     3    5.  The  advisory  council  shall  meet  at least twice a year, at the
     4  request of the department.
     5    § 2. Subdivision 1 of section 207 of the public health law is  amended
     6  by adding a new paragraph (r) to read as follows:
     7    (r)  Sickle cell  disease  including  but  not  limited  to screening,
     8  prevention,  and  treatment  information.  The  program shall include an
     9  advisory council under this section that  shall  include  patients  with
    10  sickle  cell  disease  and  their  families  and  health  care providers
    11  specializing in treating sickle cell disease, among others.
    12    § 3. This act shall take effect immediately.