New York State Assembly

 
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A07845 Summary:

A07845 Actions:

A07845 Committee Votes:

Committee:HEALTH   Chair:Paulin      
DATE:05/19/2025AYE/NAY:24/0  Action: Favorable refer to committee Codes        
Paulin
Aye
Jensen
Aye
Dinowitz
Aye
Gandolfo
Aye
Rosenthal
Aye
Blumencranz
Aye
Hevesi
Aye
Gray
Aye
Steck
Aye
Maher
Aye
Braunstein
Aye
Slater
Aye
Solages
Aye
Chludzinski
Aye
Bichotte Hermel
Excused
Norber
Aye
Sayegh
Aye
McDonald
Aye
Reyes
Aye
Gonzalez-Rojas
Aye
Rajkumar
Aye
Forrest
Aye
Kelles
Aye
Lucas
Absent
Lavine
Aye
Lunsford
Aye

Committee:CODES   Chair:Dinowitz      
DATE:05/28/2025AYE/NAY:21/0  Action: Favorable refer to committee Ways and Means        
Dinowitz
Aye
Morinello
Aye
Cook
Aye
Reilly
Aye
Simon
Aye
Mikulin
Aye
Weprin
Aye
Tannousis
Aye
Hevesi
Aye
Angelino
Aye
Seawright
Aye
Molitor
Aye
Rosenthal
Aye
Walker
Aye
Vanel
Aye
Cruz
Aye
Epstein
Aye
Bores
Aye
Reyes
Aye
Cunningham
Absent
Romero
Aye
Alvarez
Aye

Committee:WAYS AND MEANS   Chair:Pretlow      
DATE:05/29/2025AYE/NAY:34/0  Action: Favorable refer to committee Rules        
Pretlow
Aye
Ra
Aye
Glick
Aye
Fitzpatrick
Aye
Colton
Aye
Hawley
Aye
Cook
Aye
Blankenbush
Aye
Benedetto
Aye
Palmesano
Aye
Weprin
Aye
Walsh
Aye
Ramos
Aye
DeStefano
Aye
Braunstein
Aye
Manktelow
Aye
McDonald
Aye
Smullen
Aye
Rozic
Aye
Giglio
Aye
Dinowitz
Aye
Magnarelli
Aye
Bronson
Aye
Dilan
Aye
Seawright
Excused
Hyndman
Aye
Walker
Aye
Bichotte Hermel
Aye
Simon
Aye
Cruz
Aye
Otis
Aye
Solages
Aye
Hunter
Aye
Epstein
Aye
Septimo
Aye

Committee:RULES   Chair:Pretlow      
DATE:06/06/2025AYE/NAY:27/0  Action: Favorable         
Heastie
Excused
Barclay
Aye
Pretlow
Aye
Hawley
Aye
Cook
Aye
Blankenbush
Aye
Glick
Excused
Ra
Aye
Dinowitz
Aye
Brabenec
Aye
Colton
Aye
Palmesano
Aye
Magnarelli
Excused
Reilly
Aye
Paulin
Aye
Smith
Excused
Peoples-Stokes
Aye
Jensen
Aye
Benedetto
Aye
Lavine
Aye
Lupardo
Aye
Braunstein
Aye
Davila
Aye
Hyndman
Aye
Rozic
Aye
Bronson
Aye
Hevesi
Aye
Hunter
Aye
Taylor
Aye
Cruz
Aye
Vanel
Aye

A07845 Floor Votes:

A07845 Text:

 
                STATE OF NEW YORK
        ________________________________________________________________________
 
                                          7845
 
                               2025-2026 Regular Sessions
 
                   IN ASSEMBLY
 
                                     April 11, 2025
                                       ___________
 
        Introduced  by M. of A. STERN -- read once and referred to the Committee
          on Health
 
        AN ACT to amend the public health law, in  relation  to  establishing  a
          state  amyotrophic  lateral  sclerosis  (ALS) and motor neuron disease
          (MND) registry
 
          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  20-C to read as follows:
 
     3                                ARTICLE 20-C
     4        STATE AMYOTROPHIC LATERAL SCLEROSIS AND MOTOR NEURON DISEASE
     5                                  REGISTRY
 
     6  Section 2020. Definitions.
     7          2021. Duty to report.
     8          2022. Establishment of registry.
     9          2023. Duties of the department.
    10          2024. Duties of the commissioner.
    11    § 2020. Definitions. As used in  this  article,  the  following  terms
    12  shall have the following meanings:
    13    1.  "ALS" means amyotrophic lateral sclerosis, a neurological disorder
    14  that affects motor neurons, the nerve cells in the brain and spinal cord
    15  that control voluntary muscle movement and breathing.
    16    2. "MND" means motor neuron disease, a group of progressive neurologi-
    17  cal disorders that destroy motor neurons, the cells that control  skele-
    18  tal  muscle  activity such as walking, breathing, speaking, and swallow-
    19  ing.    This  group  includes  diseases  such  as  amyotrophic   lateral
    20  sclerosis, progressive bulbar palsy, primary lateral sclerosis, progres-
    21  sive  muscular  atrophy, spinal muscular atrophy, Kennedy's disease, and
    22  post-polio syndrome.
 
         EXPLANATION--Matter in italics (underscored) is new; matter in brackets
                              [ ] is old law to be omitted.
                                                                   LBD10901-01-5
        A. 7845                             2
 
     1    § 2021. Duty to report. 1. Every physician, nurse practitioner, physi-
     2  cian assistant and general hospital that  diagnoses  or  is  treating  a
     3  patient  diagnosed  with  ALS or MND shall give notice no later than one
     4  hundred eighty days of each case of ALS or MND coming under their  care,
     5  to  the  department,  in  a format to be determined by the commissioner,
     6  except as otherwise provided in this article.
     7    2. All patients diagnosed with ALS or MND shall be provided with writ-
     8  ten and verbal  notice  regarding  the  collection  of  information  and
     9  patient  data on ALS and MND. Patients who do not wish to participate in
    10  the collection of data shall affirmatively  opt  out  in  writing  after
    11  ample  opportunity  to  review such notice, provided that the mere inci-
    12  dence of a patient with ALS or MND shall be the sole  required  informa-
    13  tion  for  the  registry  under  section two thousand twenty-two of this
    14  article for any patient who chooses not to participate.
    15    § 2022. Establishment of registry. 1. The department  shall  establish
    16  an  ALS  and MND registry for the collection of information on the inci-
    17  dence and prevalence of ALS and MND. The department may consult with ALS
    18  and MND experts, including neurologists, patients living  with  ALS  and
    19  MND, and ALS and MND researchers to assist in the development and imple-
    20  mentation  of  such  registry,  and  to  determine  what  data  shall be
    21  collected.
    22    2. All information maintained by the department under  the  provisions
    23  of  this  section shall be confidential except as necessary to carry out
    24  the provisions of this section and shall not be released for  any  other
    25  purpose.
    26    3.  The  department  may  enter  into  an  agreement  to  provide data
    27  collected in the ALS and MND registry to the federal centers for disease
    28  control and prevention, or successor agency, to local  health  officers,
    29  or health researchers for the study of ALS and MND for public health and
    30  research  purposes.  Data  shall  be  provided  in summary, statistical,
    31  aggregate, or other form such that no individual person can  be  identi-
    32  fied.
    33    4.  On or before January first, two thousand twenty-seven, the depart-
    34  ment shall create and maintain a public website  called  the  "New  York
    35  state  ALS  and  MN Disease registry" which shall include information on
    36  the incidence and prevalence of ALS and MND in the state by county,  and
    37  demographic information on affected patients.
    38    §  2023.  Duties  of  the  department. 1. ALS and MND reports and data
    39  shall be maintained by the department in a manner suitable for  research
    40  purposes  and  shall be made available to people as set forth in section
    41  two thousand twenty-two of this article.
    42    2. All information collection under this article shall be confidential
    43  insofar as the identity of individual patients is concerned and shall be
    44  used solely for the purposes as provided in this article. Access to such
    45  information shall be limited to authorized employees of  the  department
    46  as  well as persons and organizations identified in section two thousand
    47  twenty-two of this article with valid scientific interest and qualifica-
    48  tions, as determined by the commissioner, who are engaged in  demograph-
    49  ic, epidemiological, or other similar studies related to public health.
    50    3.  The department shall maintain an accurate record of all people who
    51  are given access to the information contained in the ALS and MND  regis-
    52  try.  Such  a  record  shall  include the name of the person authorizing
    53  access, the name, title and organizational affiliation of persons  given
    54  access, dates of access, and the specific purposes for which information
    55  is to be used.
        A. 7845                             3
 
     1    4.  Any  person  who,  in violation of a written agreement to maintain
     2  confidentiality, discloses any information provided under this  article,
     3  or  who  uses  information provided under this article in a manner other
     4  than that prescribed by the commissioner, may be denied  further  access
     5  to any confidential information maintained by the department.
     6    §  2024.  Duties  of the commissioner. The commissioner may promulgate
     7  any regulations necessary to implement the provisions of  this  article,
     8  including but not limited to:
     9    1. Establishing the form, content, and manner by which providers shall
    10  report  ALS  and  MND  information  into  the registry established under
    11  section two thousand twenty-two of this article;
    12    2. Prescribing the permissible uses for the information made available
    13  under this article; and
    14    3. Establishing procedures to maintain confidentiality of  information
    15  collected  by providers and provided to members of the department pursu-
    16  ant to this article. This shall  include  a  procedure  to  ensure  that
    17  confidential patient information is deidentified prior to being provided
    18  to authorized participants under this article.
    19    §  2.  This  act shall take effect on the ninetieth day after it shall
    20  have become a law. Effective immediately, the addition, amendment and/or
    21  repeal of any rule or regulation necessary  for  the  implementation  of
    22  this  act  on its effective date are authorized to be made and completed
    23  on or before such effective date.