Bill Text: NY S07048 | 2017-2018 | General Assembly | Introduced

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Bill Title: Requires the testing of newborns for spinal muscular atrophy and requires the department of health to educate the public and distribute informational materials on spinal muscular atrophy.

Spectrum: Partisan Bill (Republican 1-0)

Status: (Introduced - Dead) 2018-05-31 - REPORTED AND COMMITTED TO FINANCE [S07048 Detail]

Download: New_York-2017-S07048-Introduced.html

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                STATE OF NEW YORK
        ________________________________________________________________________
                                          7048
                    IN SENATE
                                       (Prefiled)
                                     January 3, 2018
                                       ___________
        Introduced  by  Sen.  ORTT  --  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  the  testing  of
          newborns for spinal muscular atrophy and public education thereon
          The  People of the State of New York, represented in Senate and Assem-
        bly, do enact as follows:
     1    Section 1. Subdivision (a) of section 2500-a of the public health law,
     2  as amended by chapter 184 of the laws of 2013, is  amended  to  read  as
     3  follows:
     4    (a) It shall be the duty of the administrative officer or other person
     5  in  charge  of  each institution caring for infants twenty-eight days or
     6  less of age and the person required in pursuance of  the  provisions  of
     7  section  forty-one  hundred thirty of this chapter to register the birth
     8  of a child, to cause to have administered to every such infant or  child
     9  in  its  or  his care a test for phenylketonuria, homozygous sickle cell
    10  disease, hypothyroidism, branched-chain ketonuria,  galactosemia,  homo-
    11  cystinuria,  critical  congenital  heart  defects through pulse oximetry
    12  screening, spinal muscular atrophy, and such other diseases  and  condi-
    13  tions  as  may  from  time  to time be designated by the commissioner in
    14  accordance with rules or regulations  prescribed  by  the  commissioner.
    15  Testing, the recording of the results of such tests, tracking, follow-up
    16  reviews  and educational activities shall be performed at such times and
    17  in such manner as may be prescribed by the commissioner. The commission-
    18  er shall promulgate regulations setting forth the manner in which infor-
    19  mation describing the purposes of the requirements of this section shall
    20  be disseminated to parents or a guardian of the infant tested.
    21    § 2. The public health law is amended by adding a new  section  2500-1
    22  to read as follows:
    23    §  2500-1. Spinal muscular atrophy public education. 1. The department
    24  shall develop and publish informational  materials  for  women  who  may
    25  become pregnant, expectant parents and parents of infants regarding:
    26    (a) the incidence of spinal muscular atrophy;
    27    (b) the risks of spinal muscular atrophy;
         EXPLANATION--Matter in italics (underscored) is new; matter in brackets
                              [ ] is old law to be omitted.
                                                                   LBD13373-01-7
        S. 7048                             2
     1    (c) birth defects caused by spinal muscular atrophy;
     2    (d) methods of diagnosing spinal muscular atrophy; and
     3    (e)   available  methods  of  treating  spinal  muscular  atrophy  and
     4  resources available for families of children born with  spinal  muscular
     5  atrophy.
     6    2.  The  department shall publish the information required pursuant to
     7  subdivision one of this section on its internet website, and  distribute
     8  information  regarding  birth  defects,  treatment  and resources to all
     9  hospitals performing spinal muscular atrophy testing pursuant to section
    10  twenty-five hundred-a of this title.
    11    3. The department may promulgate rules to implement  the  purposes  of
    12  this section.
    13    §  3.  This act shall take effect immediately; except that section one
    14  of this act shall take effect on the one hundred twentieth day after  it
    15  shall  have become a law; provided, however, that effective immediately,
    16  the addition, amendment and/or repeal of any rule or  regulation  neces-
    17  sary  for the implementation of section one of this act on its effective
    18  date are authorized and directed to be made and completed on  or  before
    19  such effective date.