Bill Text: NY S03355 | 2019-2020 | 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) 2020-01-08 - REFERRED TO HEALTH [S03355 Detail]

Download: New_York-2019-S03355-Introduced.html

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                STATE OF NEW YORK
        ________________________________________________________________________
                                          3355
                               2019-2020 Regular Sessions
                    IN SENATE
                                    February 6, 2019
                                       ___________
        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. Paragraph 1 of subdivision (a) of  section  2500-a  of  the
     2  public  health  law,  as  amended by chapter 307 of the laws of 2018, is
     3  amended to read as follows:
     4    1. 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:
    10    i. phenylketonuria[,];
    11    ii. homozygous sickle cell disease[,];
    12    iii. hypothyroidism[,];
    13    iv. branched-chain ketonuria[,];
    14    v. galactosemia[,];
    15    vi. homocystinuria[,];
    16    vii.  critical congenital heart defects through pulse oximetry screen-
    17  ing[,];
    18    viii. with regard to any newborn  infant  who  is  identified  as,  or
    19  suspected  of,  having  a  hearing impairment as a result of a screening
    20  conducted pursuant to section twenty-five hundred-g of this title, cause
    21  to be administered to such infant  a  urine  polymerase  chain  reaction
    22  (PCR)  test for cytomegalovirus, unless the parent of the infant objects
    23  thereto; provided that if the commissioner determines that another  test
    24  for  cytomegalovirus  is diagnostically equivalent to or better than the
    25  urine polymerase chain reaction test, the  commissioner  may,  by  regu-
         EXPLANATION--Matter in italics (underscored) is new; matter in brackets
                              [ ] is old law to be omitted.
                                                                   LBD09416-01-9
        S. 3355                             2
     1  lation under this section, allow or require the use of that other test[,
     2  and];
     3    ix. spinal muscular atrophy; and
     4    x.  such  other  diseases  and  conditions as may from time to time be
     5  designated by the commissioner in accordance with rules  or  regulations
     6  prescribed by the commissioner.
     7    §  2.  The public health law is amended by adding a new section 2500-1
     8  to read as follows:
     9    § 2500-1. Spinal muscular atrophy public education. 1. The  department
    10  shall  develop  and  publish  informational  materials for women who may
    11  become pregnant, expectant parents and parents of infants regarding:
    12    (a) the incidence of spinal muscular atrophy;
    13    (b) the risks of spinal muscular atrophy;
    14    (c) birth defects caused by spinal muscular atrophy;
    15    (d) methods of diagnosing spinal muscular atrophy; and
    16    (e)  available  methods  of  treating  spinal  muscular  atrophy   and
    17  resources  available  for families of children born with spinal muscular
    18  atrophy.
    19    2. The department shall publish the information required  pursuant  to
    20  subdivision  one of this section on its internet website, and distribute
    21  information regarding birth defects,  treatment  and  resources  to  all
    22  hospitals performing spinal muscular atrophy testing pursuant to section
    23  twenty-five hundred-a of this title.
    24    3.  The  department  may promulgate rules to implement the purposes of
    25  this section.
    26    § 3. This act shall take effect immediately; except that  section  one
    27  of  this act shall take effect on the one hundred twentieth day after it
    28  shall have become a law. Effective immediately, the addition,  amendment
    29  and/or repeal of any rule or regulation necessary for the implementation
    30  of  section  one  of  this  act on its effective date are authorized and
    31  directed to be made and completed on or before such effective date.