Bill Text: NY A04572 | 2021-2022 | General Assembly | Introduced

---

Bill Title: Adds adrenoleukodystrophy and glucose-6-phosphate dehydrogenase deficiency to the required list of screenings for newborns.

Spectrum: Partisan Bill (Democrat 3-0)

Status: (Passed) 2021-12-22 - approval memo.97 [A04572 Detail]

Download: New_York-2021-A04572-Introduced.html

---

                STATE OF NEW YORK
        ________________________________________________________________________

                                          4572

                               2021-2022 Regular Sessions

                   IN ASSEMBLY

                                    February 4, 2021
                                       ___________

        Introduced  by  M.  of  A.  GOTTFRIED  --  read once and referred to the
          Committee on Health

        AN ACT to amend the public health law, in relation to newborn  screening
          for  adrenoleukodystrophy  and glucose-6-phosphate dehydrogenase defi-
          ciency

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

     1    Section  1.  Section  2500-a  of  the public health law, as separately
     2  amended by chapters 943 and 1016 of the laws of 1974, subdivision (a) as
     3  amended by  chapter 307 of the laws of 2018 and subdivision (c) as added
     4  by section 113 of part E of chapter 56 of the laws of 2013,  is  amended
     5  to read as follows:
     6    §  2500-a. Test for phenylketonuria and other diseases and conditions.
     7  [(a)] 1. It shall be the duty of the  administrative  officer  or  other
     8  person  in  charge  of  each institution caring for infants twenty-eight
     9  days or less of  age  and  the  person  required  in  pursuance  of  the
    10  provisions of section forty-one hundred thirty of this chapter to regis-
    11  ter  the  birth  of a child, to cause to have administered to every such
    12  infant or child in its or his care a test for  diseases  and  conditions
    13  designated  by  the  commissioner under regulations of the commissioner,
    14  and for:
    15    [i. phenylketonuria,
    16    ii. homozygous sickle cell disease,
    17    iii. hypothyroidism,
    18    iv. branched-chain ketonuria,
    19    v. galactosemia,
    20    vi. homocystinuria,
    21    vii. critical congenital heart defects through pulse oximetry  screen-
    22  ing,
    23    viii. with] (a) Phenylketonuria.
    24    (b) Homozygous sickle cell disease.

         EXPLANATION--Matter in italics (underscored) is new; matter in brackets
                              [ ] is old law to be omitted.
                                                                   LBD00136-01-1
        A. 4572                             2

     1    (c) Hypothyroidism.
     2    (d) Branched-chain ketonuria.
     3    (e) Galactosemia.
     4    (f) Homocystinuria.
     5    (g)  Critical congenital   heart   defects   through   pulse  oximetry
     6  screening.
     7    (h) With regard to  any  newborn  infant  who  is  identified  as,  or
     8  suspected  of,  having  a  hearing impairment as a result of a screening
     9  conducted pursuant to  section  twenty-five  hundred-g  of  this  title,
    10  [cause  to  be  administered  to  such  infant] a urine polymerase chain
    11  reaction (PCR) test for cytomegalovirus, unless the parent of the infant
    12  objects thereto; provided  that  if  the  commissioner  determines  that
    13  another  test  for  cytomegalovirus  is  diagnostically equivalent to or
    14  better than the urine polymerase chain reaction test,  the  commissioner
    15  may,  by regulation under this section, allow or require the use of that
    16  other test[, and
    17    ix. such other diseases and conditions as may from  time  to  time  be
    18  designated  by  the commissioner in accordance with rules or regulations
    19  prescribed by the commissioner].
    20    (i) Adrenoleukodystrophy.
    21    (j) Glucose-6-phosphate dehydrogenase deficiency.
    22    2. Testing, the recording of the  results  of  such  tests,  tracking,
    23  follow-up  reviews and educational activities shall be performed at such
    24  times and in such manner as may be prescribed by the  commissioner.  The
    25  commissioner  shall  promulgate  regulations setting forth the manner in
    26  which information describing the purposes of the  requirements  of  this
    27  section  shall  be  disseminated  to parents or a guardian of the infant
    28  tested.
    29    [(b)] 3. The provisions of this section shall not apply in the case of
    30  any infant or child whose parent or guardian is a member of a recognized
    31  religious organization whose teachings and tenets are  contrary  to  the
    32  testing  herein required and who notifies the person charged with having
    33  such test administered of his objection thereto.
    34    [(c) By regulation, the commissioner  shall  add  adrenoleukodystrophy
    35  ("ALD")  to  the list of diseases and conditions for which testing shall
    36  be performed pursuant to subdivision (a) of this section upon validation
    37  by the Wadsworth Center of a test for ALD. The  Wadsworth  Center  shall
    38  undertake  the  process  for  validation upon the development of a test.
    39  This subdivision shall be known and may be cited as "Aidan's Law."]
    40    § 2. This act shall take effect on the one hundred eightieth day after
    41  it shall have become a law. Effective immediately, the  commissioner  of
    42  health  shall  make regulations and take other actions reasonably neces-
    43  sary to implement this act on that date.