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.
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.