S T A T E   O F   N E W   Y O R K
 ________________________________________________________________________
 
                                   1654
 
                        2023-2024 Regular Sessions
 
                             I N  S E N A T E
 
                             January 13, 2023
                                ___________
 
 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:
 
   Section 1. Subdivision 1 of section 2500-a of the public  health  law,
 as  amended by chapter 730 of the laws of 2021, paragraph (j) as amended
 by chapter 70 of the laws of 2022, is amended to read as follows:
   1. It shall be the duty of the administrative officer or other  person
 in  charge  of  each institution caring for infants twenty-eight days or
 less of age and the person required in pursuance of  the  provisions  of
 section  forty-one  hundred thirty of this chapter to register the birth
 of a child, to cause to have administered to every such infant or  child
 in  its or his care a test for diseases and conditions designated by the
 commissioner under regulations of the commissioner, and for:
   (a) Phenylketonuria[.];
   (b) Homozygous sickle cell disease[.];
   (c) Hypothyroidism[.];
   (d) Branched-chain ketonuria[.];
   (e) Galactosemia[.];
   (f) Homocystinuria[.];
   (g) Critical congenital heart defects through pulse  oximetry  screen-
 ing[.];
   (h)  With  regard  to  any  newborn  infant  who  is identified as, or
 suspected of, having a hearing impairment as a  result  of  a  screening
 conducted  pursuant  to  section  twenty-five hundred-g of this title, a
 urine polymerase chain reaction (PCR) test for  cytomegalovirus,  unless
 the  parent  of the infant objects thereto; provided that if the commis-
 sioner determines that another  test  for  cytomegalovirus  is  diagnos-
 tically equivalent to or better than the urine polymerase chain reaction

  EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                       [ ] is old law to be omitted.
                                                            LBD05581-01-3
              

 S. 1654                             2
 
 test,  the  commissioner may, by regulation under this section, allow or
 require the use of that other test[.];
   (i) Adrenoleukodystrophy[.];
   (j)  Glucose-6-phosphate dehydrogenase deficiency using a quantitative
 enzymatic test or other diagnostic test  in  cases  where:  the  newborn
 infant  presents with hemolytic anemia, hemolytic jaundice, or early-on-
 set increasing neonatal jaundice, that  is,  jaundice  (bilirubin  level
 greater than fortieth percentile for age in hours) persisting beyond the
 day  of  birth through the week after birth; the newborn infant has been
 admitted to the hospital for jaundice following birth; or the biological
 parent of the newborn infant indicates a family, racial, or ethnic  risk
 of   glucose-6-phosphate   dehydrogenase  deficiency,  including  having
 significant African, Asian, Mediterranean, or Middle  Eastern  ancestry;
 AND
   (K) SPINAL MUSCULAR ATROPHY.
   §  2.  The public health law is amended by adding a new section 2500-m
 to read as follows:
   § 2500-M. SPINAL MUSCULAR ATROPHY PUBLIC EDUCATION. 1. THE  DEPARTMENT
 SHALL  DEVELOP  AND  PUBLISH  INFORMATIONAL  MATERIALS FOR WOMEN WHO MAY
 BECOME PREGNANT, EXPECTANT PARENTS AND PARENTS OF INFANTS REGARDING:
   (A) THE INCIDENCE OF SPINAL MUSCULAR ATROPHY;
   (B) THE RISKS OF SPINAL MUSCULAR ATROPHY;
   (C) BIRTH DEFECTS CAUSED BY SPINAL MUSCULAR ATROPHY;
   (D) METHODS OF DIAGNOSING SPINAL MUSCULAR ATROPHY; AND
   (E)  AVAILABLE  METHODS  OF  TREATING  SPINAL  MUSCULAR  ATROPHY   AND
 RESOURCES  AVAILABLE  FOR FAMILIES OF CHILDREN BORN WITH SPINAL MUSCULAR
 ATROPHY.
   2. THE DEPARTMENT SHALL PUBLISH THE INFORMATION REQUIRED  PURSUANT  TO
 SUBDIVISION  ONE OF THIS SECTION ON ITS INTERNET WEBSITE, AND DISTRIBUTE
 INFORMATION REGARDING BIRTH DEFECTS,  TREATMENT  AND  RESOURCES  TO  ALL
 HOSPITALS PERFORMING SPINAL MUSCULAR ATROPHY TESTING PURSUANT TO SECTION
 TWENTY-FIVE HUNDRED-A OF THIS TITLE.
   3.  THE  DEPARTMENT  MAY PROMULGATE RULES TO IMPLEMENT THE PURPOSES OF
 THIS SECTION.
   § 3. This act shall take effect immediately; except that  section  one
 of  this act shall take effect on the one hundred twentieth day after it
 shall have become a law. Effective immediately, the addition,  amendment
 and/or repeal of any rule or regulation necessary for the implementation
 of  section  one  of this act on its effective date are authorized to be
 made and completed on or before such effective date.