S T A T E   O F   N E W   Y O R K
 ________________________________________________________________________
 
                                   3355
 
                        2019-2020 Regular Sessions
 
                             I N  S E N A T E
 
                             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:
 
   Section 1. Paragraph 1 of subdivision (a) of  section  2500-a  of  the
 public  health  law,  as  amended by chapter 307 of the laws of 2018, 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:
   i. phenylketonuria[,];
   ii. homozygous sickle cell disease[,];
   iii. hypothyroidism[,];
   iv. branched-chain ketonuria[,];
   v. galactosemia[,];
   vi. homocystinuria[,];
   vii.  critical congenital heart defects through pulse oximetry screen-
 ing[,];
   viii. 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, cause
 to be administered to such infant  a  urine  polymerase  chain  reaction
 (PCR)  test for cytomegalovirus, unless the parent of the infant objects
 thereto; provided that if the commissioner determines that another  test
 for  cytomegalovirus  is diagnostically equivalent to or better than the
 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
 
 lation under this section, allow or require the use of that other test[,
 and];
   ix. SPINAL MUSCULAR ATROPHY; AND
   X.  such  other  diseases  and  conditions as may from time to time be
 designated by the commissioner in accordance with rules  or  regulations
 prescribed by the commissioner.
   §  2.  The public health law is amended by adding a new section 2500-1
 to read as follows:
   § 2500-1. 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 and
 directed to be made and completed on or before such effective date.