Senate Bill S7048

                            
 
                     S T A T E   O F   N E W   Y O R K
 ________________________________________________________________________
 
                                   7048
 
                             I N  S E N A T E
 
                                (PREFILED)
 
                              January 3, 2018
                                ___________
 
 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 (a) of section 2500-a of the public health law,
 as amended by chapter 184 of the laws of 2013, is  amended  to  read  as
 follows:
   (a) 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 phenylketonuria, homozygous sickle cell
 disease, hypothyroidism, branched-chain ketonuria,  galactosemia,  homo-
 cystinuria,  critical  congenital  heart  defects through pulse oximetry
 screening, SPINAL MUSCULAR ATROPHY, and such other diseases  and  condi-
 tions  as  may  from  time  to time be designated by the commissioner in
 accordance with rules or regulations  prescribed  by  the  commissioner.
 Testing, the recording of the results of such tests, tracking, follow-up
 reviews  and educational activities shall be performed at such times and
 in such manner as may be prescribed by the commissioner. The commission-
 er shall promulgate regulations setting forth the manner in which infor-
 mation describing the purposes of the requirements of this section shall
 be disseminated to parents or a guardian of the infant tested.
   § 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;
 
              

  EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                       [ ] is old law to be omitted.
                                                            LBD13373-01-7

 S. 7048                             2
 
   (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; provided, however, that effective immediately,
 the addition, amendment and/or repeal of any rule or  regulation  neces-
 sary  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.