Florida Senate - 2017                             CS for SB 1124
       By the Committee on Health Policy; and Senator Book
       588-02956-17                                          20171124c1
    1                        A bill to be entitled                      
    2         An act relating to newborn screenings; amending s.
    3         383.14, F.S.; requiring the Department of Health, upon
    4         the advice of the Genetics and Newborn Screening
    5         Advisory Council, to expand within a specified period
    6         the statewide screening of newborns to include any
    7         condition on the federal Recommended Uniform Screening
    8         Panel; requiring the council to determine whether a
    9         condition should be included in the state’s screening
   10         program within a specified period after its addition
   11         to the federal panel; providing an effective date.
   13  Be It Enacted by the Legislature of the State of Florida:
   15         Section 1. Subsection (2) and paragraph (a) of subsection
   16  (5) of section 383.14, Florida Statutes, are amended to read:
   17         383.14 Screening for metabolic disorders, other hereditary
   18  and congenital disorders, and environmental risk factors.—
   19         (2) RULES.—
   20         (a) After consultation with the Genetics and Newborn
   21  Screening Advisory Council, the department shall adopt and
   22  enforce rules requiring that every newborn in this state shall:
   23         1. Before, prior to becoming 1 week of age, be subjected to
   24  a test for phenylketonuria;
   25         2.Be tested for any condition included on the federal
   26  Recommended Uniform Screening Panel which the council advises
   27  the department should be included under the state’s screening
   28  program. The department shall expand statewide screening of
   29  newborns to include screening for such conditions within 18
   30  months after the council renders such advice, if a test approved
   31  by the United States Food and Drug Administration or a test
   32  offered by an alternative vendor which is compatible with the
   33  clinical standards established under part I of chapter 483 is
   34  available. If such a test is not available within 18 months
   35  after the council makes its recommendation, the department shall
   36  implement such screening as soon as a test offered by the United
   37  States Food and Drug Administration or by an alternative vendor
   38  is available; and
   39         3.and, At the appropriate age, be tested for such other
   40  metabolic diseases and hereditary or congenital disorders as the
   41  department may deem necessary from time to time.
   42         (b) After consultation with the Office of Early Learning,
   43  the department shall also adopt and enforce rules requiring
   44  every newborn in this state to be screened for environmental
   45  risk factors that place children and their families at risk for
   46  increased morbidity, mortality, and other negative outcomes.
   47         (c) The department shall adopt such additional rules as are
   48  found necessary for the administration of this section and s.
   49  383.145, including rules providing definitions of terms, rules
   50  relating to the methods used and time or times for testing as
   51  accepted medical practice indicates, rules relating to charging
   52  and collecting fees for the administration of the newborn
   53  screening program authorized by this section, rules for
   54  processing requests and releasing test and screening results,
   55  and rules requiring mandatory reporting of the results of tests
   56  and screenings for these conditions to the department.
   57         (5) ADVISORY COUNCIL.—There is established a Genetics and
   58  Newborn Screening Advisory Council made up of 15 members
   59  appointed by the State Surgeon General. The council shall be
   60  composed of two consumer members, three practicing
   61  pediatricians, at least one of whom must be a pediatric
   62  hematologist, one representative from each of the four medical
   63  schools in the state, the State Surgeon General or his or her
   64  designee, one representative from the Department of Health
   65  representing Children’s Medical Services, one representative
   66  from the Florida Hospital Association, one individual with
   67  experience in newborn screening programs, one individual
   68  representing audiologists, and one representative from the
   69  Agency for Persons with Disabilities. All appointments shall be
   70  for a term of 4 years. The chairperson of the council shall be
   71  elected from the membership of the council and shall serve for a
   72  period of 2 years. The council shall meet at least semiannually
   73  or upon the call of the chairperson. The council may establish
   74  ad hoc or temporary technical advisory groups to assist the
   75  council with specific topics which come before the council.
   76  Council members shall serve without pay. Pursuant to the
   77  provisions of s. 112.061, the council members are entitled to be
   78  reimbursed for per diem and travel expenses. It is the purpose
   79  of the council to advise the department about:
   80         (a) Conditions for which testing should be included under
   81  the screening program and the genetics program. Within 1 year
   82  after a condition is added to the federal Recommended Uniform
   83  Screening Panel, the council shall consider whether the
   84  condition should be included under the state’s screening
   85  program.
   86         Section 2. This act shall take effect July 1, 2017.