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