THE BILL ITSELF
HB 1335
Newborn Screenings
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A bill to be entitled
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An act relating to newborn screenings; providing a
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short title; amending s. 383.14, F.S.; revising
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rulemaking procedures; requiring, beginning on a
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specified date, that newborns to be screened for
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biliary atresia; requiring the Department of Health to
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consult with the Genetics and Newborn Screening
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Advisory Council before adopting certain rules;
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requiring the department, by a specified date, to
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implement a certain education campaign relating to
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biliary atresia; providing an effective date.
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Be It Enacted by the Legislature of the State of Florida:
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This act may be cited as "Mattie's Law." Section 1.
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Section 2. Paragraph (a) of subsection (2) of section
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383.14, Florida Statutes, is amended and paragraph (c) is added
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to that subsection and paragraph (i) is added to subsection (3)
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of that section, to read:
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383.14 Screening for metabolic disorders, other hereditary
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and congenital disorders, and environmental risk factors.—
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(2) RULES.—
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(a) After consultation with the Genetics and Newborn
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Screening Advisory Council, The department shall adopt and
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enforce rules requiring that every newborn in this state shall:
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1. Before becoming 1 week of age, have a blood specimen
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collected for newborn screenings;
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2. Be tested for any condition included on the federal
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Recommended Uniform Screening Panel which the council advises
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the department should be included under the state's screening
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program. After the council recommends that a condition be
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included, the department shall submit a legislative budget
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request to seek an appropriation to add testing of the condition
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to the newborn screening program. The department shall expand
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statewide screening of newborns to include screening for such
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conditions within 18 months after the council renders such
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advice, if a test approved by the United States Food and Drug
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Administration or a test offered by an alternative vendor is
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available. If such a test is not available within 18 months
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after the council makes its recommendation, the department shall
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implement such screening as soon as a test offered by the United
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States Food and Drug Administration or by an alternative vendor
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is available;
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3. At the appropriate age, be tested for such other
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metabolic diseases and hereditary or congenital disorders as the
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department may deem necessary; and
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4. Beginning January 1, 2027, be screened for biliary
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atresia; and
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5.4. Subject to legislative appropriation, beginning
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January 1, 2027, be screened for Duchenne muscular dystrophy.
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(c) The department shall consult with the Genetics and
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Newborn Screening Advisory Council before adopting rules
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regarding screening methods, follow-up procedures, and the
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inclusion of additional conditions in the screening program.
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(3) DEPARTMENT OF HEALTH; POWERS AND DUTIES.—The
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department shall administer and provide certain services to
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implement the provisions of this section and shall:
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(i) By October 1, 2026, implement a statewide public
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health education campaign to increase public awareness and
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understanding of biliary atresia and its associated risks. The
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campaign shall, at a minimum:
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1. Educate new and expecting parents on the symptoms of
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biliary atresia and the importance of early diagnosis.
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2. Provide guidance to health care providers licensed
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under chapters 458, 459, and 464 on strategies for identifying
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biliary atresia in infants and the risks of delayed treatment.
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All provisions of this subsection must be coordinated with the
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provisions and plans established under this chapter, chapter
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411, and Pub. L. No. 99-457.
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Section 3. This act shall take effect July 1, 2026.