Text: HF00458 Text: HF00460 Text: HF00400 - HF00499 Text: HF Index Bills and Amendments: General Index Bill History: General Index
PAG LIN
1 1 Section 1. NEW SECTION. 135.26 EXPANDED SCREENING
1 2 PROGRAM – GENETIC AND METABOLIC DISORDERS – FEE – FUND.
1 3 1. DEFINITIONS. As used in this section, unless the
1 4 context otherwise requires:
1 5 a. "Accredited laboratory" means any laboratory that holds
1 6 a valid certificate issued under the clinical laboratory
1 7 improvement amendments of 1988, 42 U.S.C. } 263a, as amended,
1 8 and that reports its screening results by using normal
1 9 pediatric reference ranges.
1 10 b. "Expanded screening" means screening for genetic and
1 11 metabolic disorders, including but not limited to amino acid
1 12 disorders, organic acid disorders, fatty acid disorders, and
1 13 other abnormal profiles, in newborn infants that can be
1 14 detected through the use of a tandem mass spectrometer.
1 15 c. "Tandem mass spectrometer" means an analytical
1 16 instrument used to detect numerous genetic and metabolic
1 17 disorders at one time.
1 18 2. Beginning July 1, 2004, all newborns shall be subjected
1 19 to expanded screening for the presence of genetic, endocrine,
1 20 or other metabolic disorders specified in paragraph "b", and
1 21 such other metabolic disorders as the department may deem
1 22 necessary. In establishing the expanded screening program
1 23 pursuant to this section, the department shall:
1 24 a. Implement an intensive educational program among
1 25 physicians, hospitals, public health nurses, and the public
1 26 concerning the diseases phenylketonuria, hypothyroidism,
1 27 galactosemia, and other metabolic disorders. The educational
1 28 program shall include information about the nature of the
1 29 disorders and examinations for their detection in early
1 30 infancy, in order that measures may be taken to prevent
1 31 resulting mental retardation.
1 32 b. Provide all newborns with expanded screening through
1 33 local health departments for phenylketonuria, galactosemia,
1 34 hypothyroidism, congenital adrenal hyperplasia, biotinidase
1 35 deficiency, and sickling disorders, as well as other amino
2 1 acid disorders, organic acid disorders, fatty acid oxidation
2 2 disorders, and other abnormalities detectable through the use
2 3 of a tandem mass spectrometer.
2 4 c. Supply the necessary treatment product where
2 5 practicable for diagnosed cases for as long as medically
2 6 indicated, when the product is not available through other
2 7 state agencies.
2 8 d. Arrange for or provide, if determined necessary, public
2 9 health nursing, nutrition, and social services, and clinical
2 10 consultation.
2 11 e. Require that all specimens collected via the expanded
2 12 screening be submitted for testing to an accredited laboratory
2 13 designated by the department to perform such tests, with the
2 14 results of the tests reported to the department. The
2 15 department shall establish a reasonable fee to cover the cost
2 16 of providing the expanded screening, and shall deposit the
2 17 fees collected into a special fund created within the state
2 18 treasury and designated as the metabolic screening and
2 19 treatment fund. Additional state and federal funds for
2 20 expenses related to metabolic screening, follow-up, and
2 21 treatment may also be deposited into the fund. Moneys
2 22 deposited into the fund are appropriated to the department
2 23 solely for the purpose of providing metabolic screening,
2 24 follow-up, and treatment. Notwithstanding section 8.33,
2 25 moneys deposited into the special fund that remain
2 26 unencumbered or unobligated at the close of the fiscal year
2 27 shall not revert to any other fund but shall remain available
2 28 for expenditure for the purpose designated in future fiscal
2 29 years. Notwithstanding section 12C.7, subsection 2, interest
2 30 or earnings on moneys deposited into the special fund shall be
2 31 credited to and remain a part of the special fund.
2 32 3. The expanded screening program established pursuant to
2 33 this section shall not be construed to prohibit any licensed
2 34 medical facility from collecting additional specimens for
2 35 testing for metabolic or neonatal diseases or any other
3 1 diseases or conditions which the facility deems necessary.
3 2 4. The provisions of this section shall not apply if a
3 3 newborn's parent or legal guardian submits a signed affidavit
3 4 to a physician or other person whose duty it is to administer
3 5 and report the results of the expanded screening stating that
3 6 the expanded screening conflicts with the tenets and practices
3 7 of a recognized religious denomination of which the newborn,
3 8 parent, or legal guardian is an adherent or member.
3 9 5. The department shall adopt rules relating to
3 10 administration of the educational program, expanded screening,
3 11 and reporting requirements required pursuant to this section.
3 12 EXPLANATION
3 13 This bill provides for the establishment of an expanded
3 14 screening program for newborns for specified genetic and
3 15 metabolic disorders, including phenylketonuria, beginning July
3 16 1, 2004. The bill defines "expanded screening" to mean
3 17 screening for genetic and metabolic disorders, including but
3 18 not limited to amino acid disorders, organic acid disorders,
3 19 fatty acid disorders, and other abnormal profiles, in newborn
3 20 infants that can be detected through the use of a tandem mass
3 21 spectrometer.
3 22 The bill provides that in establishing the expanded
3 23 screening program, the Iowa department of public health shall
3 24 implement an intensive educational program among physicians,
3 25 hospitals, public health nurses, and the public concerning the
3 26 diseases phenylketonuria, hypothyroidism, galactosemia, and
3 27 other metabolic disorders, which shall include information
3 28 about the nature of the disorders and examinations for their
3 29 detection in early infancy. The bill provides that the
3 30 department shall provide all newborns with expanded screening
3 31 through local health departments for phenylketonuria,
3 32 galactosemia, hypothyroidism, congenital adrenal hyperplasia,
3 33 biotinidase deficiency, and sickling disorders, as well as
3 34 other amino acid disorders, organic acid disorders, fatty acid
3 35 oxidation disorders, and other abnormalities detectable
4 1 through the use of a tandem mass spectrometer.
4 2 The bill provides that the department shall supply the
4 3 necessary treatment product where practicable for diagnosed
4 4 cases for as long as medically indicated, when the product is
4 5 not available through other state agencies; arrange for or
4 6 provide necessary public health nursing, nutrition, and social
4 7 services, and clinical consultation; and require that all
4 8 specimens collected be submitted for testing to an accredited
4 9 laboratory designated by the department to perform such tests,
4 10 and require that the results of the tests be reported to the
4 11 department.
4 12 The bill provides that the department shall establish a
4 13 reasonable fee to cover the cost of providing the expanded
4 14 screening, and shall deposit the fees collected into a special
4 15 fund created within the state treasury and designated as the
4 16 metabolic screening and treatment fund. The bill provides
4 17 that additional state and federal funds for expenses related
4 18 to metabolic screening, follow-up, and treatment may also be
4 19 deposited into the fund, and that moneys deposited into the
4 20 fund are appropriated to the department solely for the purpose
4 21 of providing metabolic screening, follow-up, and treatment.
4 22 The bill provides that the expanded screening program shall
4 23 not be construed to prohibit any licensed medical facility
4 24 from collecting additional specimens for testing for metabolic
4 25 or neonatal diseases or any other diseases or conditions which
4 26 the facility deems necessary. The bill additionally provides
4 27 that the program requirements shall not apply if a newborn's
4 28 parent or legal guardian submits a signed affidavit objecting
4 29 to the screening on the basis of a religious conflict. The
4 30 bill provides that the department shall adopt rules relating
4 31 to administration of the educational program, expanded
4 32 screening, and reporting requirements.
4 33 LSB 2867HH 80
4 34 rn/cl/14
Text: HF00458 Text: HF00460 Text: HF00400 - HF00499 Text: HF Index Bills and Amendments: General Index Bill History: General Index
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