Full Text of HB4896 96th General Assembly
HB4896eng 96TH GENERAL ASSEMBLY
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HB4896 Engrossed |
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LRB096 16094 HLH 31343 b |
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| AN ACT concerning State government.
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| Be it enacted by the People of the State of Illinois,
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| represented in the General Assembly:
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| Section 5. The Newborn Metabolic Screening Act is amended | 5 |
| by changing Section 2 as follows:
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| (410 ILCS 240/2) (from Ch. 111 1/2, par. 4904)
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| Sec. 2. The Department of Public Health shall administer | 8 |
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provisions of this Act and shall:
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| (a) Institute and carry on an intensive educational program | 10 |
| among
physicians, hospitals, public health nurses and the | 11 |
| public concerning
the diseases phenylketonuria, | 12 |
| hypothyroidism, galactosemia and other
metabolic diseases. | 13 |
| This
educational program shall include information about the | 14 |
| nature of the
diseases and examinations for the detection of | 15 |
| the diseases in early
infancy in order that measures may be | 16 |
| taken to prevent the mental
retardation resulting from the | 17 |
| diseases.
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| (a-5) Beginning July 1, 2002, provide all newborns
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| expanded screening tests for the presence of genetic, | 20 |
| endocrine, or
other metabolic disorders, including | 21 |
| phenylketonuria, galactosemia,
hypothyroidism, congenital | 22 |
| adrenal hyperplasia, biotinidase deficiency,
and sickling | 23 |
| disorders, as well as other amino acid disorders, organic
acid |
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| disorders, fatty acid oxidation disorders, and other | 2 |
| abnormalities
detectable through the use of a tandem mass | 3 |
| spectrometer. If by July 1,
2002, the Department is unable to | 4 |
| provide expanded screening using the
State Laboratory, it shall | 5 |
| temporarily provide such screening
through an accredited | 6 |
| laboratory selected by the Department until the
Department has | 7 |
| the capacity to provide screening through the State
Laboratory. | 8 |
| If expanded screening is provided on a temporary basis
through | 9 |
| an accredited laboratory, the Department shall substitute the | 10 |
| fee
charged by the accredited laboratory, plus a 5% surcharge | 11 |
| for
documentation and handling, for the fee authorized in | 12 |
| subsection (e) of
this Section.
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| (a-6) In accordance with the timetable specified in this | 14 |
| subsection, provide all newborns with expanded screening tests | 15 |
| for the presence of certain Lysosomal Storage Disorders known | 16 |
| as Krabbe, Pompe, Gaucher, Fabry, and Niemann-Pick. The testing | 17 |
| shall begin within 6 months following the occurrence of all of | 18 |
| the following: | 19 |
| (i) the registration with the federal Food and Drug | 20 |
| Administration of the necessary reagents; | 21 |
| (ii) the availability of the necessary reagents from | 22 |
| the Centers for Disease Control and Prevention; | 23 |
| (iii) the availability of quality assurance testing | 24 |
| methodology for these processes; and | 25 |
| (iv) the acquisition and installment by the Department | 26 |
| of the equipment necessary to implement the expanded |
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| screening tests. | 2 |
| It is the goal of this amendatory Act of the 95th General | 3 |
| Assembly that the expanded screening for the specified | 4 |
| Lysosomal Storage Disorders begins within 3 years after the | 5 |
| effective date of this Act. The Department is authorized to | 6 |
| implement an additional fee for the screening prior to | 7 |
| beginning the testing in order to accumulate the resources for | 8 |
| start-up and other costs associated with implementation of the | 9 |
| screening and thereafter to support the costs associated with | 10 |
| screening and follow-up programs for the specified Lysosomal | 11 |
| Storage Disorders.
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| (b) Maintain a registry of cases including information of | 13 |
| importance
for the purpose of follow-up services to prevent | 14 |
| mental retardation.
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| (c) Supply the necessary metabolic treatment formulas
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| where practicable for
diagnosed cases of amino acid metabolism | 17 |
| disorders, including phenylketonuria, organic acid disorders, | 18 |
| and fatty acid oxidation disorders for as long as medically | 19 |
| indicated, when the product is
not available through other | 20 |
| State agencies.
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| (d) Arrange for or provide public health nursing, nutrition | 22 |
| and
social services and clinical consultation as indicated.
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| (e) Require that all specimens collected pursuant to this | 24 |
| Act or the rules
and regulations promulgated hereunder be | 25 |
| submitted for testing to the nearest
Department of Public | 26 |
| Health laboratory designated to perform such tests.
The |
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| Department may develop a reasonable fee structure and may levy | 2 |
| fees
according to such structure to cover the cost of providing | 3 |
| this testing
service. Fees collected from the provision of this | 4 |
| testing service shall
be placed in a special fund in the State | 5 |
| Treasury, hereafter known as the
Metabolic Screening and | 6 |
| Treatment Fund. Other State and federal funds for
expenses | 7 |
| related to metabolic screening, follow-up and treatment | 8 |
| programs
may also be placed in such Fund. Moneys shall be | 9 |
| appropriated from such
Fund to the Department of Public Health | 10 |
| solely for the purposes of providing
metabolic screening, | 11 |
| follow-up and treatment programs. The Metabolic Screening and | 12 |
| Treatment Fund is not subject to administrative charges, or | 13 |
| charge-backs, including but not limited to those authorized | 14 |
| under Section 8h of the State Finance Act. Nothing in this
Act | 15 |
| shall be construed to prohibit any licensed medical facility | 16 |
| from
collecting
additional specimens for testing for metabolic | 17 |
| or neonatal diseases or any
other diseases or conditions, as it | 18 |
| deems fit. Any person
violating the provisions of this | 19 |
| subsection (e) is guilty of a petty offense.
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| (Source: P.A. 95-695, eff. 11-5-07.)
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| Section 99. Effective date. This Act takes effect upon | 22 |
| becoming law.
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