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92_HB5870ham001 LRB9213311DHpcam 1 AMENDMENT TO HOUSE BILL 5870 2 AMENDMENT NO. . Amend House Bill 5870 by replacing 3 everything after the enacting clause with the following: 4 "Section 5. The Phenylketonuria Testing Act is amended 5 by adding Section 1.5 and changing Section 2 as follows: 6 (410 ILCS 240/1.5 new) 7 Sec. 1.5. Definitions. In this Act: 8 "Accredited laboratory" means any laboratory that holds a 9 valid certificate issued under the Clinical Laboratory 10 Improvement Amendments of 1988, 102 Stat. 2903, 42 U.S.C. 11 263a, as amended, and that reports its screening results by 12 using normal pediatric reference ranges. 13 "Expanded screening" means screening for genetic and 14 metabolic disorders, including but not limited to amino acid 15 disorders, organic acid disorders, fatty acid oxidation 16 disorders, and other abnormal profiles, in newborn infants 17 that can be detected through the use of a tandem mass 18 spectrometer. 19 "Tandem mass spectrometer" means an analytical instrument 20 used to detect numerous genetic and metabolic disorders at 21 one time. -2- LRB9213311DHpcam 1 (410 ILCS 240/2) (from Ch. 111 1/2, par. 4904) 2 Sec. 2. The Department of Public Health shall administer 3 the provisions of this Act and shall: 4 (a) Institute and carry on an intensive educational 5 program among physicians, hospitals, public health nurses and 6 the public concerning the diseases phenylketonuria, 7 hypothyroidism, galactosemia and other metabolic diseases. 8 This educational program shall include information about the 9 nature of the diseases and examinations for the detection of 10 the diseases in early infancy in order that measures may be 11 taken to prevent the mental retardation resulting from the 12 diseases. 13 (a-5) Beginning July 1, 2002, provide all newborns with 14 expanded screening tests for the presence of genetic, 15 endocrine, or other metabolic disorders, including 16 phenylketonuria, galactosemia, hypothyroidism, congenital 17 adrenal hyperplasia, biotinidase deficiency, and sickling 18 disorders, as well as other amino acid disorders, organic 19 acid disorders, fatty acid oxidation disorders, and other 20 abnormalities detectable through the use of a tandem mass 21 spectrometer. If by July 1, 2002, the Department is unable to 22 provide expanded screening using the State Laboratory, it 23 shall temporarily provide such screening through an 24 accredited laboratory selected by the Department until the 25 Department has the capacity to provide screening through the 26 State Laboratory. If expanded screening is provided on a 27 temporary basis through an accredited laboratory, the 28 Department shall substitute the fee charged by the accredited 29 laboratory, plus a 5% surcharge for documentation and 30 handling, for the fee authorized in subsection (e) of this 31 Section. 32 (b) Maintain a registry of cases including information 33 of importance for the purpose of follow-up services to 34 prevent mental retardation. -3- LRB9213311DHpcam 1 (c) Supply the necessary treatment product where 2 practicable for diagnosed cases for as long as medically 3 indicated, when the product is not available through other 4 State agencies. 5 (d) Arrange for or provide public health nursing, 6 nutrition and social services and clinical consultation as 7 indicated. 8 (e) Require that all specimens collected pursuant to 9 this Act or the rules and regulations promulgated hereunder 10 be submitted for testing to the nearest Department of Public 11 Health laboratory designated to perform such tests. The 12 Department may develop a reasonable fee structure and may 13 levy fees according to such structure to cover the cost of 14 providing this testing service. Fees collected from the 15 provision of this testing service shall be placed in a 16 special fund in the State Treasury, hereafter known as the 17 Metabolic Screening and Treatment Fund. Other State and 18 federal funds for expenses related to metabolic screening, 19 follow-up and treatment programs may also be placed in such 20 Fund. Moneys shall be appropriated from such Fund to the 21 Department of Public Health solely for the purposes of 22 providing metabolic screening, follow-up and treatment 23 programs. Nothing in this Act shall be construed to prohibit 24 any licensed medical facility from collecting additional 25 specimens for testing for metabolic or neonatal diseases or 26 any other diseases or conditions, as it deems fit. Any person 27 violating the provisions of this subsection (e) is guilty of 28 a petty offense. 29 (Source: P.A. 83-87.) 30 Section 99. Effective date. This Act takes effect upon 31 becoming law.".
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