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92_HB5870eng HB5870 Engrossed LRB9213311DJgcB 1 AN ACT in relation to public health. 2 Be it enacted by the People of the State of Illinois, 3 represented in the General Assembly: 4 Section 5. The Phenylketonuria Testing Act is amended by 5 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. 22 (410 ILCS 240/2) (from Ch. 111 1/2, par. 4904) 23 Sec. 2. The Department of Public Health shall administer 24 the provisions of this Act and shall: 25 (a) Institute and carry on an intensive educational 26 program among physicians, hospitals, public health nurses and 27 the public concerning the diseases phenylketonuria, 28 hypothyroidism, galactosemia and other metabolic diseases. 29 This educational program shall include information about the 30 nature of the diseases and examinations for the detection of HB5870 Engrossed -2- LRB9213311DJgcB 1 the diseases in early infancy in order that measures may be 2 taken to prevent the mental retardation resulting from the 3 diseases. 4 (a-5) Beginning July 1, 2002, provide all newborns with 5 expanded screening tests for the presence of genetic, 6 endocrine, or other metabolic disorders, including 7 phenylketonuria, galactosemia, hypothyroidism, congenital 8 adrenal hyperplasia, biotinidase deficiency, and sickling 9 disorders, as well as other amino acid disorders, organic 10 acid disorders, fatty acid oxidation disorders, and other 11 abnormalities detectable through the use of a tandem mass 12 spectrometer. If by July 1, 2002, the Department is unable to 13 provide expanded screening using the State Laboratory, it 14 shall temporarily provide such screening through an 15 accredited laboratory selected by the Department until the 16 Department has the capacity to provide screening through the 17 State Laboratory. If expanded screening is provided on a 18 temporary basis through an accredited laboratory, the 19 Department shall substitute the fee charged by the accredited 20 laboratory, plus a 5% surcharge for documentation and 21 handling, for the fee authorized in subsection (e) of this 22 Section. 23 (b) Maintain a registry of cases including information 24 of importance for the purpose of follow-up services to 25 prevent mental retardation. 26 (c) Supply the necessary treatment product where 27 practicable for diagnosed cases for as long as medically 28 indicated, when the product is not available through other 29 State agencies. 30 (d) Arrange for or provide public health nursing, 31 nutrition and social services and clinical consultation as 32 indicated. 33 (e) Require that all specimens collected pursuant to 34 this Act or the rules and regulations promulgated hereunder HB5870 Engrossed -3- LRB9213311DJgcB 1 be submitted for testing to the nearest Department of Public 2 Health laboratory designated to perform such tests. The 3 Department may develop a reasonable fee structure and may 4 levy fees according to such structure to cover the cost of 5 providing this testing service. Fees collected from the 6 provision of this testing service shall be placed in a 7 special fund in the State Treasury, hereafter known as the 8 Metabolic Screening and Treatment Fund. Other State and 9 federal funds for expenses related to metabolic screening, 10 follow-up and treatment programs may also be placed in such 11 Fund. Moneys shall be appropriated from such Fund to the 12 Department of Public Health solely for the purposes of 13 providing metabolic screening, follow-up and treatment 14 programs. Nothing in this Act shall be construed to prohibit 15 any licensed medical facility from collecting additional 16 specimens for testing for metabolic or neonatal diseases or 17 any other diseases or conditions, as it deems fit. Any person 18 violating the provisions of this subsection (e) is guilty of 19 a petty offense. 20 (Source: P.A. 83-87.) 21 Section 99. Effective date. This Act takes effect upon 22 becoming law.