Full Text of SB1566 95th General Assembly
SB1566enr 95TH GENERAL ASSEMBLY
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| AN ACT concerning public health.
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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 1. Short title. This Act may be cited as the | 5 |
| Genetic and Metabolic Diseases Advisory Committee Act. | 6 |
| Section 5. Genetic and Metabolic Diseases Advisory | 7 |
| Committee. | 8 |
| (a) The Director of Public Health shall create the Genetic | 9 |
| and Metabolic Diseases Advisory Committee to advise the | 10 |
| Department of Public Health regarding issues relevant to | 11 |
| newborn screenings of metabolic diseases. | 12 |
| (b) The purposes of Metabolic Diseases Advisory Committee | 13 |
| are all of the following: | 14 |
| (1) Advise the Department regarding issues relevant to | 15 |
| its Genetics Program. | 16 |
| (2) Advise the Department regarding optimal laboratory | 17 |
| methodologies for screening of the targeted conditions.
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| (3) Recommend to the Department consultants who are | 19 |
| qualified to diagnose a condition detected by screening, | 20 |
| provide management of care, and genetic counseling for the | 21 |
| family.
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| (4) Monitor the incidence of each condition for which | 23 |
| newborn screening is done, evaluate the effects of |
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| treatment and genetic counseling, and provide advice on | 2 |
| disorders to be included in newborn screening panel.
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| (5) Advise the Department on educational programs for | 4 |
| professionals and the general public.
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| (6) Advise the Department on new developments and areas | 6 |
| of interest in relation to the Genetics Program. | 7 |
| (7) Any other matter deemed appropriate by the | 8 |
| Committee and the Director. | 9 |
| (c) The Committee shall consist of 20 members appointed by | 10 |
| the Director of Public Health. Membership shall include | 11 |
| physicians, geneticists, nurses, nutritionists, and other | 12 |
| allied health professionals, as well as patients and parents. | 13 |
| Ex-officio members may be appointed, but shall not have voting | 14 |
| privileges. | 15 |
| Section 10. The State Finance Act is amended by changing | 16 |
| Section 8h as follows: | 17 |
| (30 ILCS 105/8h)
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| Sec. 8h. Transfers to General Revenue Fund. | 19 |
| (a) Except as otherwise provided in this Section and | 20 |
| Section 8n of this Act, and (c), (d), or (e),
notwithstanding | 21 |
| any other
State law to the contrary, the Governor
may, through | 22 |
| June 30, 2007, from time to time direct the State Treasurer and | 23 |
| Comptroller to transfer
a specified sum from any fund held by | 24 |
| the State Treasurer to the General
Revenue Fund in order to |
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| help defray the State's operating costs for the
fiscal year. | 2 |
| The total transfer under this Section from any fund in any
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| fiscal year shall not exceed the lesser of (i) 8% of the | 4 |
| revenues to be deposited
into the fund during that fiscal year | 5 |
| or (ii) an amount that leaves a remaining fund balance of 25% | 6 |
| of the July 1 fund balance of that fiscal year. In fiscal year | 7 |
| 2005 only, prior to calculating the July 1, 2004 final | 8 |
| balances, the Governor may calculate and direct the State | 9 |
| Treasurer with the Comptroller to transfer additional amounts | 10 |
| determined by applying the formula authorized in Public Act | 11 |
| 93-839 to the funds balances on July 1, 2003.
No transfer may | 12 |
| be made from a fund under this Section that would have the
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| effect of reducing the available balance in the fund to an | 14 |
| amount less than
the amount remaining unexpended and unreserved | 15 |
| from the total appropriation
from that fund estimated to be | 16 |
| expended for that fiscal year. This Section does not apply to | 17 |
| any
funds that are restricted by federal law to a specific use, | 18 |
| to any funds in
the Motor Fuel Tax Fund, the Intercity | 19 |
| Passenger Rail Fund, the Hospital Provider Fund, the Medicaid | 20 |
| Provider Relief Fund, the Teacher Health Insurance Security | 21 |
| Fund, the Reviewing Court Alternative Dispute Resolution Fund, | 22 |
| the Voters' Guide Fund, the Foreign Language Interpreter Fund, | 23 |
| the Lawyers' Assistance Program Fund, the Supreme Court Federal | 24 |
| Projects Fund, the Supreme Court Special State Projects Fund, | 25 |
| the Supplemental Low-Income Energy Assistance Fund, the Good | 26 |
| Samaritan Energy Trust Fund, the Low-Level Radioactive Waste |
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| Facility Development and Operation Fund, the Horse Racing | 2 |
| Equity Trust Fund, the Metabolic Screening and Treatment Fund,
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| or the Hospital Basic Services Preservation Fund, or to any
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| funds to which subsection (f) of Section 20-40 of the Nursing | 5 |
| and Advanced Practice Nursing Act applies. No transfers may be | 6 |
| made under this Section from the Pet Population Control Fund. | 7 |
| Notwithstanding any
other provision of this Section, for fiscal | 8 |
| year 2004,
the total transfer under this Section from the Road | 9 |
| Fund or the State
Construction Account Fund shall not exceed | 10 |
| the lesser of (i) 5% of the revenues to be deposited
into the | 11 |
| fund during that fiscal year or (ii) 25% of the beginning | 12 |
| balance in the fund.
For fiscal year 2005 through fiscal year | 13 |
| 2007, no amounts may be transferred under this Section from the | 14 |
| Road Fund, the State Construction Account Fund, the Criminal | 15 |
| Justice Information Systems Trust Fund, the Wireless Service | 16 |
| Emergency Fund, or the Mandatory Arbitration Fund.
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| In determining the available balance in a fund, the | 18 |
| Governor
may include receipts, transfers into the fund, and | 19 |
| other
resources anticipated to be available in the fund in that | 20 |
| fiscal year.
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| The State Treasurer and Comptroller shall transfer the | 22 |
| amounts designated
under this Section as soon as may be | 23 |
| practicable after receiving the direction
to transfer from the | 24 |
| Governor.
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| (a-5) Transfers directed to be made under this Section on | 26 |
| or before February 28, 2006 that are still pending on May 19, |
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| 2006 ( the effective date of Public Act 94-774)
this amendatory | 2 |
| Act of the 94th General Assembly shall be redirected as | 3 |
| provided in Section 8n of this Act.
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| (b) This Section does not apply to: (i) the Ticket For The | 5 |
| Cure Fund; (ii) any fund established under the Community Senior | 6 |
| Services and Resources Act; or (iii) on or after January 1, | 7 |
| 2006 (the effective date of Public Act 94-511), the Child Labor | 8 |
| and Day and Temporary Labor Enforcement Fund. | 9 |
| (c) This Section does not apply to the Demutualization | 10 |
| Trust Fund established under the Uniform Disposition of | 11 |
| Unclaimed Property Act.
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| (d) This Section does not apply to moneys set aside in the | 13 |
| Illinois State Podiatric Disciplinary Fund for podiatric | 14 |
| scholarships and residency programs under the Podiatric | 15 |
| Scholarship and Residency Act. | 16 |
| (e) Subsection (a) does not apply to, and no transfer may | 17 |
| be made under this Section from, the Pension Stabilization | 18 |
| Fund.
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| (Source: P.A. 93-32, eff. 6-20-03; 93-659, eff. 2-3-04; 93-674, | 20 |
| eff. 6-10-04; 93-714, eff. 7-12-04; 93-801, eff. 7-22-04; | 21 |
| 93-839, eff. 7-30-04; 93-1054, eff. 11-18-04; 93-1067, eff. | 22 |
| 1-15-05; 94-91, eff. 7-1-05; 94-120, eff. 7-6-05; 94-511, eff. | 23 |
| 1-1-06; 94-535, eff. 8-10-05; 94-639, eff. 8-22-05; 94-645, | 24 |
| eff. 8-22-05; 94-648, eff. 1-1-06; 94-686, eff. 11-2-05; | 25 |
| 94-691, eff. 11-2-05; 94-726, eff. 1-20-06; 94-773, eff. | 26 |
| 5-18-06; 94-774, eff. 5-19-06; 94-804, eff. 5-26-06; 94-839, |
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| eff. 6-6-06; revised 6-19-06.)
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| Section 15. The Phenylketonuria Testing Act is amended by | 3 |
| changing Sections 0.01 and 2 as follows:
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| (410 ILCS 240/0.01) (from Ch. 111 1/2, par. 4902.9)
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| Sec. 0.01. Short title. This Act may be cited as the
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| Newborn Metabolic Screening
Phenylketonuria Testing Act.
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| (Source: P.A. 86-1324.)
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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 | 10 |
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provisions of this Act and shall:
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| (a) Institute and carry on an intensive educational program | 12 |
| among
physicians, hospitals, public health nurses and the | 13 |
| public concerning
the diseases phenylketonuria, | 14 |
| hypothyroidism, galactosemia and other
metabolic diseases. | 15 |
| This
educational program shall include information about the | 16 |
| nature of the
diseases and examinations for the detection of | 17 |
| the diseases in early
infancy in order that measures may be | 18 |
| taken to prevent the mental
retardation resulting from the | 19 |
| 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, | 22 |
| endocrine, or
other metabolic disorders, including | 23 |
| phenylketonuria, galactosemia,
hypothyroidism, congenital |
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| adrenal hyperplasia, biotinidase deficiency,
and sickling | 2 |
| disorders, as well as other amino acid disorders, organic
acid | 3 |
| disorders, fatty acid oxidation disorders, and other | 4 |
| abnormalities
detectable through the use of a tandem mass | 5 |
| spectrometer. If by July 1,
2002, the Department is unable to | 6 |
| provide expanded screening using the
State Laboratory, it shall | 7 |
| temporarily provide such screening
through an accredited | 8 |
| laboratory selected by the Department until the
Department has | 9 |
| the capacity to provide screening through the State
Laboratory. | 10 |
| If expanded screening is provided on a temporary basis
through | 11 |
| an accredited laboratory, the Department shall substitute the | 12 |
| fee
charged by the accredited laboratory, plus a 5% surcharge | 13 |
| for
documentation and handling, for the fee authorized in | 14 |
| subsection (e) of
this Section.
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| (a-6) In accordance with the timetable specified in this | 16 |
| subsection, provide all newborns with expanded screening tests | 17 |
| for the presence of certain Lysosomal Storage Disorders known | 18 |
| as Krabbe, Pompe, Gaucher, Fabry, and Niemann-Pick. The testing | 19 |
| shall begin within 6 months following the occurrence of all of | 20 |
| the following: | 21 |
| (i) the registration with the federal Food and Drug | 22 |
| Administration of the necessary reagents; | 23 |
| (ii) the availability of the necessary reagents from | 24 |
| the Centers for Disease Control and Prevention; | 25 |
| (iii) the availability of quality assurance testing | 26 |
| methodology for these processes; and |
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| (iv) the acquisition and installment by the Department | 2 |
| of the equipment necessary to implement the expanded | 3 |
| screening tests. | 4 |
| It is the goal of this amendatory Act of the 95th General | 5 |
| Assembly that the expanded screening for the specified | 6 |
| Lysosomal Storage Disorders begins within 3 years after the | 7 |
| effective date of this Act. The Department is authorized to | 8 |
| implement an additional fee for the screening prior to | 9 |
| beginning the testing in order to accumulate the resources for | 10 |
| start-up and other costs associated with implementation of the | 11 |
| screening and thereafter to support the costs associated with | 12 |
| screening and follow-up programs for the specified Lysosomal | 13 |
| Storage Disorders.
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| (b) Maintain a registry of cases including information of | 15 |
| importance
for the purpose of follow-up services to prevent | 16 |
| mental retardation.
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| (c) Supply the necessary metabolic treatment formulas
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| product where practicable for
diagnosed cases of amino acid | 19 |
| metabolism disorders, including phenylketonuria, organic acid | 20 |
| disorders, and fatty acid oxidation disorders for as long as | 21 |
| medically indicated, when the product is
not available through | 22 |
| other State agencies.
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| (d) Arrange for or provide public health nursing, nutrition | 24 |
| and
social services and clinical consultation as indicated.
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| (e) Require that all specimens collected pursuant to this | 26 |
| Act or the rules
and regulations promulgated hereunder be |
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| 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 levy | 4 |
| fees
according to such structure to cover the cost of providing | 5 |
| this testing
service. Fees collected from the provision of this | 6 |
| testing service shall
be placed in a special fund in the State | 7 |
| Treasury, hereafter known as the
Metabolic Screening and | 8 |
| Treatment Fund. Other State and federal funds for
expenses | 9 |
| related to metabolic screening, follow-up and treatment | 10 |
| programs
may also be placed in such Fund. Moneys shall be | 11 |
| appropriated from such
Fund to the Department of Public Health | 12 |
| solely for the purposes of providing
metabolic screening, | 13 |
| follow-up and treatment programs. Nothing in this
Act shall be | 14 |
| construed to prohibit any licensed medical facility from
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| collecting
additional specimens for testing for metabolic or | 16 |
| neonatal diseases or any
other diseases or conditions, as it | 17 |
| deems fit. Any person
violating the provisions of this | 18 |
| subsection (e) is guilty of a petty offense.
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| (Source: P.A. 92-701, eff. 7-19-02.)
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| Section 99. Effective date. This Act takes effect upon | 21 |
| becoming law.
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