Illinois General Assembly - Full Text of Public Act 095-0695
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Public Act 095-0695




Public Act 095-0695
SB1566 Enrolled LRB095 10699 KBJ 30931 b

    AN ACT concerning public health.
    Be it enacted by the People of the State of Illinois,
represented in the General Assembly:
    Section 1. Short title. This Act may be cited as the
Genetic and Metabolic Diseases Advisory Committee Act.
    Section 5. Genetic and Metabolic Diseases Advisory
    (a) The Director of Public Health shall create the Genetic
and Metabolic Diseases Advisory Committee to advise the
Department of Public Health regarding issues relevant to
newborn screenings of metabolic diseases.
    (b) The purposes of Metabolic Diseases Advisory Committee
are all of the following:
        (1) Advise the Department regarding issues relevant to
    its Genetics Program.
        (2) Advise the Department regarding optimal laboratory
    methodologies for screening of the targeted conditions.
        (3) Recommend to the Department consultants who are
    qualified to diagnose a condition detected by screening,
    provide management of care, and genetic counseling for the
        (4) Monitor the incidence of each condition for which
    newborn screening is done, evaluate the effects of
    treatment and genetic counseling, and provide advice on
    disorders to be included in newborn screening panel.
        (5) Advise the Department on educational programs for
    professionals and the general public.
        (6) Advise the Department on new developments and areas
    of interest in relation to the Genetics Program.
        (7) Any other matter deemed appropriate by the
    Committee and the Director.
    (c) The Committee shall consist of 20 members appointed by
the Director of Public Health. Membership shall include
physicians, geneticists, nurses, nutritionists, and other
allied health professionals, as well as patients and parents.
Ex-officio members may be appointed, but shall not have voting
    Section 10. The State Finance Act is amended by changing
Section 8h as follows:
    (30 ILCS 105/8h)
    Sec. 8h. Transfers to General Revenue Fund.
    (a) Except as otherwise provided in this Section and
Section 8n of this Act, and (c), (d), or (e), notwithstanding
any other State law to the contrary, the Governor may, through
June 30, 2007, from time to time direct the State Treasurer and
Comptroller to transfer a specified sum from any fund held by
the State Treasurer to the General Revenue Fund in order to
help defray the State's operating costs for the fiscal year.
The total transfer under this Section from any fund in any
fiscal year shall not exceed the lesser of (i) 8% of the
revenues to be deposited into the fund during that fiscal year
or (ii) an amount that leaves a remaining fund balance of 25%
of the July 1 fund balance of that fiscal year. In fiscal year
2005 only, prior to calculating the July 1, 2004 final
balances, the Governor may calculate and direct the State
Treasurer with the Comptroller to transfer additional amounts
determined by applying the formula authorized in Public Act
93-839 to the funds balances on July 1, 2003. No transfer may
be made from a fund under this Section that would have the
effect of reducing the available balance in the fund to an
amount less than the amount remaining unexpended and unreserved
from the total appropriation from that fund estimated to be
expended for that fiscal year. This Section does not apply to
any funds that are restricted by federal law to a specific use,
to any funds in the Motor Fuel Tax Fund, the Intercity
Passenger Rail Fund, the Hospital Provider Fund, the Medicaid
Provider Relief Fund, the Teacher Health Insurance Security
Fund, the Reviewing Court Alternative Dispute Resolution Fund,
the Voters' Guide Fund, the Foreign Language Interpreter Fund,
the Lawyers' Assistance Program Fund, the Supreme Court Federal
Projects Fund, the Supreme Court Special State Projects Fund,
the Supplemental Low-Income Energy Assistance Fund, the Good
Samaritan Energy Trust Fund, the Low-Level Radioactive Waste
Facility Development and Operation Fund, the Horse Racing
Equity Trust Fund, the Metabolic Screening and Treatment Fund,
or the Hospital Basic Services Preservation Fund, or to any
funds to which subsection (f) of Section 20-40 of the Nursing
and Advanced Practice Nursing Act applies. No transfers may be
made under this Section from the Pet Population Control Fund.
Notwithstanding any other provision of this Section, for fiscal
year 2004, the total transfer under this Section from the Road
Fund or the State Construction Account Fund shall not exceed
the lesser of (i) 5% of the revenues to be deposited into the
fund during that fiscal year or (ii) 25% of the beginning
balance in the fund. For fiscal year 2005 through fiscal year
2007, no amounts may be transferred under this Section from the
Road Fund, the State Construction Account Fund, the Criminal
Justice Information Systems Trust Fund, the Wireless Service
Emergency Fund, or the Mandatory Arbitration Fund.
    In determining the available balance in a fund, the
Governor may include receipts, transfers into the fund, and
other resources anticipated to be available in the fund in that
fiscal year.
    The State Treasurer and Comptroller shall transfer the
amounts designated under this Section as soon as may be
practicable after receiving the direction to transfer from the
    (a-5) Transfers directed to be made under this Section on
or before February 28, 2006 that are still pending on May 19,
2006 (the effective date of Public Act 94-774) this amendatory
Act of the 94th General Assembly shall be redirected as
provided in Section 8n of this Act.
    (b) This Section does not apply to: (i) the Ticket For The
Cure Fund; (ii) any fund established under the Community Senior
Services and Resources Act; or (iii) on or after January 1,
2006 (the effective date of Public Act 94-511), the Child Labor
and Day and Temporary Labor Enforcement Fund.
    (c) This Section does not apply to the Demutualization
Trust Fund established under the Uniform Disposition of
Unclaimed Property Act.
    (d) This Section does not apply to moneys set aside in the
Illinois State Podiatric Disciplinary Fund for podiatric
scholarships and residency programs under the Podiatric
Scholarship and Residency Act.
    (e) Subsection (a) does not apply to, and no transfer may
be made under this Section from, the Pension Stabilization
(Source: P.A. 93-32, eff. 6-20-03; 93-659, eff. 2-3-04; 93-674,
eff. 6-10-04; 93-714, eff. 7-12-04; 93-801, eff. 7-22-04;
93-839, eff. 7-30-04; 93-1054, eff. 11-18-04; 93-1067, eff.
1-15-05; 94-91, eff. 7-1-05; 94-120, eff. 7-6-05; 94-511, eff.
1-1-06; 94-535, eff. 8-10-05; 94-639, eff. 8-22-05; 94-645,
eff. 8-22-05; 94-648, eff. 1-1-06; 94-686, eff. 11-2-05;
94-691, eff. 11-2-05; 94-726, eff. 1-20-06; 94-773, eff.
5-18-06; 94-774, eff. 5-19-06; 94-804, eff. 5-26-06; 94-839,
eff. 6-6-06; revised 6-19-06.)
    Section 15. The Phenylketonuria Testing Act is amended by
changing Sections 0.01 and 2 as follows:
    (410 ILCS 240/0.01)  (from Ch. 111 1/2, par. 4902.9)
    Sec. 0.01. Short title. This Act may be cited as the
Newborn Metabolic Screening Phenylketonuria Testing Act.
(Source: P.A. 86-1324.)
    (410 ILCS 240/2)  (from Ch. 111 1/2, par. 4904)
    Sec. 2. The Department of Public Health shall administer
the provisions of this Act and shall:
    (a) Institute and carry on an intensive educational program
among physicians, hospitals, public health nurses and the
public concerning the diseases phenylketonuria,
hypothyroidism, galactosemia and other metabolic diseases.
This educational program shall include information about the
nature of the diseases and examinations for the detection of
the diseases in early infancy in order that measures may be
taken to prevent the mental retardation resulting from the
    (a-5) Beginning July 1, 2002, provide all newborns with
expanded screening tests for the presence of genetic,
endocrine, or other metabolic disorders, including
phenylketonuria, galactosemia, hypothyroidism, congenital
adrenal hyperplasia, biotinidase deficiency, and sickling
disorders, as well as other amino acid disorders, organic acid
disorders, fatty acid oxidation disorders, and other
abnormalities detectable through the use of a tandem mass
spectrometer. If by July 1, 2002, the Department is unable to
provide expanded screening using the State Laboratory, it shall
temporarily provide such screening through an accredited
laboratory selected by the Department until the Department has
the capacity to provide screening through the State Laboratory.
If expanded screening is provided on a temporary basis through
an accredited laboratory, the Department shall substitute the
fee charged by the accredited laboratory, plus a 5% surcharge
for documentation and handling, for the fee authorized in
subsection (e) of this Section.
    (a-6) In accordance with the timetable specified in this
subsection, provide all newborns with expanded screening tests
for the presence of certain Lysosomal Storage Disorders known
as Krabbe, Pompe, Gaucher, Fabry, and Niemann-Pick. The testing
shall begin within 6 months following the occurrence of all of
the following:
        (i) the registration with the federal Food and Drug
    Administration of the necessary reagents;
        (ii) the availability of the necessary reagents from
    the Centers for Disease Control and Prevention;
        (iii) the availability of quality assurance testing
    methodology for these processes; and
        (iv) the acquisition and installment by the Department
    of the equipment necessary to implement the expanded
    screening tests.
    It is the goal of this amendatory Act of the 95th General
Assembly that the expanded screening for the specified
Lysosomal Storage Disorders begins within 3 years after the
effective date of this Act. The Department is authorized to
implement an additional fee for the screening prior to
beginning the testing in order to accumulate the resources for
start-up and other costs associated with implementation of the
screening and thereafter to support the costs associated with
screening and follow-up programs for the specified Lysosomal
Storage Disorders.
    (b) Maintain a registry of cases including information of
importance for the purpose of follow-up services to prevent
mental retardation.
    (c) Supply the necessary metabolic treatment formulas
product where practicable for diagnosed cases of amino acid
metabolism disorders, including phenylketonuria, organic acid
disorders, and fatty acid oxidation disorders for as long as
medically indicated, when the product is not available through
other State agencies.
    (d) Arrange for or provide public health nursing, nutrition
and social services and clinical consultation as indicated.
    (e) Require that all specimens collected pursuant to this
Act or the rules and regulations promulgated hereunder be
submitted for testing to the nearest Department of Public
Health laboratory designated to perform such tests. The
Department may develop a reasonable fee structure and may levy
fees according to such structure to cover the cost of providing
this testing service. Fees collected from the provision of this
testing service shall be placed in a special fund in the State
Treasury, hereafter known as the Metabolic Screening and
Treatment Fund. Other State and federal funds for expenses
related to metabolic screening, follow-up and treatment
programs may also be placed in such Fund. Moneys shall be
appropriated from such Fund to the Department of Public Health
solely for the purposes of providing metabolic screening,
follow-up and treatment programs. Nothing in this Act shall be
construed to prohibit any licensed medical facility from
collecting additional specimens for testing for metabolic or
neonatal diseases or any other diseases or conditions, as it
deems fit. Any person violating the provisions of this
subsection (e) is guilty of a petty offense.
(Source: P.A. 92-701, eff. 7-19-02.)
    Section 99. Effective date. This Act takes effect upon
becoming law.

Effective Date: 11/5/2007