Bill Text: IL HB4896 | 2009-2010 | 96th General Assembly | Engrossed

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Bill Title: Amends the Newborn Metabolic Screening Act. Provides that the Metabolic Screening and Treatment Fund is not subject to sweeps, administrative charges, or charge-backs. Effective immediately.

Spectrum: Partisan Bill (Republican 4-0)

Status: (Engrossed - Dead) 2010-04-23 - Rule 3-9(a) / Re-referred to Assignments [HB4896 Detail]

Download: Illinois-2009-HB4896-Engrossed.html

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AN ACT concerning State government.
Be it enacted by the People of the State of Illinois,
represented in the General Assembly:
Section 5. The Newborn Metabolic Screening Act is amended
by changing Section 2 as follows:
(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
diseases.
(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

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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

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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
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

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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. The Metabolic Screening and
Treatment Fund is not subject to administrative charges, or
charge-backs, including but not limited to those authorized
under Section 8h of the State Finance Act. 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. 95-695, eff. 11-5-07.)
Section 99. Effective date. This Act takes effect upon
becoming law.