97TH GENERAL ASSEMBLY
State of Illinois
2011 and 2012
SB1761

 

Introduced 2/9/2011, by Sen. Dale A. Righter

 

SYNOPSIS AS INTRODUCED:
 
410 ILCS 240/2  from Ch. 111 1/2, par. 4904

    Amends the Newborn Metabolic Screening Act. Provides that the Department of Public Health shall provide newborns with expanded screening tests for the presence of Mucopolysaccharidosis I (Hurler disease), Mucopolysaccharidosis II (Hunters disease), and Severe Combined Immunodeficiency Syndrome (SCIDS). Provides that if the Department is unable to provide expanded screening for SCIDS using the State Laboratory within 180 days after the effective date of the amendatory Act, then the Department shall temporarily provide the screening through an accredited laboratory selected by the Department until the Department has the capacity to provide screening through the State Laboratory. Permits the Department to substitute the fee charged by the accredited laboratory, plus a 5% surcharge for documentation and handling for the fee authorized if expanded screening is provided on a temporary basis through an accredited laboratory. Effective immediately.


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FISCAL NOTE ACT MAY APPLY

 

 

A BILL FOR

 

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1    AN ACT concerning public health.
 
2    Be it enacted by the People of the State of Illinois,
3represented in the General Assembly:
 
4    Section 5. The Newborn Metabolic Screening Act is amended
5by changing Section 2 as follows:
 
6    (410 ILCS 240/2)  (from Ch. 111 1/2, par. 4904)
7    Sec. 2. The Department of Public Health shall administer
8the provisions of this Act and shall:
9    (a) Institute and carry on an intensive educational program
10among physicians, hospitals, public health nurses and the
11public concerning the diseases phenylketonuria,
12hypothyroidism, galactosemia and other metabolic diseases.
13This educational program shall include information about the
14nature of the diseases and examinations for the detection of
15the diseases in early infancy in order that measures may be
16taken to prevent the mental retardation resulting from the
17diseases.
18    (a-5) Beginning July 1, 2002, provide all newborns with
19expanded screening tests for the presence of genetic,
20endocrine, or other metabolic disorders, including
21phenylketonuria, galactosemia, hypothyroidism, congenital
22adrenal hyperplasia, biotinidase deficiency, and sickling
23disorders, as well as other amino acid disorders, organic acid

 

 

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1disorders, fatty acid oxidation disorders, and other
2abnormalities detectable through the use of a tandem mass
3spectrometer. If by July 1, 2002, the Department is unable to
4provide expanded screening using the State Laboratory, it shall
5temporarily provide such screening through an accredited
6laboratory selected by the Department until the Department has
7the capacity to provide screening through the State Laboratory.
8If expanded screening is provided on a temporary basis through
9an accredited laboratory, the Department shall substitute the
10fee charged by the accredited laboratory, plus a 5% surcharge
11for documentation and handling, for the fee authorized in
12subsection (e) of this Section.
13    (a-6) In accordance with the timetable specified in this
14subsection, provide all newborns with expanded screening tests
15for the presence of certain Lysosomal Storage Disorders known
16as Krabbe, Pompe, Gaucher, Fabry, and Niemann-Pick. The testing
17shall begin within 6 months following the occurrence of all of
18the following:
19        (i) the registration with the federal Food and Drug
20    Administration of the necessary reagents;
21        (ii) the availability of the necessary reagents from
22    the Centers for Disease Control and Prevention;
23        (iii) the availability of quality assurance testing
24    methodology for these processes; and
25        (iv) the acquisition and installment by the Department
26    of the equipment necessary to implement the expanded

 

 

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1    screening tests.
2    It is the goal of this amendatory Act of the 95th General
3Assembly that the expanded screening for the specified
4Lysosomal Storage Disorders begins within 3 years after the
5effective date of this Act. The Department is authorized to
6implement an additional fee for the screening prior to
7beginning the testing in order to accumulate the resources for
8start-up and other costs associated with implementation of the
9screening and thereafter to support the costs associated with
10screening and follow-up programs for the specified Lysosomal
11Storage Disorders.
12    (a-10) Beginning 30 days after the effective date of this
13amendatory Act of the 97th General Assembly, provide newborns
14with expanded screening tests for the presence of
15Mucopolysaccharidosis I (Hurler disease) and
16Mucopolysaccharidosis II (Hunters disease).
17    (a-15) Beginning 180 days after the effective date of this
18amendatory Act of the 97th General Assembly, provide all
19newborns with expanded screening tests for the presence of
20Severe Combined Immunodeficiency Syndrome (SCIDS). If the
21Department is unable to provide expanded screening for SCIDS
22using the State Laboratory within 180 days after the effective
23date of this amendatory Act, then it shall temporarily provide
24the screening through an accredited laboratory selected by the
25Department until the Department has the capacity to provide
26screening through the State Laboratory. If expanded screening

 

 

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1is provided on a temporary basis through an accredited
2laboratory, then the Department shall substitute the fee
3charged by the accredited laboratory, plus a 5% surcharge for
4documentation and handling, for the fee authorized in
5subsection (e) of this Section.
6    (b) Maintain a registry of cases including information of
7importance for the purpose of follow-up services to prevent
8mental retardation.
9    (c) Supply the necessary metabolic treatment formulas
10where practicable for diagnosed cases of amino acid metabolism
11disorders, including phenylketonuria, organic acid disorders,
12and fatty acid oxidation disorders for as long as medically
13indicated, when the product is not available through other
14State agencies.
15    (d) Arrange for or provide public health nursing, nutrition
16and social services and clinical consultation as indicated.
17    (e) Require that all specimens collected pursuant to this
18Act or the rules and regulations promulgated hereunder be
19submitted for testing to the nearest Department of Public
20Health laboratory designated to perform such tests. The
21Department may develop a reasonable fee structure and may levy
22fees according to such structure to cover the cost of providing
23this testing service. Fees collected from the provision of this
24testing service shall be placed in a special fund in the State
25Treasury, hereafter known as the Metabolic Screening and
26Treatment Fund. Other State and federal funds for expenses

 

 

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1related to metabolic screening, follow-up and treatment
2programs may also be placed in such Fund. Moneys shall be
3appropriated from such Fund to the Department of Public Health
4solely for the purposes of providing metabolic screening,
5follow-up and treatment programs. Nothing in this Act shall be
6construed to prohibit any licensed medical facility from
7collecting additional specimens for testing for metabolic or
8neonatal diseases or any other diseases or conditions, as it
9deems fit. Any person violating the provisions of this
10subsection (e) is guilty of a petty offense.
11(Source: P.A. 95-695, eff. 11-5-07.)
 
12    Section 99. Effective date. This Act takes effect upon
13becoming law.