State of Illinois
92nd General Assembly

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[ Introduced ][ Engrossed ][ House Amendment 001 ]


HB5870 Enrolled                               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 Enrolled             -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 Enrolled             -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.

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