State of Illinois
92nd General Assembly
Legislation

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92_HB5870ham001

 










                                             LRB9213311DHpcam

 1                    AMENDMENT TO HOUSE BILL 5870

 2        AMENDMENT NO.     .  Amend House Bill 5870  by  replacing
 3    everything after the enacting clause with the following:

 4        "Section  5.  The  Phenylketonuria Testing Act is amended
 5    by 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.
 
                            -2-              LRB9213311DHpcam
 1        (410 ILCS 240/2) (from Ch. 111 1/2, par. 4904)
 2        Sec. 2.  The Department of Public Health shall administer
 3    the provisions of this Act and shall:
 4        (a)  Institute and  carry  on  an  intensive  educational
 5    program among physicians, hospitals, public health nurses and
 6    the   public   concerning   the   diseases   phenylketonuria,
 7    hypothyroidism,  galactosemia  and  other metabolic diseases.
 8    This educational program shall include information about  the
 9    nature  of the diseases and examinations for the detection of
10    the diseases in early infancy in order that measures  may  be
11    taken  to  prevent  the mental retardation resulting from the
12    diseases.
13        (a-5)  Beginning July 1, 2002, provide all newborns  with
14    expanded   screening  tests  for  the  presence  of  genetic,
15    endocrine,   or   other   metabolic   disorders,    including
16    phenylketonuria,   galactosemia,  hypothyroidism,  congenital
17    adrenal hyperplasia,  biotinidase  deficiency,  and  sickling
18    disorders,  as  well  as  other amino acid disorders, organic
19    acid disorders, fatty acid  oxidation  disorders,  and  other
20    abnormalities  detectable  through  the  use of a tandem mass
21    spectrometer. If by July 1, 2002, the Department is unable to
22    provide expanded screening using  the  State  Laboratory,  it
23    shall   temporarily   provide   such   screening  through  an
24    accredited laboratory selected by the  Department  until  the
25    Department  has the capacity to provide screening through the
26    State Laboratory. If expanded  screening  is  provided  on  a
27    temporary   basis   through  an  accredited  laboratory,  the
28    Department shall substitute the fee charged by the accredited
29    laboratory,  plus  a  5%  surcharge  for  documentation   and
30    handling,  for  the  fee authorized in subsection (e) of this
31    Section.
32        (b)  Maintain a registry of cases  including  information
33    of  importance  for  the  purpose  of  follow-up  services to
34    prevent mental retardation.
 
                            -3-              LRB9213311DHpcam
 1        (c)  Supply  the  necessary   treatment   product   where
 2    practicable  for  diagnosed  cases  for  as long as medically
 3    indicated, when the product is not  available  through  other
 4    State agencies.
 5        (d)  Arrange   for  or  provide  public  health  nursing,
 6    nutrition and social services and  clinical  consultation  as
 7    indicated.
 8        (e)  Require  that  all  specimens  collected pursuant to
 9    this Act or the rules and regulations  promulgated  hereunder
10    be  submitted for testing to the nearest Department of Public
11    Health laboratory designated to  perform  such  tests.    The
12    Department  may  develop  a  reasonable fee structure and may
13    levy fees according to such structure to cover  the  cost  of
14    providing  this  testing  service.   Fees  collected from the
15    provision of this  testing  service  shall  be  placed  in  a
16    special  fund  in  the State Treasury, hereafter known as the
17    Metabolic Screening and  Treatment  Fund.   Other  State  and
18    federal  funds  for  expenses related to metabolic screening,
19    follow-up and treatment programs may also be placed  in  such
20    Fund.   Moneys  shall  be  appropriated from such Fund to the
21    Department of  Public  Health  solely  for  the  purposes  of
22    providing   metabolic   screening,  follow-up  and  treatment
23    programs.  Nothing in this Act shall be construed to prohibit
24    any licensed  medical  facility  from  collecting  additional
25    specimens  for  testing for metabolic or neonatal diseases or
26    any other diseases or conditions, as it deems fit. Any person
27    violating the provisions of this subsection (e) is guilty  of
28    a petty offense.
29    (Source: P.A. 83-87.)

30        Section  99.  Effective date.  This Act takes effect upon
31    becoming law.".

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