State of Illinois
92nd General Assembly
Legislation

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92_HB5869

 
                                              LRB9213313DJmbB

 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        "Expanded  screening" means screening for all genetic and
 9    metabolic disorders, including but not limited to amino  acid
10    disorders,  organic  acid  disorders,  fatty  acid  oxidation
11    disorders,  and  other  abnormal profiles, in newborn infants
12    that can be  detected  through  the  use  of  a  tandem  mass
13    spectrometer.
14        "Tandem mass spectrometer" means an analytical instrument
15    used  to  detect  numerous genetic and metabolic disorders at
16    one time.

17        (410 ILCS 240/2) (from Ch. 111 1/2, par. 4904)
18        Sec. 2.  The Department of Public Health shall administer
19    the provisions of this Act and shall:
20        (a)  Institute and  carry  on  an  intensive  educational
21    program among physicians, hospitals, public health nurses and
22    the   public   concerning   the   diseases   phenylketonuria,
23    hypothyroidism,  galactosemia  and  other metabolic diseases.
24    This educational program shall include information about  the
25    nature  of the diseases and examinations for the detection of
26    the diseases in early infancy in order that measures  may  be
27    taken  to  prevent  the mental retardation resulting from the
28    diseases.
29        (a-5)  Require  the  physician  or  other   health   care
30    provider  attending  a pregnant woman at the diagnosis of her
 
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 1    pregnancy to (i) notify the woman  that  there  are  expanded
 2    screening  tests for metabolic and genetic disorders that may
 3    be given to her child in addition to those tests required  by
 4    the  State  and (ii) provide that information to the woman in
 5    writing within 7 days after the diagnosis of the pregnancy.
 6        The Department shall also require the physician or  other
 7    health care provider attending a newborn infant to (A) notify
 8    the  infant's  mother that there are expanded screening tests
 9    for metabolic and genetic disorders that may be given to  her
10    child  in  addition  to those tests required by the State and
11    (B) provide that  information  to  the  infant's  mother,  in
12    writing, within 24 hours following the infant's birth.
13        By  May  1,  2002,  the Department of Public Health shall
14    develop and distribute to physicians and  other  health  care
15    providers  the  written  informational  materials  concerning
16    expanded   screening   tests   described   in  the  preceding
17    paragraph. The physicians and  other  health  care  providers
18    shall use the materials to provide the written information to
19    pregnant   women  as  required  under  this  subsection.  The
20    information provided to such women must include, but need not
21    be limited to, the following:
22             (1)  The benefits of the expanded screening.
23             (2)  The disorders  that  are  included  within  the
24        expanded screening.
25             (3)  The  time  at  which  the expanded screening is
26        performed on a newborn infant.
27             (4)  The manner in which the expanded  screening  is
28        performed, and information on follow-up procedures.
29        This   subsection   shall  become  inoperative  upon  the
30    Department's full  implementation  of  a  statewide  expanded
31    screening program that is testing all newborn infants for all
32    detectable genetic and metabolic disorders.
33        (b)  Maintain  a  registry of cases including information
34    of importance  for  the  purpose  of  follow-up  services  to
 
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 1    prevent mental retardation.
 2        (c)  Supply   the   necessary   treatment  product  where
 3    practicable for diagnosed cases  for  as  long  as  medically
 4    indicated,  when  the  product is not available through other
 5    State agencies.
 6        (d)  Arrange  for  or  provide  public  health   nursing,
 7    nutrition  and  social  services and clinical consultation as
 8    indicated.
 9        (e)  Require that all  specimens  collected  pursuant  to
10    this  Act  or the rules and regulations promulgated hereunder
11    be submitted for testing to the nearest Department of  Public
12    Health  laboratory  designated  to  perform  such tests.  The
13    Department may develop a reasonable  fee  structure  and  may
14    levy  fees  according  to such structure to cover the cost of
15    providing this testing  service.   Fees  collected  from  the
16    provision  of  this  testing  service  shall  be  placed in a
17    special fund in the State Treasury, hereafter  known  as  the
18    Metabolic  Screening  and  Treatment  Fund.   Other State and
19    federal funds for expenses related  to  metabolic  screening,
20    follow-up  and  treatment programs may also be placed in such
21    Fund.  Moneys shall be appropriated from  such  Fund  to  the
22    Department  of  Public  Health  solely  for  the  purposes of
23    providing  metabolic  screening,  follow-up   and   treatment
24    programs.  Nothing in this Act shall be construed to prohibit
25    any  licensed  medical  facility  from  collecting additional
26    specimens for testing for metabolic or neonatal  diseases  or
27    any other diseases or conditions, as it deems fit. Any person
28    violating  the provisions of this subsection (e) is guilty of
29    a petty offense.
30    (Source: P.A. 83-87.)

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

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