100TH GENERAL ASSEMBLY
State of Illinois
2017 and 2018
HB4142
 
Introduced 10/26/2017, by Rep. Mark Batinick - Daniel Swanson - Laura Fine - Silvana Tabares
 
SYNOPSIS AS INTRODUCED:
 

 
410 ILCS 240/3.35 new

     Amends the Newborn Metabolic Screening Act. Requires the Department of Public Health to provide all newborns and infants within 12 months of birth with screening tests for the presence of spinal muscular atrophy. Provides that the testing shall begin within 12 months of the occurrence of specified events. Provides that 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 spinal muscular atrophy.
  


LRB100 14281 MJP 29055 b

FISCAL NOTE ACT MAY APPLY
 
 
A BILL FOR
 

  
HB4142LRB100 14281 MJP 29055 b


  
1    AN ACT concerning 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 adding Section 3.35 as follows:
 
6    (410 ILCS 240/3.35 new)
7    Sec. 3.35. Spinal muscular atrophy. In accordance with the 
8timetable specified in this Section, the Department shall 
9provide all newborns and infants within 12 months of birth with 
10screening tests for the presence of spinal muscular atrophy. 
11The testing shall begin within 12 months following the 
12occurrence of all of the following:
13        (1) the establishment and verification of relevant and 
14    appropriate performance specifications as defined under 
15    the federal Clinical Laboratory Improvement Amendments and 
16    regulations thereunder for Federal Drug 
17    Administration-cleared or in-house developed methods, 
18    performed under an institutional review board approved 
19    protocol, if required;
20        (2) the availability of quality assurance testing and 
21    comparative threshold values for the spinal muscular 
22    atrophy screening test;
23        (3) the acquisition and installment by the Department 
 
 
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1    of the equipment necessary to implement the initial pilot 
2    and statewide volume of screening tests for spinal muscular 
3    atrophy;
4        (4) the establishment of precise threshold values 
5    ensuring defined spinal muscular atrophy identification 
6    for the screening test;
7        (5) the authentication of pilot testing achieving each 
8    milestone described in items (1) through (4) of this 
9    Section for the  spinal muscular atrophy screening test; and
10        (6) the authentication of achieving the potential of 
11    high throughput standards for statewide volume of the 
12    spinal muscular atrophy screening test concomitant with 
13    each milestone described in items (1) through (4) of this 
14    Section.
15    The Department is authorized to implement an additional fee 
16for the screening prior to beginning the testing in order to 
17accumulate the resources for start-up and other costs 
18associated with implementation of the screening and thereafter 
19to support the costs associated with screening and follow-up 
20programs for spinal muscular atrophy.