Bill Text: IL HB4142 | 2017-2018 | 100th General Assembly | Introduced


Bill Title: 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.

Spectrum: Bipartisan Bill

Status: (Introduced) 2018-04-27 - Rule 19(a) / Re-referred to Rules Committee [HB4142 Detail]

Download: Illinois-2017-HB4142-Introduced.html


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

HB4142- 2 -LRB100 14281 MJP 29055 b
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.
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