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: (Failed) 2019-01-08 - Session Sine Die [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
HB4142 LRB100 14281 MJP 29055 b
AN ACT concerning health.
Be it enacted by the People of the State of Illinois,
represented in the General Assembly:
Section 5. The Newborn Metabolic Screening Act is amended
by adding Section 3.35 as follows:
(410 ILCS 240/3.35 new)
Sec. 3.35. Spinal muscular atrophy. In accordance with the
timetable specified in this Section, the Department shall
provide all newborns and infants within 12 months of birth with
screening tests for the presence of spinal muscular atrophy.
The testing shall begin within 12 months following the
occurrence of all of the following:
(1) the establishment and verification of relevant and
appropriate performance specifications as defined under
the federal Clinical Laboratory Improvement Amendments and
regulations thereunder for Federal Drug
Administration-cleared or in-house developed methods,
performed under an institutional review board approved
protocol, if required;
(2) the availability of quality assurance testing and
comparative threshold values for the spinal muscular
atrophy screening test;
(3) the acquisition and installment by the Department

HB4142 - 2 - LRB100 14281 MJP 29055 b
of the equipment necessary to implement the initial pilot
and statewide volume of screening tests for spinal muscular
atrophy;
(4) the establishment of precise threshold values
ensuring defined spinal muscular atrophy identification
for the screening test;
(5) the authentication of pilot testing achieving each
milestone described in items (1) through (4) of this
Section for the spinal muscular atrophy screening test; and
(6) the authentication of achieving the potential of
high throughput standards for statewide volume of the
spinal muscular atrophy screening test concomitant with
each milestone described in items (1) through (4) of this
Section.
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.