Bill Text: IA HF2539 | 2021-2022 | 89th General Assembly | Introduced
Bill Title: A bill for an act relating to the newborn screening.(Formerly HSB 690.)
Spectrum: Committee Bill
Status: (Introduced - Dead) 2022-03-10 - Withdrawn. H.J. 542. [HF2539 Detail]
Download: Iowa-2021-HF2539-Introduced.html
House
File
2539
-
Introduced
HOUSE
FILE
2539
BY
COMMITTEE
ON
HUMAN
RESOURCES
(SUCCESSOR
TO
HSB
690)
(COMPANION
TO
SF
2345
BY
COMMITTEE
ON
HUMAN
RESOURCES)
A
BILL
FOR
An
Act
relating
to
the
newborn
screening.
1
BE
IT
ENACTED
BY
THE
GENERAL
ASSEMBLY
OF
THE
STATE
OF
IOWA:
2
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2539
Section
1.
Section
136A.2,
Code
2022,
is
amended
by
adding
1
the
following
new
subsection:
2
NEW
SUBSECTION
.
1A.
“Congenital
and
inherited
disorders
3
advisory
committee”
or
“advisory
committee”
means
the
congenital
4
and
inherited
disorders
advisory
committee
created
in
this
5
chapter.
6
Sec.
2.
NEW
SECTION
.
136A.3A
Congenital
and
inherited
7
disorders
advisory
committee
established
——
process
for
addition
8
of
conditions
to
newborn
screening.
9
1.
A
congenital
and
inherited
disorders
advisory
committee
10
is
established
to
assist
the
center
for
congenital
and
11
inherited
disorders
and
the
department
in
the
development
of
12
programs
that
ensure
the
availability
and
access
to
quality
13
genetic
and
genomic
health
care
services
for
all
Iowans.
14
2.
The
members
of
the
advisory
committee
shall
be
appointed
15
by
the
director
and
shall
include
persons
with
relevant
16
expertise
and
interest
including
parent
representatives.
17
3.
The
advisory
committee
shall
assist
the
center
for
18
congenital
and
inherited
disorders
and
the
department
in
19
designating
the
conditions
to
be
included
in
the
newborn
20
screening
and
in
regularly
evaluating
the
effectiveness
and
21
appropriateness
of
the
newborn
screening.
22
4.
a.
Beginning
July
1,
2022,
the
advisory
committee
shall
23
ensure
that
all
conditions
included
in
the
federal
recommended
24
uniform
screening
panel
as
of
January
1,
2022,
are
included
in
25
the
newborn
screening.
26
b.
Within
twelve
months
of
the
addition
of
a
new
condition
27
to
the
federal
recommended
uniform
screening
panel,
the
28
advisory
committee
shall
consider
and
make
a
recommendation
29
to
the
department
regarding
inclusion
of
the
new
condition
in
30
the
newborn
screening,
including
the
current
newborn
screening
31
capacity
to
screen
for
the
new
condition
and
the
resources
32
necessary
to
screen
for
the
new
condition
going
forward.
33
If
the
advisory
committee
recommends
inclusion
of
a
new
34
condition,
the
department
shall
include
the
new
condition
in
35
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2539
the
newborn
screening
within
eighteen
months
of
receipt
of
the
1
recommendation.
2
5.
The
department
shall
submit
a
status
report
to
the
3
general
assembly,
annually,
by
December
31,
regarding
all
of
4
the
following:
5
a.
The
current
conditions
included
in
the
newborn
screening.
6
b.
Any
new
conditions
currently
under
consideration
or
7
recommended
by
the
advisory
committee
for
inclusion
in
the
8
newborn
screening.
9
c.
Any
new
conditions
considered
but
not
recommended
by
the
10
advisory
committee
in
the
prior
twelve-month
period
and
the
11
reason
for
not
recommending
any
such
conditions.
12
d.
Any
departmental
request
for
additional
program
capacity
13
or
resources
necessitated
by
the
inclusion
of
a
recommended
new
14
condition
in
the
newborn
screening.
15
e.
Any
delay
and
the
reason
for
the
delay
by
the
advisory
16
committee
in
complying
with
the
specified
twelve-month
time
17
frame
in
considering
or
recommending
the
inclusion
of
a
new
18
condition
in
the
newborn
screening
to
the
department.
19
f.
Any
delay
and
the
reason
for
the
delay
by
the
department
20
in
complying
with
the
specified
eighteen-month
time
frame
in
21
including
a
new
condition
in
the
newborn
screening
following
22
receipt
of
a
recommendation
from
the
advisory
committee
23
recommending
the
inclusion
of
such
condition.
24
6.
The
state
hygienic
laboratory
shall
establish
the
25
newborn
screening
fee
schedule
in
a
manner
sufficient
to
26
support
the
newborn
screening
system
of
care
including
27
laboratory
screening
costs,
short-term
and
long-term
follow-up
28
program
costs,
the
newborn
screening
developmental
fund,
and
29
the
cost
of
the
department’s
newborn
screening
data
system.
30
Sec.
3.
Section
136A.5,
Code
2022,
is
amended
to
read
as
31
follows:
32
136A.5
Newborn
metabolic
screening.
33
1.
All
newborns
born
in
this
state
shall
be
screened
for
34
congenital
and
inherited
disorders
in
accordance
with
rules
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adopted
by
the
department.
1
2.
An
attending
health
care
provider
shall
ensure
that
every
2
newborn
under
the
provider’s
care
is
screened
for
congenital
3
and
inherited
disorders
in
accordance
with
rules
adopted
by
the
4
department.
5
3.
This
section
does
not
apply
if
a
parent
objects
to
6
the
screening.
If
a
parent
objects
to
the
screening
of
a
7
newborn,
the
attending
health
care
provider
shall
document
the
8
refusal
in
the
newborn’s
medical
record
and
shall
obtain
a
9
written
refusal
from
the
parent
and
report
the
refusal
to
the
10
department
as
provided
by
rule
of
the
department.
11
Sec.
4.
Section
136A.5A,
subsections
1
and
4,
Code
2022,
are
12
amended
to
read
as
follows:
13
1.
Each
newborn
born
in
this
state
shall
receive
a
critical
14
congenital
heart
disease
screening
by
pulse
oximetry
or
other
15
means
as
determined
by
rule,
in
conjunction
with
the
metabolic
16
newborn
screening
required
pursuant
to
section
136A.5
.
17
4.
Notwithstanding
any
provision
to
the
contrary,
the
18
results
of
each
newborn’s
critical
congenital
heart
disease
19
screening
shall
only
be
reported
in
a
manner
consistent
with
20
the
reporting
of
the
results
of
metabolic
newborn
screenings
21
pursuant
to
section
136A.5
if
funding
is
available
for
22
implementation
of
the
reporting
requirement.
23
EXPLANATION
24
The
inclusion
of
this
explanation
does
not
constitute
agreement
with
25
the
explanation’s
substance
by
the
members
of
the
general
assembly.
26
This
bill
relates
to
newborn
screenings.
27
The
bill
establishes,
in
Code,
the
congenital
and
inherited
28
disorders
advisory
committee
(advisory
committee),
which
29
currently
is
established
in
administrative
rules.
The
bill
30
provides,
as
is
provided
in
administrative
rules,
that
the
31
advisory
committee
is
established
to
assist
the
center
for
32
congenital
and
inherited
disorders
(center)
and
the
department
33
of
public
health
(DPH)
in
matters
relating
to
genetic
34
and
genomic
health
care
services
for
all
Iowans,
that
the
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members
of
the
advisory
committee
shall
be
appointed
by
the
1
director
of
public
health,
that
the
members
shall
include
2
persons
with
relevant
expertise
and
interest
including
parent
3
representatives,
and
that
one
of
the
duties
of
the
advisory
4
committee
is
to
assist
the
center
and
DPH
in
designating
the
5
conditions
to
be
included
in
the
newborn
screening
and
in
6
regularly
evaluating
the
effectiveness
and
appropriateness
of
7
the
newborn
screening.
8
The
bill
specifically
requires
that
beginning
July
1,
9
2022,
the
advisory
committee
shall
ensure
that
all
conditions
10
included
in
the
federal
recommended
uniform
screening
panel
as
11
of
January
1,
2022,
are
included
in
the
newborn
screening.
The
12
bill
requires
that
within
12
months
of
the
addition
of
a
new
13
condition
to
the
federal
recommended
uniform
screening
panel,
14
the
advisory
committee
shall
consider
and
make
a
recommendation
15
to
DPH
regarding
inclusion
of
the
new
condition
in
the
newborn
16
screening,
including
current
newborn
screening
capacity
to
17
screen
for
the
new
condition
and
the
resources
necessary
to
18
screen
for
the
new
condition
going
forward.
If
the
advisory
19
committee
recommends
inclusion
of
a
new
condition,
DPH
shall
20
ensure
that
the
new
condition
is
included
in
the
newborn
21
screening
within
18
months
of
receipt
of
the
recommendation.
22
The
bill
requires
DPH
to
submit
an
annual
status
report
to
23
the
general
assembly
by
December
31,
regarding
the
current
24
conditions
included
in
the
newborn
screening,
any
new
25
conditions
currently
under
consideration
or
recommended
by
the
26
advisory
committee
for
inclusion
in
the
newborn
screening,
any
27
new
conditions
considered
but
not
recommended
by
the
advisory
28
committee
in
the
prior
12-month
period
and
the
reason
for
not
29
recommending
any
such
conditions,
any
departmental
request
for
30
additional
newborn
screening
program
capacity
or
resources
31
necessitated
by
the
inclusion
of
a
recommended
new
condition
32
in
the
newborn
screening,
and
any
delay
and
the
reason
for
33
the
delay
by
the
advisory
committee
or
DPH
in
complying
with
34
the
specified
time
frames
for
considering
and
recommending
or
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adding
a
new
condition
to
the
newborn
screening.
1
The
bill
requires
the
state
hygienic
laboratory
to
establish
2
the
newborn
screening
fee
schedule
in
a
manner
sufficient
to
3
support
the
newborn
screening
system
of
care.
4
The
bill
also
changes
references
to
“newborn
metabolic
5
screening”
or
“metabolic
newborn
screening”
to
“newborn
6
screening”.
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