Senate
File
341
-
Introduced
SENATE
FILE
341
BY
LYKAM
A
BILL
FOR
An
Act
relating
to
expansion
of
the
newborn
metabolic
screening
1
to
include
lysosomal
storage
disorders.
2
BE
IT
ENACTED
BY
THE
GENERAL
ASSEMBLY
OF
THE
STATE
OF
IOWA:
3
TLSB
2149XS
(3)
87
pf/nh
S.F.
341
Section
1.
NEW
SECTION
.
136A.5B
Newborn
metabolic
screening
1
——
lysosomal
storage
disorders.
2
1.
The
department
shall
adopt
rules
pursuant
to
section
3
136A.8
to
expand
the
newborn
metabolic
screening
required
under
4
section
136A.5
to
include
screening
for
lysosomal
storage
5
disorders,
including
but
not
limited
to
all
of
the
following:
6
a.
Krabbe
disease.
7
b.
Pompe
disease.
8
c.
Gaucher
disease.
9
d.
Niemann-Pick
disease.
10
e.
Fabry
disease.
11
2.
An
attending
health
care
provider
shall
ensure
that
12
every
newborn
under
the
provider’s
care
receives
the
newborn
13
screening
that
includes
screening
for
lysosomal
storage
14
disorders
in
accordance
with
rules
adopted
by
the
department.
15
3.
a.
In
accordance
with
the
duties
prescribed
in
section
16
136A.3,
the
center
for
congenital
and
inherited
disorders
shall
17
collaborate
with
state
and
local
health
agencies
and
other
18
public
and
private
organizations
to
develop
and
publish
or
19
approve
and
publish
informational
materials
to
educate
and
20
raise
awareness
of
lysosomal
storage
disorders
among
women
who
21
may
become
pregnant,
expectant
parents,
parents
of
newborns,
22
attending
health
care
providers,
and
others,
as
appropriate.
23
b.
An
attending
health
care
provider
shall
provide
to
a
24
pregnant
woman
during
the
first
trimester
of
the
pregnancy,
25
the
informational
materials
published
under
this
subsection.
26
The
center
for
congenital
and
inherited
disorders
shall
make
27
the
informational
materials
available
to
attending
health
care
28
providers
upon
request.
29
c.
The
department
shall
publish
the
informational
materials
30
on
its
internet
site.
31
4.
This
section
does
not
apply
if
a
parent
objects
to
32
the
screening.
If
a
parent
objects
to
the
screening
of
a
33
newborn,
the
attending
health
care
provider
shall
document
the
34
refusal
in
the
newborn’s
medical
record
and
shall
obtain
a
35
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2149XS
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pf/nh
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2
S.F.
341
written
refusal
from
the
parent
and
report
the
refusal
to
the
1
department.
2
EXPLANATION
3
The
inclusion
of
this
explanation
does
not
constitute
agreement
with
4
the
explanation’s
substance
by
the
members
of
the
general
assembly.
5
This
bill
directs
the
department
of
public
health
(DPH)
6
to
adopt
rules
to
expand
the
newborn
metabolic
screening
to
7
include
screening
for
lysosomal
storage
disorders,
including
8
but
not
limited
to
five
such
disorders
as
specified.
9
The
bill
requires
an
attending
health
care
provider
to
10
ensure
that
every
newborn
under
the
provider’s
care
receives
11
the
newborn
screening
that
includes
screening
for
lysosomal
12
storage
disorders;
directs
the
center
for
congenital
and
13
inherited
disorders
to
collaborate
with
state
and
local
health
14
agencies
and
other
public
and
private
organizations
to
develop
15
and
publish
or
approve
and
publish
informational
materials
to
16
educate
and
raise
awareness
of
lysosomal
storage
disorders
17
among
women
who
may
become
pregnant,
expectant
parents,
parents
18
of
newborns,
attending
health
care
providers,
and
others,
19
as
appropriate;
requires
an
attending
health
care
provider
20
to
provide
to
a
pregnant
woman
during
the
first
trimester
21
of
the
pregnancy,
the
informational
materials
published;
22
requires
the
center
for
congenital
and
inherited
disorders
23
to
make
the
informational
materials
available
to
attending
24
health
care
providers
upon
request;
and
requires
DPH
to
25
publish
the
informational
materials
on
its
internet
site.
The
26
requirement
for
screening
does
not
apply
if
a
parent
objects
27
to
the
screening.
If
a
parent
objects
to
the
screening
of
28
a
newborn,
the
attending
health
care
provider
shall
document
29
the
refusal
in
the
newborn’s
medical
record
and
shall
obtain
a
30
written
refusal
from
the
parent
and
report
the
refusal
to
the
31
department.
32
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LSB
2149XS
(3)
87
pf/nh
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