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B
B
Everybody
take
their
seats.
I
think
we
have
enough
for
a
quorum.
It
is
good
to
see
everybody
milling
around
and
enjoying
each
other's
company.
So
welcome
return
to
some
normalcy
here
for
our
legislative
meetings.
This
is
the
interim
joint
committee
on
health,
welfare
and
family
services
meeting
number
one.
The
date
is
wednesday
june,
the
16th
2021
madame
secretary.
Please
call
the
roll.
C
C
B
All
right
very
good:
we
have
a
quorum,
so
we're
established
to
do
business
here.
Hopefully
those
who
are
on
zoom.
If
you
can
you
hear
us,
okay,
can
I
see
a
nodding
of
heads?
I
can
see
some
thumbs
up
there.
Yes,
okay,
good!
You
want
to
make
sure
there's
any
issues
you
can
always
use
the
chat
function
to
let
us
know,
I
would
always
remind
anyone
who's
dialing
in
if
you
can
keep
your
mute
on
until
it's
time,
for
you
to
speak
for
those
who
are
presenters
as
well.
A
few.
B
Before
we
get
started,
I
know
there's
our
first
meeting.
Hopefully,
everybody's
enjoyed
their
break.
The
medicaid
oversight
advisory
committee
is
going
to
be
meeting
in
room
171
at
3
p.m.
Following
this
meeting
I
know
a
lot
of
us
are
on
that
in
that
committee
as
well,
and
also
just
to
let
people
know
ahead
of
time.
For
august,
the
interim
joint
committee
on
health,
welfare
and
family
services
has
been
approved
to
meet
at
the
kentucky
state
fair
on
august,
the
26th
at
8
30
in
the
morning.
B
B
If
you
want
to
make
sure
that
you
can,
if
you
can
mute
for
those
of
you
who
are
watching
on
zoom
all
right,
very
good
before
we
get
started,
we
do
have
a
special
introduction
from
chairwoman,
moser
she's
a
citation
to
read,
so
I'm
going
to
pass
it
over
to
her.
H
Thank
you,
mr
chair.
I
would
like
to
just
present
a
citation
from
the
house
of
representatives
to
mackenzie
longoria
who's
with
us
today
in
honor
and
recognition
of
world
elder
abuse
awareness
day,
which
is
june
15th,
so
that
was
yesterday.
H
We
joined
with
the
citizens
across
the
commonwealth.
In
observing
this
global
event,
it
was
launched
on
june
15,
2006
2006
by
the
international
network
for
the
prevention
of
elder
abuse
and
the
world
health
organization
at
the
united
nations.
This
important
event
was
established
to
provide
an
opportunity
for
communities
around
the
world
to
promote
a
better
understanding
of
abuse
and
neglect
of
older
persons
by
raising
awareness
of
cultural,
social,
economic
and
demographic
processes
affecting
elder
abuse
and
neglect.
H
B
Thank
you
for
that,
and
I
think
we
all
share
the
same
sentiments.
So
we
know
that
that'll
be
a
topic
of
discussion
for
us
a
little
bit
later
on
in
one
of
our
interim
meetings.
Kentucky
has
some
work
to
do
on
trying
to
improve
our
rankings
in
that
regard,
as
well,
as
you
can
all
see,
got
a
very
aggressive
agenda.
So
I
thought
we'd
address.
First
item
number:
nine:
on
the
agenda,
which
is
a
consideration
of
referred
administrative
regulations.
B
There
are
quite
a
few
regulations.
We've
had
a
chance
to
review.
All
of
these.
There
is
action
on
one
that
we'll
have
to
take.
First
of
all,
before
I
go
into
that
one,
there
is
a
letter
in
your
package
from
the
kentucky
medical
association.
They
asked
us
to
distribute
this
to
all
members
regarding
201
kar
2,
colon
380
has
to
do
with
board
authorized
protocols
from
the
board
of
pharmacy.
B
I
believe
that
this
is
a
letter
that
was
issued
in
february
as
these
this
reg
was
being
put
together,
and
I
think
some
changes
and
amendments
were
made
to
address
some
of
those
concerns.
But
again
it's
always
a
concern
from
the
kma
in
terms
of
just
scope
of
practice
with
issues
in
the
board
of
pharmacy.
However,
the
way
it's
drafted,
I
did
not
see
any
concerns
or
issues
with
that
regulation.
B
I
do
draw
your
attention
to
902
kar
045
190,
which
is
a
proposed
regulation
regarding
hemp
derived
cannabinoid
products,
packaging
and
labeling
requirements,
and
hopefully
there's
some
members
of
the
administration
who
are
on
the
call,
there's
a
request
for
again
an
amendment
to
this
regulation.
Are
you
available
you
on
the
zoom
call.
J
Yes,
sir,
this
is
julie,
brooks
I'm
the
regulations
coordinator
with
the
department
for
public
health.
Thank.
J
Certainly,
and
after
the
administrative
break
review
subcommittee
meeting,
the
department
was
contacted
by
a
couple
of
different
entities,
one
representing
the
hemp
industry
and
one
representing
the
retail
federation
about
some
concern,
some
language
in
the
regulations
that
wasn't
quite
earned
the
regulation
that
wasn't
quite
clear.
J
So
we
and
talking
with
staff
here
in
the
department
agreed
to
do
an
agency
amendment
to
make
it
clear
that
for
the
retail
federation,
their
concern
was
that
the
language
would
require
anyone
who
wanted
to
sell
cbd
products
or
products
that
contain
cannabinoids
would
have
to
register
with
the
department
and
that's
not
what
we
wanted.
It
was
more
those
that
would
be
manufacturing
it
in
a
finished
product
that
would
be
an
ingestible
finished
product.
J
So
we
agreed
to
make
that
change,
and
then
there
was
concern
raised
about
what
would
a
physician
say,
because
the
regulation
said
that
you
know
the
label
should
say
to
consult
your
physician
before
use.
So
there
was
concern
raised
about
what
would
a
physician
tell
someone.
So
after
talking
with
staff
here
in
the
office,
we
agreed
to
remove
that
from
the
regulation
as
well.
So
that's
what
this
agency
amendment.
B
Very
good,
thank
you.
So
the
proposal
for
those
of
you
who
might
be
looking
online
to
see
what
the
actual
here's,
the
actual
change
and
I'll
I'll
make
the
the
comments
of
what
they
want
to
see
change
and
the
regulation
is
under
section
two
sub
paragraph,
one
after
the
words
seeking
to
manufacture
to
delete
the
following:
is
a
comma
market,
comma
cell,
comma
or
distribute?
B
F
B
All
right,
this
will
require
a
roll
call
vote,
so
any
other
discussion
or
concerns.
Madam
secretary,
please
call
the
role.
G
G
K
D
B
B
Very
good
so
that
amendment
has
been
adopted
to
that
regulation,
any
other
discussions
on
any
of
the
regulations
that
are
before
us
there's
a
long
list
there,
if
not
allow
the
record
to
show
that
we
have
done
our
obligation
to
reviewing
all
of
these
regulations
before
the
committee
next
item
on
the
agenda
is
going
to
be
item
number
eight,
which
is
the
legislative
hearing
on
the
child
care
and
development
fund
block,
grant
preliminary
state
plan.
I
don't
know
if
director
vanover
and
director
day
are
on
the
call.
B
Very
good,
if
you
want
to
just
very
briefly
present
the
information
in
the
block
grant
preliminary
estate
plan,
we
would
appreciate
it.
J
Not
a
problem,
so
division
of
child
care
receives
annual
funds
from
the
child
care
and
development
block,
grant
that
are
specifically
designated
to
child
care
services
throughout
the
state.
Kentucky
receives
approximately
90
million
per
year,
and
then
we
must
contribute
a
state
match
to
those
funds.
The
funds
that
we
contribute
are
typically
about
10.6
million
in
the
chfs
general
funds
towards
the
subsidy
program,
as
well
as
10
million
in
tobacco
master
settlement
funds.
That
goes
towards
our
all-star
program
and
scholarship
programs
for
the
money
that
is
contributed
from
the
federal
government.
J
J
All
block
grant
funds
must
help
the
state
to
meet
the
guidelines
established
in
the
2016
federal
rule
for
the
child
care
and
development
block
grant.
There
are
required
percentages
that
we
must
use
to
distribute
these
funds.
At
least
70
percent
of
funds
issued
to
the
state
must
go
towards
direct
services,
and
that
is
typically
subsidy.
J
J
J
Our
contract
with
the
university
of
kentucky
for
coaching
and
training
our
contract
with
eku
for
our
professional
development,
statewide
registry
contract,
with
western
kentucky
university
for
the
family,
child
care
network
and
our
contract
with
dcbs
for
the
national
background
check
program,
the
subsidy
money
that
we
use
includes
not
only
payments
to
centers
for
low-income
families
foster
children,
parents
who
are
full-time
students
or
families
experiencing
homelessness,
but
it
also
includes
accountability.
Measures
to
prevent
fraud
and
reclaim
funds
from
fraudulent
payments.
J
Federal
accountability
is
also
attached.
With
these
funds,
we
have
monthly
meetings
with
our
federal
and
regional
partners,
six-month
audits
on
payment
and
claims
in
order
to
look
at
error
rates
and
six
six-month
reports
on
services
offered
that
are
issued
not
only
to
the
state
and
lrc,
but
also
to
our
federal
partners.
J
B
B
Seeing
none
very
good,
we
thank
you.
We
appreciate
the
information
and
again
the
records
show
that
we've
reviewed
the
block
grant
as
presented
before
us.
We
appreciate
it
very
much.
Thank
you
all
right,
you
can
all
see.
We've
got
several
presenters.
I
know
I've
gotten
several
requests
from
individuals
who
are
attending
remotely
and
so
trying
to
be
in
the
interest
of
time
to
help.
Some
of
those
folks
are
here
to
testify:
let's
go
ahead
and
jump
down
to
item
number
seven,
which
is
the
rare
disease
advisory
council
update.
B
Some
of
you
may
know.
We've
had
some
bills
filed
this
past
session
regarding
some
rare
diseases,
and
this
is
a
council
that
was
established
a
about.
I
think,
three
or
four
years
ago
now,
and
so
there's
been
some
change
in
leadership
there
we're
hoping
to
reactivate
this
council,
so
I
wasn't
sure
of
mr
klausing.
If
you're
on
the
call.
B
L
Thank
you
and
thanks
for
your
accommodation,
I've
got
a
deposition
at
1
30.
So
I'll
be
brief
to
everyone's
pleasure.
I
presume
so
yeah.
My
name
is
joe
clausing.
I
am
the
chair.
I
guess
recently
elected
chair
of
the
kentucky
rare
disease
advisory
committee.
I
was
appointed
by
governor
beshear
about
a
month
ago,
so
I'm
really
looking
forward
to
taking
this
committee
off
the
ground
and
taking
it
to
new
heights.
L
I've
been
on
the
committee
since
it
was
signed
into
law
in
2019,
but
we
for
whatever
reason
it
didn't
it
didn't
move
as
fastly,
as
some
of
us
would
like.
So
we're
looking
forward
to
to
moving
it
and
to
continue
to
keep
your
committee
updated
with
our
progress
and
being
a
good
resource
for
all
of
you
as
we
navigate
policy
decisions
that
will
impact
the
rare
disease
community,
we'll
have
16
members
on
our
committee,
it'll
be
a
diverse
group
representing
all
of
the
rare
disease,
caregivers
patients,
health
care
providers,
researchers.
L
It's
become
a
common
model
in
other
states,
including
illinois,
tennessee,
ohio,
virginia
and
west
virginia
we're.
Presently,
I'm
presently
contacting
other
previous
members
of
the
art
art
act
to
make
sure
they
still
want
to
be
on
board,
but
as
a
I'm,
also
the
executive
director
of
cursive,
so
as
a
father
of
a
14
year
old
with
cystic
fibrosis.
L
This
committee
is
near
and
dear
to
my
heart
and
I
thank
you
and
others
for
the
recent
passage
of
senate
bill,
44
and
45,
which
help
you
know
our
rare
disease
folks
we're
few
in
number,
but
we
have
severe
challenges
and
obstacles
to
overcome.
So
I'm
happy
to
answer
any
questions.
Anyone
from
the
committee
may
have.
B
Thank
you,
mr
closing.
Any
questions
we
have
for
mr
klausing.
I
just
want
to
thank
you
very
much
for
taking
I'm
looking
forward
to
your
leadership
on
this.
I
remember
your
testimony
during
this
past
session
on
again
senate
bill
44
and
45,
we
were
very
happy
to
get
that
through
our
committees
and
through
both
chambers
and
that's
become
law,
but
looking
forward
to
your
leadership
on
this
good
luck
on
that
deposition
here
in
a
few
minutes.
B
Well
with
that
in
mind,
let's
go
ahead
and
we're
gonna
again
we're
gonna
play
in
reverse
order
here,
but
we've
got
a
lot
of
folks
that
are
here
regarding
a
couple
of
disease
states
that
some
of
you
may
have
seen-
and
I
know
some
that
are
particularly
important.
B
Some
of
our
members
on
our
committee,
we've
got
some
other
individuals
who
are
again
out
of
state
and
zooming
in
so
we're
going
to
start
with
item
number
five,
which
is
a
pediatric
autoimmune,
neuropsychiatric
disorders
associated
with
streptococcal
infections
syndrome,
that's
known
as
pandas,
and
also
pediatric
acute
onset,
neuropsychiatric
syndrome
pans.
B
Representative
prunty
if
you'd
like
to
begin
and
introduce
your
guests
and
as
all
of
you
introduce
yourselves,
I
know
everybody
has
brief
testimonies.
Introduce
yourselves
for
the
record
and
the
floor
is
yours.
M
O
Yes,
my
name
is
tana
galil,
I'm
an
associate
professor
in
the
department
of
neurology
at
columbia,
university
in
the
city
of
new
york,.
M
We
weren't
sure
if
he
was
going
to
be
able
to
join
us,
but
I
really
appreciate
you
accommodating,
because
dr
gaiu,
I
hope
I
pronounced
that
correctly,
cannot
be
here
after
two
o'clock.
So
I
just
want
to
tell
you
as
a
former
physical
therapist
who
worked
with
children
of
varying
diagnoses.
M
What
first
got
my
attention
about
pandas
and
pans
was
an
article
in
the
november
december,
2019
ncsl
journal
entitled
little-known
panda
syndrome
getting
attention
at
that
time.
16
states
had
begun
looking
at
the
at
it,
and
issues
that
were
raised
were
lack
of
awareness,
lack
of
a
medical
diagnosis,
code
to
bill
for
services
and
lack
of
insurance
coverage.
Some
states
began
requiring
insurance
to
pay
to
pay
for
to
cover
pans
and
pandas.
M
Those
conversations
led
to
house
concurrent
resolution
78
of
the
2020
regular
session,
asking
that
a
task
force
be
established
to
study,
pans
and
pandas
here
in
kentucky.
What
is
the
incidence
where
the
children
and
the
families
affected
and
so
on,
and
then
subsequently
make
recommendations
we
were
able
to
present
to
the
house
and
family
services
committee
and
coveted
prevented
getting
from
the
senate
committee
covet
also
dominated
the
2020
interim
committee
as
well.
M
We
decided
to
take
a
different
approach
in
2021
and
house
bill
180
was
filed
to
establish
an
advisory
council
in
the
cabinet
rather
than
a
task
force,
but
was
it
never
heard?
However,
it
did
lead
to
conversations
with
both
chairs,
alvarado
and
moser,
along
with
the
cabinet
trying
to
figure
out
where
panties
and
pans
fit
in
order
to
obtain
the
desired
goals
and
meet
the
needs
that
were
identified.
M
The
children's
health,
technical
advisory
council
and
the
rare
disease
advisory
council
were
both
mentioned.
However,
it
didn't
fit
under
the
children's
health
tech
because
it
does
not
have
a
broad
enough
scope
of
disciplines
represented
at
least
initially,
to
dig
into
the
various
aspects
that
need
to
be
addressed,
and
the
rare
disease
advisory
council
had
not
been
functioning
for
quite
some
time.
M
M
O
Thank
you,
representative
chronicle,
for
implied
property
for
inviting
me
here.
So
I
am
associate
professor
at
columbia
university
and
I'm
also
a
research
scientist
is
who,
for
the
past
and
worst
10
years,
has
basically
worked
on
this
disease.
O
And
I
and
we
have
very
strong
evidence
of
the
involvement
of
the
immune
system
in
the
generation
of
both
neurological
and
psychiatric
infestations.
That
debilitate
children,
so
you
know
I
didn't
have
time
to
present
you
some
of
the
slides,
because
I
thought
that
this
would
be
a
broad
discussion.
But
I'm
happy
to
answer
any
additional
questions
that
you
may
have
regarding
this
disease.
G
Thank
you,
mr
chairman
doctor.
K
O
O
We
have
also
evidence
that,
indeed,
even
at
the
time
of
the
presentation,
they
may
not
have
infections
with
group
a
strap.
These
infections
are
very
common
in
children
and
so
any
child
at
any
time
point
you
know,
gets
an
infection
with
group
a
strap,
but
our
genetic
studies
do
show
that,
indeed,
that
these
children
that
have
this
disease
have
genetic
risk
factors
that
impair
the
immune
response
to
group
based
up.
D
Yes,
thank
you.
I
appreciate
that.
I
know
it
sounds
like
you've
been
in
this
research
for
many
many
years.
I
wanted
to
quickly
ask
the
rare
disease
component
of
this
is
just
I've
dealt
with
something
very
similar,
not
exactly
the
same,
but
do
you
have
any
diagnostic,
something
that
a
test
that
that
firmly
authenticates
the
presence
of
this
particular
disease
or
trying
to
diagnosis
is
that
is
that
seems
like
it's
a
big
issue
like
you
know
several
years,
sometimes
before
some
of
these
people
get
diagnosed.
O
So
that
is
still
an
outstanding
issue.
There
are,
you
know,
one
of
the
panels
that
was
developed
a
few
years
ago
by
dr
madeline
cunningham
at
the
university
of
oklahoma,
was
a
panel
to
identify
antibodies
that
recognize
surface
proteins
on
the
neurons
called
the
dopamine
receptors
d1
and
the
d2
receptors.
O
Now
this
test
has
put
into
question
by
some
studies.
So
currently
there
is
a
need
to
develop
better
your
markers.
We
actually
have
identified
10,
distinct,
inflammatory
molecules
in
the
blood
of
these
patients
that
were
aiming
to
publish
in
the
near
future
and
that
potentially
could
be
as
an
additional
marker.
But
currently
I
think
more
research
is
needed
to
firmly
stop
is
basically
tests.
That
can
be
ascertained
for
the
you
know,
for
the
diagnosis
of
the
disease
and
the
diagnosis
right
now
is
based
predominantly
based
on
the
neurological
and
psychiatric
evaluation.
O
I
O
So
it's
very
difficult
to
say:
you
know:
treatment
of
a
strap
strap.
So
first
there
are
a
lot
of
cases
in
children
where
you
can
have
a
strap
infection,
and
the
child
doesn't
know
that
it
has
a
strapping
action
and
so
basically,
because
I
like
the
most
common
form
of
disease,
which
is
the
sore
throat
which
all
of
us
have
manifested
at
some
point
in
the
childhood,
some
children
don't
really
have
a
big
sore
throat.
O
Yet
they
have
an
active
strapping
action,
and
so
a
child
may
even
go
to
a
clinic
and
just
become
you
know,
is
basically
his
his
throat
may
carry
group
a
strap,
and
you
know
he
may
not
even
be
aware
of
it.
However,
in
addition
to
that
group,
a
strap
has
the
ability
to
reside
also
inside
the
south,
in
addition
to
residing
outside
the
cell,
and
so
when
it
is
inside
the
cell.
O
Even
though
in
itself
this
bacteria
is
very
sensitive
to
penicillins,
when
it
is
inside
the
cell,
it
can
become
resistant
to
penicillins,
and
so
sometimes
the
treatment
can
be
very
difficult
because
it
can
reside
in
the
tonal
cells.
It
can
reside
in
the
anal
area,
and
so
treatment
can
be
quite
difficult
and
therefore,
for
example,
for
the
treatment
of
sediments
korea
or
rheumatic
fever,
which
are
also
the
sequela
of
group,
a
strap
infections.
B
Any
other
questions
members
of
the
committee,
dr
guy,
you
thank
you
so
much
for
your
presentation.
We
appreciate
that.
Thank
you
for
your
work.
I
know
this
is
upcoming.
I
know
we're
seeing
a
lot
of.
I
mean
things
like
lyme
disease,
which
is
a
lot
of
discussion
around.
You
know
long-term
antibody
and
autoimmune
response
to
infections
like
that
as
well.
I'm
sure
there's
a
lot
of
research
coming
in
the
future,
we'll
be
looking
back
at
these
days
and
thanking
you
for
your
work
on
this
topic,
so
I
know
you've
got
somewhere
to
go.
B
F
Yes,
thank
you
so
much
chair,
alvarado
and
thank
you,
chair
moser.
Thank
you
for
allowing
us
all
the
time
to
testify.
As
you
know,
my
name
is
michelle.
Libertory
and
my
family
has
resided
in
campbell
county
for
the
past
10
years
and
just
as
we
remember
the
circumstances
that
have
changed
our
world,
I
remember
the
very
moment
that
we
lost
our
then
seven-year-old
daughter,
kaelin.
That
date
was
march.
17Th
2019.
F
that
weekend
kaelin
was
ill
with
a
fever
and
was
generally
not
feeling
well,
but
on
monday
morning,
kaylynn
had
what
we
now
know
was
her
first
panic
attack.
She
was
overcome
with
debilitating
fears
and
the
sensation
that
her
throat
was
closing
and
that
she
would
die.
We
initially
thought
that
this
was
from
her
illness,
but
it
lasted
for
hours.
Caitlyn,
then
battled
back
to
back
panic,
attacks
and
developed
contamination,
fears
that
were
overwhelming
from
there.
She
added
to
her
mysterious
list
of
symptoms.
Kailyn
stopped
eating
most
of
her
foods.
F
F
She
was
exhausted
at
school.
We
were
exhausted
at
work
and
she
was
unable
to
focus.
She
would
not
let
me
out
of
her
sight
at
home,
she
experienced
debilitating
headaches
and
muscle
and
joint
pains
and
developed
motor
tape,
motor
ticks
and
began
losing
coordination
and
balance
to
the
point
of
falling
over,
and
we
needed
to
pull
her
from
her
dance
classes
because
she
could
not
maintain
her
balance.
F
She
also
had
aggression
episodes
and
we
had
never
seen
these
and
she
was
overcome
with
grief
after
these
episodes
had
subsided.
She
was
even
wetting
the
bed
at
night,
and
this
all
happened
within
a
week
or
two
of
this
illness
that
began
the
weekend
of
march
17th,
and
our
child
was
quickly
slipping
away.
The
child
we
once
knew
was
replaced
with
a
tormented
version
of
herself.
F
At
that
time
we
feared
that
maybe
a
brain
tumor
had
developed
or
that
she
had
experienced
some
sort
of
trauma
that
we
were
just
unaware
of.
So
I
called
to
make
an
appointment
with
the
pediatrician
on
my
own
and
I
begged
her
for
help,
as
I
knew
as
a
psychology
major
these
weren't
normal
mental
health
issues
that
came
up
and
she
was
also
experiencing
these
neurological
side
effects.
As
I
listed
these
symptoms
for
the
pediatrician,
all
she
could
say
was
this
is
so
weird,
and
I
said
I
know
it's
weird.
F
We
were
told
to
schedule
a
meeting
with
a
psychiatrist,
but
before
then
we
met
with
a
social
worker.
The
social
worker
evaluated
our
daughter
and
gave
her
a
diagnosis
of
panic
disorder
and
gave
her
a
list
of
101
coping
mechanisms
sent
us
on
our
way,
and
then
we
were
to
make
an
appointment
with
the
psychiatrist
later
on.
F
F
It
was
there
that
I
learned
about
pediatric,
autoimmune,
neuropsychiatric
disorder
associated
with
streptococcus
or
pandas,
and
that's
a
larger
subset
of
a
group
of
pants
or
pediatric
acute
neuropsychiatric
syndrome,
which
can
have
other
infectious
triggers
a
mother
shared
her
daughter's
story,
and
it
was
almost
the
exact
same
story
as
our
daughter
kalyn,
except
in
their
case.
Their
pediatrician
was
able
to
identify
it.
F
They
treated
the
child
with
antibiotics
and
anti-inflammatories
and
that
child
made
a
full
recovery
after
seven
weight
weeks
of
digging
and
still
no
help
from
school
personnel
or
doctors
that
we
had
reached
out
to.
I
found
a
panda
psychiatrist
in
northern
kentucky.
She
immediately
diagnosed
caitlyn
with
the
clinical
criteria
for
pandas.
F
Dr
daley
told
us
plainly
that
caitlyn's
immune
system
was
launching
an
autoimmune
attack
against
her
brain
from
a
strep
infection
and
she
needed
ivig
or
intravenous
immunoglobulin
treatment
immediately,
but
she
had
no
doctors
that
she
could
connect
with
in
kentucky.
Who
would
be
willing
to
treat
any
of
her
patients
who
she
has
seen
with
the
same
clinical
criteria?
F
So
our
next
best
bet
was
to
start
antibiotics
to
target
the
strep
and
to
calm
her
immune
response
within
just
five
days
of
being
on
the
antibiotics
and
the
medication
to
help
her
sleep,
kaylynn
stopped
experiencing
her
panic
attacks
fully
and
the
rest
of
her
symptoms
significantly
decreased.
Our
daughter
was
returning
to
us
just
as
we
know
that
strep
can
cause
an
autoimmune
immune
attack
on
the
kidneys
heart
and
skin,
as
in
scarlet
fever
and
rheumatic
fever.
F
My
daughter
needed
more
advanced
interventions,
but
there
had
been
no
one
in
the
state
of
kentucky
knowledgeable
or
really
willing
to
treat
tragically
many
medical
professionals
and
school
personnel
in
the
state
of
kentucky
have
no
knowledge
of
panzer
pandas
and
children
will
continue
to
have
a
downward
spiral
of
declining
health
and
cognitive
impairment.
If
we
don't
try
to
make
an
impact
now,
thankfully
we
will.
We
were
finally
able
to
receive
ivig
treatment
for
kalyn,
with
the
collaboration
of
a
doctor
from
cleveland
ohio,
dr
jan
krawinski,
and
a
neurologist
at
children's
hospital
in
cincinnati.
F
F
I
am
urging
you
to
please
consider
the
stories
that
you
hear
and
think
of
the
families
like
our
own,
whose
lives
have
been
turned
upside
down
and
please
be
sure,
to
look
at
the
clips
that
were
sent
to
you
by
representative
prenty,
and
you
will
see
other
stories
like
ours
and
the
testimony
of
dr
jan
kwinsky,
who
was
so
instrumental
in
our
help.
Thank
you.
So
much
for
listening.
N
Good
afternoon
my
name
is
kelly
joplin
and
I'm
a
pandas
parent,
I'm
also
a
professor
at
campbellsville
university,
I'm
a
representative
of
our
southeastern
pandas
and
pans
association,
and
my
son
battled
this
disease
for
over
10
years.
Here
in
kentucky
the
diagnosis
and
treatment
was
not
to
be
found.
N
We
know
that
if
we
can
restore
the
motor
health,
mental
health
and
cognitive
functioning
can
be
done
promptly
in
a
safe
cost,
effective
treatment
generally
the
longer
a
child
remains
undiagnosed
and
treated
the
greater
the
cost
to
treat
these
children,
including
the
ivig
that
michelle
mentioned
nationally.
33
percent
of
children
see
more
than
five
doctors.
N
Before
being
correctly
diagnosed,
our
family
sought
care
for
over
10
years
and
15
medical
professionals,
before
going
out
of
state
to
visit
a
national
expert
in
washington,
d.c
receiving
ivig
and
then
follow-up
care
at
the
university
of
arizona,
pandas
clinic
44
states
are
working
right
now
and
have
passed
legislation
related
to
this
disease.
Currently,
five
states
have
bills
mandating
insurance
coverage
for
severe
pandas
and
pandas.
N
In
addition,
10
have
developed
an
advisory
council
that
raises
awareness
and
can
make
recommendations
through
an
interdisciplinary
panel
to
work
with
doctors,
therapists
in
schools,
to
raise
awareness
and
to
promote
access
to
care
and
treatment.
Nationally
recognized
clinics
are
located
at
stanford,
university,
yale,
columbia,
university
of
arizona
and
now
the
university
of
arkansas.
N
P
Thank
you.
These
are.
These
are
tough.
Ladies
here
sorry,
thank
you
so
much
thank
you
for
having
us
today.
I
know
we
have.
Oh,
I
apologize
mark
kleiner
I
had
stepped
out
when
I
think
you
introduced
us
appreciate
you
having
us-
and
these
ladies,
are
very
tough.
I'm
also
a
guys
are
supposed
to
be
tough
right,
panda's
parent,
sorry,
it's
okay
need
my
wife
to
do
this,
but
I've
been
in
the
health
insurance
industry
for
30
years.
P
I
am
involved
in
the
health
insurance
advisory
council
on
the
corrections.
Commission,
a
variety
other
things
in
kentucky
to
help
improve
health,
and
I
just
really,
if
you
take
a
look
at
everything,
we've
done
today,
we
really
want
to
create
a
task
force.
That'll,
help
study
this
a
little
bit
more
and
education
is
the
key,
because
there's
one
thing
that
we
all
have
in
common
as
pandas
parents
is
that
these
symptoms.
P
The
symptoms
come
on
overnight
and
your
kid
changes-
and
you
know
this
is
this-
is
real.
This
is
real
and,
and
you
can
talk
to
each
person
and
it's
the
same
thing-
it's
the
paranoia.
It's
ocd,
my
son,
our
son
spent
two
and
a
half
weeks
in
the
psych
hospital
at
norton,
treating
trying
to
treat
the
symptoms
and
then
eventually
he
had
ivig
and
he
had
plasmapheresis
he's
doing
much
better,
but
he
still
has
issues.
You
know
he's
still
to
get
him
to
bathe.
He
thinks
the
water
is
dirty.
P
Food
sometimes
thinks
the
food
is
contaminated.
We
really
just
want
to
help
with
some
of
the
diagnosis
and
some
of
the
treatment
and
protocols,
and
so
that
physicians
can
understand
this
and
if
they
see
a
sudden
change
in
behavior
overnight,
with
all
these
symptoms
that
they
might
consider
the
low-cost
antibiotics
and
the
anti-inflammatories,
and
we
can
keep
the
kids
from
having
to
go
through
what
what
michelle's
son
went
through
for
10
years.
Fortunately,
we
had
a
neurologist
who
who
believes
in
it
and
and
treated
our
son
earlier
and
he's
doing
a
lot
better.
P
B
Thank
you
very
much
representative
martian.
C
N
My
son
had
the
he
had
won
a
high
dose
round
of
ivig
and
it
took
about
three
to
six
months
when
we
saw
a
change
and
he
start
to
feel
better.
Some
is
just
one
and
some
have
to
have
it
more
often
depending
on
what
their
needs
are,
and
I
guess
the
severity
and
it's
not.
Of
course
it's
not
every
child
who
has
pandas
or
pans.
It
is
there's.
N
There
are
mild
versions,
there
are
moderate
versions
and
then
there's
severe
versions
and
those
dr
aguilera
talked
a
little
bit
about
that
genetic
disposition
and
so
we're
finding
that
we
are
the.
We
are
the
blessed
ones
right.
O
So
so,
if
I
can
intersect
for
a
second
there
to
answer
this
is
it
so?
I
think
there
are
some
part
of
the
nimh
bands
consortium
who
developed
the
guidelines
for
the
treatment
of
the
disease
and
those
guidelines
state
that
indeed
part
of
the
treatment
is
the
antibiotic
treatment
with
anti-inflammatory.
But
when
these
don't
work,
then
you
really
need
to
get
rid
of
the
bad
antibodies
that
are
circulating
in
the
bloodstream.
O
P
For
that,
so
basically
we're
just
trying
to
catch
it
early
help
the
kids
so
that
they
don't
have
to
suffer
and
also
with
the
low-cost
treatment.
The
psychiat
the
two
weeks
in
the
hospital
for
the
psychiatric
stay,
the
ivig
and
the
plasma
freezes
cost
our
insurance
company.
P
So
we
just
want
to
raise
awareness,
so
that's
that's
the
key
and
from
an
insurance
perspective
you
know,
prevention
has
been
proven
that
that
helps
prevent
disease.
You
know
it's
costly
on
the
front
end,
but
then
you
save
money
in
the
long
run.
So
again,
thank
you
for
having
us.
H
Yes,
thank
you,
mr
chair,
and
thank
you
so
much
for
your
your
testimony.
All
of
you,
it's
it's
nice
to
see
you
michelle,
and
I
really
appreciate
your
coming
and
reintroducing
this.
I
mean
we've
heard
this
before
and
it's
you
know
the
more
we
talk
about
it,
the
more
organized
everything
is
starting
to
feel.
I
appreciate
that
that
the
advisory
council
is
kind
of
up
and
running
again,
and
I'm
wondering
if
I
I
I
mean
I
have
a
lot
of
questions,
but
I
I
would
I
wonder
about
prompt
diagnosis.
H
How
readily
available
is
it
I
mean?
Is
it
really
a
lack
of
education
and
awareness
about
this?
That
pediatricians
don't
necessarily
test
for
this
right
away,
or
is
it
just?
The
lack
of
you
know
are:
is
the
testing
just
not
available.
N
I
think
it
from
my
perspective
as
a
parent,
our
experience
was
pediatricians
are
very
compassionate
and
listen,
but
also
they
feel
like
because
it
presents
psychiatrically
that
they
want
to
pass
it
off
to
mental
health,
and
I
think,
because
it
is
a
sort
of,
I
think
the
term
is
cross-disciplinary
approach
in
terms
of
neurological
and
psychiatrically,
and
sometimes
it
presents
you
know
in
different
orthopedic
issues,
because
it
is
so
complex
that
it
does
take
all
sorts
of
different
professionals
to
weigh
in
and
in
terms
of
a
clinical
history
having.
N
H
Okay,
if
I
may
one
one
more
quickly,
do
you
see
an
opportunity
in
the
rare
disease
advisory
council
to
to
work
to
have
a
subset
or
a
work
group
on
pans
or
pandas,
specifically,
rather
than
creating
a
separate
task
force?
I
think
the
advisory
council
would
be
more
long-term
task.
Forces
are
are
typically
really
time
limited.
M
H
H
We
could
move
on
it
right.
I
I
mean.
I
just
think
that
we
we
have
the
infrastructure
in
place
and
we
obviously
have
the
the
knowledgeable.
You
know
advocacy
group,
and
I
just
think
that
you
know
it's
it's
kind
of
a
group
that's
already
set
in
place
for
a
work
group,
so
you
know
I.
I
look
forward
to
hearing
any
recommendations
that
that
come
from
this
group,
so
thank
you.
D
Yes
quickly,
I
want
to
thank
you
so
much
for
just
being
here
and
sharing.
I
heard
the
words
come
out
of
your
mouth
several
times,
and
it
just
rings
so
much
to
my
heart
and
I
know
what
you
must
be
going
through,
but
this
is
real.
I
kept
hearing
that
what
that
tells
me
is
that
western
medicine
probably
hasn't
accepted
this.
D
G
D
Unfortunately,
there
is
a
tendency,
certainly
in
in
western
medicine,
to
to
to
be
too
quick
to
pass
it
off,
and
I
want
you
to
know
that
I
feel
every
piece
of
the
frustration
that
you're
feeling
and
your
health
insurance.
D
You
talked
about
that
and
that'd
be
my
last
question,
but
because
it's
probably
not
recognized
as
a
quote-unquote
real
disease
by
some
do
you
are
you
having
trouble
or
do
people
typically
are
having
trouble
getting
the
insurance
paid
for
correct.
P
And
a
lot
of
times-
and
I
talked
to
immunologists
and
neurologists
just
a
couple
days
ago-
and
I
just
leveled
with
them-
and
they
weren't
going
to
tell
me
this,
but
I
I'm
smart
enough
to
know.
I
said:
basically,
you
know
they're,
it's
a
rare
condition.
P
Right
and,
and
doctors
are
scientists,
so
they
have
to
see
the
studies
and
the
you
know
more
and
more
studies
are
being
done.
So
it's
been
published
now
in
the
new
england
journal
of
medicine
and
you've
got
columbia,
doctors
that
are
working
on
this,
so
it's
becoming
more
and
more
common,
but
to
go
and
diagnose
this
condition
and
try
to
get
the
insurance
company
to
pay
for
it.
They're
gonna
they're,
not
gonna,
do
it.
There
is
a
code
for
it,
but
they're
not
paying
for
it.
P
So
what
they
do-
and
I
know
what
they
do-
is
they
treat
for
a
different
condition
so
that
we
can
get
it
paid
for
because
because
our
doctor
said
we're
going
to
get
your
son
better
and
he
did
what
he
needed
to
do
to
get
it
taken
care
of.
So
we
just
need
more
studies.
We
just
need
to
let
people
know
about
what
the
signs
and
symptoms
are,
so
that
they
don't
just
try
to
treat
it
with
the
medications
and
as
a
psychiatric
problem.
P
That's
really
the
big
thing
and
that
that
doesn't
cost
a
lot
of
money
to
educate
people
on
it
to
let
them
know
about
it,
because
we
found
out
because
a
friend
watched
2020,
that's
how
we
found
out.
Somebody
said
hey,
I
think
that's
what
your
son
has
and
my
wife
watched
watched
the
episode,
and
it
was
exactly
what
our
son
has
so
you're.
You
have
several
doctors
here.
How
often
do
you
have
a
con,
a
child,
that's
normal
and
all
of
a
sudden
has
eight
different
symptoms.
Exactly
the
same.
D
Thank
you
very
much.
I
had
a
hunch
of
that
and
I
I
I
just
want
you
to
know
that
our
prayers
are
with
you
and
we'll
do
whatever
we
can
to
to
to
make
this.
You
know
to
get
the
education
out
there
and
get
people
more
aware
of
this.
So
thank
you
very
much.
Thank
you.
B
G
Thank
you
very
much,
I'm
I'm
so
impressed
with
the
people
testifying
today.
I
worked
for
several
years
with
dr
chart
mabry
to
expand
our
newborn
testing
and
there
were
so
many
different
diseases
that
were
not
included
and
every
time
we
included
one.
The
insurance
companies
went
nuts
and
we
had
to
battle
them
for
several
years.
G
That's
very
reliable
with
symptoms
and
and
this
diagnosis
we
could
put
it
on
our
twitter
or
our
facebook.
At
least
people
will
be
able
to
read
something
and
see
that
there's
something
new
if
they
and
if
they
have
concerns
about
a
grandchild
or
a
child,
it
might
put
them
in
a
direction
where
they
can
get
some
therapeutic
help.
I
really
appreciate
you,
thank
you
so
very
much
we'll.
B
D
Very
briefly,
just
to
comment.
Thank
you
all
so
much
for
the
very
powerful
testimony
I'm
hiding
back
here
behind
the
column
kelly.
I
think.
Every
year
I've
been
up
here.
You've
brought
students
from
campus
university
in
my
district
here,
your
social
work
students,
we've
had
great
discussions.
You
probably
never
thought
you'd
be
testifying
today.
I
also
did
not
know
your
story,
and
I
just
want
to
thank
you
for
being
here
and
for
sharing
that
and
each
one
of
you
all,
very,
very
powerful.
D
B
Thank
you
senator
all
right,
so
I
want
to
thank
you
all
very
much
for
coming
here
today
for
presenting
this
is
an
awareness
campaign
really
for
a
lot
of
you
for
this
disorder.
I
remind
people,
people
go
see,
doctors
we're
trained
when
we
hear
hoof
beats
to
look
for
horses,
and
so
you
run
the
basic
tests.
You
try
to
find
things
when
you
come
back
and
say
everything's
normal
people
say
well.
B
I
guess
it's
all
in
my
head
doctor
and
they
think
that
they're
going
to
say-
and
I
go
no,
I
just
don't
know
what
you
have
and
that's
really
a
conversation
that's
had
more
and
more
is
that
we
don't
know
everything
in
medicine.
We
think
we're
very
fancy
and
they
thought
we
were
very
fancy.
B
100
years
ago
we
thought
we
were
very
fancy
200
years
ago,
we've
come
a
long
way,
there's
a
lot
more
that
we're
discovering
a
lot
more
in
the
immune
system
that
we
realize
it's
affecting
disease
states
affecting
cancers
affecting
a
lot
of
stuff
out
there,
and
so
the
more
we
get
exposed
to
this
more
doctors
hear
about
this.
It
becomes
front
of
mind
so
when
they
see
somebody
they
go,
I
don't
know
what
this
is,
but
it's
weird
and
I've
heard
about
this.
It
triggers
that
memory
for
a
lot
of
physicians.
B
B
Thank
you
for
being
here
all
right.
We've
got
several
other
physicians,
as
you
can
see
on
the
agenda.
So
next
time
we're
going
to
cover
is
going
to
be
items
number
two
three
and
four
we'll
try
to
combine
all
that
information
into
one.
We
have
dr
john
weeks
with
norton
healthcare,
dr
jeffrey
goldberg,
with
the
american
college
of
obstetrics
and
gynecology
dr
connie
white
who's
deputy
commissioner
for
the
department
for
public
health
for
the
cabinet.
B
B
We
have
the
kentucky
perinatal
quality
collaborative,
which
also
does
a
lot
of
work
on
trying
to
analyze
data
and
provide
us
some
recommendations.
We
know
that
we're
trying
to
improve
our
numbers
here
in
the
state
of
kentucky.
So
if
you
would
like
to
introduce
yourselves
to
the
record
and
begin
your
testimony,
we
would
appreciate
it.
Q
K
Yes,
my
name
is
dr
jonathan
weeks,
I'm
a
maternal
fetal,
medicine
physician
with
norton
healthcare,
and
I
will
try
to
keep
my
comments
as
brief
as
possible
and
respect
for
your
time.
Q
Dr
weeks,
I
think
if,
if
you
wanted
me
to
start
with
mine
and
then
we
could
lead
into
yours,
that's
okay,
we're
switching
the
order
a
little
bit
and
dr
white.
E
Hi
dr
connie
white,
the
deputy
commissioner
of
clinical
affairs,
the
kentucky
department
for
public
health
with
20
years
of
experiences
in
ob
gyn
here
in
frankfurt,
kentucky.
Q
So
I
want
to
thank
chairwoman,
moser
and
and
chairman
alvarado,
for
having
us
back
today.
This
is
actually
a
rediscussion
of
a
topic
that
was
covered
about
three
years
ago
and
I
realized
not
all
of
you
were
on
the
committee
then.
So
this
is
somewhat
of
an
update
and
we,
we
think
a
good
update
and
really
a
thank
you
for
the
work
that
the
legislature
has
done
if
becky
lancaster
is
on.
Q
Q
So
I
want
to
start
off
today,
just
with
a
brief
introduction
to
the
whole
concept
of
maternal
mortality,
not
exactly
you
know,
a
light
topic
of
conversation,
but
one
that's
very
important
that
that
we
okay,
thank
you
that
we
have
an
understanding
of.
You
know
why
this
is
so
important.
So
the
the
truth
is
that,
while
a
lot
of
people
think
the
job
of
an
obstetrician
is
to
deliver
babies,
that's
really
not
what
modern
obstetrics
is
about
delivering.
Q
If
you
look
at
the
the
reasons
for
infant
mortality,
most
infant
mortality
is
actually
what
we
call
neonatal
mortality,
meaning
it's
it's
mortality
that
occurs
within
the
first
month
or
so
of
life
and
outside
of
congenital
malformations.
What
colloquially
we
people
know
as
birth
defects
outside
of
that
leading
cause.
Q
Most
of
the
reasons
for
neonatal
mortality
are
actually
obstetrically
related
by
by
far
the
most
common
is
low
birth
weight
from
prematurity,
usually
due
to
premature
labor,
you
have
illnesses
in
the
mother.
You
have
problems
with
the
placenta
or
the
umbilical
cord.
You
have
problems
with
infection
which
is
usually
related
to
delivery
itself.
Q
Q
Everybody
knew
somebody
who
died
in
labor
or
knew
somebody
who
didn't
have
a
mother,
because
their
mother
died
in
labor
and
other
than
my
medical
colleagues.
Here,
I
think
that's
a
statement
that
hopefully
a
few
of
you
could
make
today
so
we've
seen
a
dramatic
fall
in
maternal
mortality
and
corresponding
with
that
we've
seen
a
dramatic
fall
in
infant
mortality
over
the
last
century.
Q
Back
in
my
grandmother's
error,
the
the
the
rate
of
maternal
mortality
was
measured
in
many
hundreds
and,
as
you
can
see
by
the
time
I
was
in
medical
school
in
the
1980s
we'd
gotten
it
down
to
the
single
digits.
Q
We
know
that
for
every
case
of
a
woman
who
has
died
from
infection
or
bleeding
or
another
cause,
that's
an
indicator
for
many
many
other
patients
who've
had
the
same
problem,
but
because
of
modern
medical
capabilities,
we've
been
getting,
we've
been
able
to
go
in
and
salvage
the
situation.
Nonetheless,
that's
a
lot
of
morbidity.
Q
Q
Why
is
it
important
to
conduct
a
formal
review
of
every
case
of
maternal
mortality
in
the
state?
It
goes
back
to
that
old
adage
in
the
business
world.
You
can't
manage
what
you
don't
measure
if
we
were
simply
going
by
anecdotal
data
on
why
maternal
mortality
occurred.
We
would
never
really
get
a
true
understanding
of
what
the
problems
were
and
how
to
address
it.
And
the
important
thing
for
the
legislature
to
understand
is
that,
by
studying
this,
that
that
negative
trend,
I
showed
you
is
actually
reversible.
Q
Q
They
instituted
a
maternal
mortality
review
committee
where
they
reviewed
every
maternal
death.
They
realized
what
the
major
problems
were.
It
turned
out
in
california.
It
was
related
to
obstetrical
hemorrhage.
It
was
patients
who
were
bleeding
to
death,
in
spite
of
all
of
our
technology,
to
stop
that
from
happening.
Q
Q
Q
Q
Most
of
the
things
that
we
come
up
with
can
be
implemented
by
non-governmental
stakeholders,
whether
it's
the
kentucky
medical
association
or
the
kentucky
nurses,
association
or
the
kentucky
hospital
association
or
even
grassroots
education.
Most
of
it
does
not
necessarily
require
government
intervention,
but
some
of
it
does,
for
example,
having
a
maternal
mortality.
Review
committee
would
not
have
been
possible
without
the
actions
of
the
legislature
and
we'll
be
coming
to
you
in
the
future,
with
additional
solutions
that
are
also
going
to
require
some
government
action.
K
K
I've
seen
many
many
patients
with
complex
medical
problems,
many
of
them
with
serious
and
challenging
maternal
or
fetal
conditions,
but
by
the
turn
of
the
millennium
we
saw
the
emergence
of
the
opiate
addiction
epidemic.
It's
been
unremitting,
it's
claimed
many
of
the
lies
of
our
young
women
and
devastated
their
families
and
children.
K
We've
done
much
to
address
this
issue
over
the
last
decade
or
so,
and-
and
there
are
some
good
stories
to
be
told,
but
unfortunately,
we've
seen
a
continued
transition
from
the
use
of
prescription
pain,
pills
to
injectable
opiates,
in
particular
methamphetamine,
and
so
we're
seeing
a
continuing
rise
in
death
rates
in
the
state
and
in
the
country.
K
It
turns
out
that
in
2010
at
that
point
in
my
career,
I
was
in
academic
medicine
and
charged
with
training
and
influencing
being
a
good
mentor
for
residents
and,
as
we
saw
more
of
these
patients
coming
in,
we
weren't
comfortable
with
their
care
and
we
felt
ill
prepared,
and
that
was
my
call
to
educate
myself
and
to
be
as
as
a
good,
a
mentor
as
possible,
and
we
now
know
that
this
condition
is
one
of
a
brain
disorder.
People
lose
control
of
their
decision,
making
and
behavior.
K
They
don't
intend
to
hurt
their
children
and
devastate
their
families,
but
that's
where
we
end
up
I'll
get
quickly
to
how
all
this
is
influencing
maternal
mortality.
K
So
it
continues
to
be
an
extremely
challenging
problem.
I
will
say
that
most
of
those
women
who
died
of
drug
overdoses
did
have
long-term
serious
substance.
Use
disorders
with
multiple
relapses
most
were
offered
care
and
many
initially
engaged
most
had
psychiatric
comorbidity,
that
that
was
important,
anxiety,
depression,
other
more
serious
conditions.
Ptsd.
K
K
You'll
hear
from
dr
white
that
the
kentucky
perinatal
quality
collaborative
would
like
the
commonwealth
to
be
a
great
place
for
every
woman
to
deliver
a
baby
and
a
great
place
for
every
baby
to
be
born,
and
I
would
say,
our
challenge
going
forward-
is
to
go
beyond
the
perinatal
period
and
make
the
commonwealth
a
great
place
for
every
child
to
live,
grow
and
develop.
E
B
Bit
more
in
detail
just
to
make
the
members
aware.
I
know
several
members
are
here
from
last
night
and
we
have
a
severe
mental
illness
task
force.
That's
meeting
now
and
we
had
our
first
meeting,
I
think.
Last
evening
this
topic
was
discussed
about
our
shortage
of
psychiatric
providers
really
in
the
state
I'll
throw
the
statistic
out
there:
350
psychiatrists
for
the
entire
state
of
kentucky
about
a
little
bit
under
60
child
psychiatrists
for
the
state
of
kentucky.
B
We're
woefully
deficient
in
that
in
that
regard,
we've
got
to
do
a
better
job
of
trying
to
get
people
to
get
into
the
field
and
stay
in
our
state
to
provide
that
care.
It's
really
it's
becoming
a
crisis
situation
in
that
regard.
So
we
appreciate
that-
and
it's
just
very
timely
a
lot
of
this.
It's
amazing
how
much
the
topics
we
discuss
blend
together
when
it
comes
to
mental
illness
when
it
comes
to
perinatal
mortality,
again,
maternal
mortality,
all
those
kinds
of
things,
so
dr
weeks
is
very
poignant
in
apropos
dr
white.
Please.
E
E
So
I
I
wanted
to
just
give
you
a
as
quick
a
snapshot
as
I
can
of
what's
happening
in
kentucky
right
now.
Are
we
we
want
to
be
no,
but
are
we
getting
there?
We
are
working
on
the
infrastructure,
the
support
systems
that
are
going
to
help
us
as,
as
dr
week
said,
make
kentucky
a
great
place
for
a
woman
to
have
a
baby
and
a
great
place
for
a
baby
to
be
born.
E
I
will
show
you
information
and-
and
you
do
receive
the
legislature
gets
a
mature
maternal
mortality
report
every
year
from
our
maternal
child
health
division
here
in
the
department
for
public
health.
This
data
here
just
shows
when
we
first
started
looking
at
the
deaths
we
started,
the
mortality
review
committee
was
in.
E
We
had
our
first
organizational
meeting
in
17
and
started
in
18
looking
at
these
deaths,
and
when
you
first
look
at
this,
you
would
say:
well,
31
percent
of
the
deaths
came
from
from
overdose
deaths,
but
actually
it
was
more
than
that.
When
you
looked
at
those
deaths,
we
found
that
some
of
the
motor
vehicle
accidents
had
a
substance
use
disorder
factor.
E
Some
of
the
cardiac
events
were
valvular
disorders
because
of
the
cardiac
factor
and
when
we
actually
added
it
all
together,
we
had
a
little
bit
over.
50
percent
of
our
deaths
were
because
of
some
type
of
a
substance,
use
disorder
factor
and
when
we
looked
at
our
2018
deaths,
48
of
those
were
substance
use
disorder.
5
were
probably
so
again
we're
over
50
of
our
deaths
in
kentucky
for
a
woman
either
while
she
was
pregnant
or
within
one
year
after
delivery
were
related
to
a
substance
use
disorder.
This
doesn't
necessarily
mean
an
overdose.
E
As
I
said
it
could
be
motor
vehicle,
it
could
be
cardiac,
it
could
be
hypertensive
or
it
could
be,
and
and
as
far
as
suicide
goes,
the
coroner
is
sorry
the
state
medical
examiner
does
they
do
not
re
call
something
a
suicide.
Unless
there's
a
note,
so
some
of
these
overdose
deaths
we
don't
know
if
this
was
an
accidental
overdose
or
intentional.
I
also
wanted
to
point
out-
and
I'm
sure,
you've
seen
this
map
before.
E
Thank
you
for
your
legislation
of
several
years
ago,
when
you
made
neonatal
absence,
syndome
a
reportable
illness
in
kentucky,
and
we
are
continuing
to
try
to
refine
and
improve
the
reporting
from
hospitals
on
our
babies
with
neonatal
abstinence
syndrome
and
that
that's
a
whole
presentation
in
itself.
But
I
did
want
to
bring
bring
this
in.
These
are
the
three
cogs
of
the
wheel
and
I
wanted
to
show
you
how
kentucky
has
fared
on
this.
We
developed
the
maternal
mortality
review
committee.
E
We've
had
a
committee
for
40
years,
but
that
committee
did
not
have
the
power
that
you
gave
this
committee
to
be
able
to
look
at
this
in
a
very
detailed,
an
intricate
way
in
2019
our
kentucky
perinatal
quality
collaborative
started
and
we'll
talk
about
what
that
is,
but
it's
a
common
table
where
the
providers,
the
insurers
and
the
delivery
hospitals
get
together
and
say:
okay,
let's
look
at
our
data.
What
are
our
problems
and
are
there
evidence-based
interventions
that
we
can
do
used
to
help
all
of
our
providers
in
delivery
hospital?
E
And
I'm
very
excited
to
tell
you
that
march,
the
1st
of
2021
kentucky
became
an
aim
state.
That's
the
alliance
for
innovation,
for
maternal,
on
maternal
health.
That's
an
organization
that
hersa
and
acog
our
professional
organization,
american
college
of
obstetricians
and
gynecologists
has
put
together
where
they
pulled
into
bundles
the
evidence-based
information
that
would
be
needed
if
someone
wants
to
take
a
specific
problem
from
maternal
health
and
improve
and
approve
that
these
are
the
members
of
the
mmrc,
the
maternal
mortality
review
committee,
I
apologize.
E
There
are
lots
of
abbreviations,
but
I
thought
that
was
better
than
spelling
out
every
single
word
on
here.
It
would
make
the
slide
even
busier.
I
just
wanted
you
to
see
that
we
do
have
dph
staff
that
are
assigned
to
this
group,
but
none
of
us
are
voting
members.
Everyone,
that's
a
voting.
Member
on
this
group
is
an
active
practicing
clinician,
so
we
have
ob
gyns
and
maternal
fetal
medicine,
specialist
neonatologist.
E
E
I
think
y'all
are
familiar
with
that
group
of
of
all
the
commissioners
of
public
health
across
the
state
chose
11
states
to
come
to
washington,
bring
the
representatives
you
see
here,
those
five
representatives
we
met
in
a
room
and
said
what
is
the
one
thing
that
we
can
do
in
kentucky
to
make
it
healthier
for
women
and
babies,
and
it
was
by
far
we
agreed.
We
needed
a
perinatal
quality
collaborative
the
next
year
when
we
went
back
for
our
next
meeting.
E
They
added
the
conte,
they
added
the
peri,
the
primary
care
association
of
each
state
to
come.
So
we
now
have.
The
kpca
is
a
part,
a
member
of
our
omni
group
that
stands
for
I'm
sorry,
opioid,
use,
maternal
outcomes
and
neonatal
abstinence
syndrome
initiative
and
even
though
they
didn't
add
it,
we
have
added
to
our
kentucky
team,
the
department
for
a
community-based
services.
E
We
don't
see
how
we
can
even
begin
to
attempt
to
attack
these
issues
and
make
our
moms
and
our
babies
and
our
families
healthier
unless
we
have
dcbs
working
alongside
of
us.
So,
as
I
said,
a
quality
collaborative
is
a
statewide
effort.
You
are
looking
at
pregnancy,
delivery
and
that
first
year
of
life,
it
lives
in
the
department
for
public
health
because
we
felt
like
that
was
the
best
place
for
it
to
be,
and
I
like
to
call
it
switzerland,
it's
not
uk,
it's
not.
E
U
of
l,
it's
not
a
catholic
system,
it's
not
a
baptist
system,
it
is
switzerland
and
we
are
overseeing
these
things
throughout
the
state
so
that
we
can
be
the
neutral
party.
That's
looking
at
the
best
outcomes
for
everyone,
and
that
goal
is
to
reduce
the
rates
of
maternal
mortality,
needle
natal
abstinence
syndrome
and
improve
the
health
outcomes.
As
we've
been
talking
about
just
to
show
you,
these
are
the
partners
that
started
with
us.
I
wanted
you
to
see
that
this
is
not
just
the
cabinet's
work.
E
This
is
a
group
of
dedicated
people
in
the
cabinet
that
have
reached
out
all
across
our
state
and
we
continue
to
get
more
and
more
partners
on
board.
As
I
said,
we
are
now
in
aim
state,
which
is
a
big,
exciting
big
deal
for
us.
This
is
a
group,
as
I
said
that
can
assist
us
with
tools
and
technical
assistance.
They
can
help
us
with
training.
They
have
visual
aids
that
can
help
us.
E
They
can
know
how
other
states
have
done
these
initiatives
in
their
states
and
can
give
us
some
pointers
and
tips
and
the
how
to
help
us
to
get
people
to
buy
in
how?
How
do
we
sell
this
to
the
to
the
hospital
staff,
because
we
know
that
it's
not
just
dr
me
talking
to
another
doctor,
dr
goldberg
or
dr
weeks.
This
is
a
culture
change
if
we
can
go
into
a
labor
and
delivery
unit
give
them.
E
E
Kentucky
has
chosen
the
bundle
that
we
want
to
use
at
the
beginning,
as
our
first
initiative
with
aim
is
going
to
be
obstetrical
care,
I'm
sorry,
maternal
care
for
substance
use
disorder,
so
there
is
a
whole
bundle
that
we
can
tap
into
to
help
us
understand
how
we
can
do
this
efficiently,
how
we
can
do
this
in
evidence-based
manner
and
how
we
can
get
outcomes
for
our
women
working
together
to
make
kentucky
a
great
place
for
everyone,
but
to
have
a
baby
and
a
great
place
for
every
baby
to
be
born,
and
I
certainly
agree
with
dr
weeks
a
great
place
for
every
baby
to
live.
E
The
last
thing
that
I
wanted
to
talk
about-
and
I
think
my
I'm
doing-
okay
on
time
is
house
bill
212
that
bill
was
passed
and
it
is
instructing
the
department
for
public
health
in
their
maternal
mortality
report
to
give
you
information
by
race,
by
income
and
by
geography.
E
So
I'll
start
with
the
geography
we
have
if
you've
seen
in
that
neonatal
abstinence
syndrome,
chart
that
I
showed
or
map
that
I
showed
the
numbers
are
very
small
in
a
lot
of
these
reports
and
to
put
a
point
on
a
map
in
a
county
really
does
take
away
that
patient's
anonymity.
E
So
we
we
can
report
that
by
ad
district
and
when
we
do
our
report
this
november,
we
will
be
able
to
do
that
reporting
so
that
you
can
get
an
idea
of
where
these
women
are,
where
their
residence
of
it
is,
and
that
is
on
their
death
certificate.
E
In
the
beginning,
when
we
were
doing
maternal
mortality
review,
we
were
only
looking
at
death
certificates
and
adding
those
numbers
up
what
we
found
when
we
actually
started
looking
at
those
is,
some
of
them
had
been
checked
off
as
pregnant,
but
these
women
weren't
pregnant.
We
actually
had
one
that
was
a
man
that
had
been
checked
off
as
pregnant,
so
we're
doing
very.
Our
numbers
now
are
much
more
solid
than
numbers
that
we
had
in
the
past
when
we
just
looked
at
death
certificate
numbers,
the
second
issue
about
income.
E
We
won't
be
able
to
provide
that
information
because
we
use
patients
medical
records.
So
if
connie
white
dies
and
you
pull
my
medical
record,
there
would
be
no
way
for
anyone
to
know
what
my
income
was.
So
we
really
don't
have
access
to
that.
We
could
look
at
people
that
have
medicaid
versus
private
insurance
versus
self-pay,
but
that's
the
closest
thing
to
any
kind
of
financial
information
we
would
have
on
these
women
and
as
far
as
looking
at
race,
we
did
include
that
in
the
last
report
that
was
that
was
recently
released.
E
I
do
want
to
point
out
that
if
you
go
to
that
chart,
it
says
on
there
that
if
you
look
at
rate
the
rate
of
death
in
kentucky
over
the
last,
I
believe
is
the
last
two
years
says
that
there
is
a
42.1
rate
of
death
for
black
women
and
a
17.2
rate
for
white
women.
E
E
In
2018
we
had
58
deaths.
Eight
of
those
women
were
african-american.
Four
of
them
were
a
substance
use
disorder,
death.
Two
of
them
were
a
death
related
to
leukemia
and
lymphoma,
and
two
of
the
deaths
were
a
severe
hypertension
related
to
pre-eclampsia
and
sorry,
that's
my
timer
telling
me
my
time
is
up
two
of
them.
One
of
them
was
a
hypertension
related
to
pre-eclampsia
and
the
other
was
a
placental
abruption.
E
So,
as
you
look
at
the
rate
and
see
those
high
levels
of
those
eight
african-american
deaths,
there
were
two
that
were
medically
related
and
the
others.
As
we
said,
half
of
them
were
related
to
some
type
of
substance
use
disorder
factor.
So
these
are.
This
is
the
information
I
wanted
to
share
with
you,
and
I
am
excited
to
be
here
and
answer
any
questions
that
you
might
have.
B
Thank
you,
dr
white,
and
thank
you,
dr
weeks,
dr
goldberg,
for
your
presentation
really
such
an
important
topic.
We
know
that
we
need
to
do
better
as
a
state,
and
I
think
we
know
that
we
have
high
c-section
rates
and
I've
spoken.
Somebody
mentioned
arkansas
a
bit
earlier
in
another
presentation.
B
They
used
to
have
a
commissioner
there,
who
was
a
physician,
an
ob-gyn
who
took
it
upon
himself
to
try
to
lower
the
c-section
rates
in
arkansas
and
almost
single-handedly
would
go
from
hospital
to
hospital
system
to
work
on
trying
to
improve
those
numbers.
We
know
liability
plays
a
factor
for
that
for
us
here
in
kentucky
in
that
regard
as
well,
but
whatever
we
can
do
to
help
lower
our
c-section
rates,
get
our
outcomes
better.
We
look
forward
to
your
recommendations
from
all
three
of
you.
B
I
mean,
I
think
everybody
I
can
speak
for
everyone
here-
that
we
all
stand
ready
to
receive
recommendations
on
what
we
can
do
to
improve
these
numbers
from
a
government
perspective,
and
obviously,
I
think,
there's
you
know
some
providers
here
in
this
group
as
well,
that
whatever
we
can
do
as
colleagues
just
as
as
physicians,
I
think
we
all
want
to
see
our
numbers
improve
in
our
state
to
have
better
outcomes
for
our
patients.
We've
got
a
few
questions.
First
question
is
from
senator
adams.
H
Thanks,
mr
chairman,
and
I
don't
know
if
this
is
a
question
more
appropriate
for
dr
weeks
or
dr
white-
but
in
2018
we
passed
senate
bill
250
and
that
was
requiring
pregnant
women
to
be
tested
for
hep
c.
E
Well,
we
are
in
the
in
the
instructional
phase
to
get
physicians
to
do
that.
Our
viral-
I
don't
have
those
numbers
in
front
of
me.
I
apologize
and
we
can
get
you
a
report,
but
our
viral
hepatitis
program
is
is
looking
at
those
numbers.
We
already
knew
that
we
have
one
of
the
highest
hep
c
rates
in
the
country,
and
so
I
I
just
don't
have
numbers,
but
I
can
get
that
for
you.
I
know
the
right
people
sure
I
appreciate.
H
K
Yes,
so
really
norton's
a
lot
of
the
private
practices
and
physicians
moved
in
that
direction
years
ago,
even
before
this
initiative,
so
I'd
say
essentially,
100
of
the
patients
are
getting
hepatitis
c
testing
as
part
of
their
routine
prenatal
care,
with
updates
in
the
third
trimester,
if
appropriate,
for
the
high-risk
groups.
H
B
Thank
you
senator
before
I
go
to
the
next
question
also.
I
know
dr
white
you'd
mentioned
about
house
bill
212
and
some
of
the
data
that
you
couldn't
report.
If
you've
got
some
recommendations
on
changes
to
that
going
forward
for
next
year
that
we
need
a
change
in
there
to
make
sure
that
it's
reportable
data
that
we
can.
I
think
you
get
the
gist
of
what
I
think
the
legislature
was
trying
to
get
accomplished.
B
B
H
D
Q
Yeah,
thank
you
for
the
question
representative
burch.
I
know
your
microphone
was
off
so
just
to
summarize,
the
question
is
that,
given
the
united
states
poor
performance
on
our
quality
outcomes,
what
are
other
countries
in
the
western
world
doing
that
that
we
are
not?
I
don't
think
the
chairs
are
going
to
allow
me
the
time
to
fully
answer
that
question,
but
I'm
certainly
happy
to
have
a
discussion
with
anybody
right.
Q
I
I
will
say
that
that
it
comes
part
and
parcel
with
a
bigger
problem
within
the
u.s
healthcare
system,
which
is,
we
spend
more
per
capita
than
any
other
western
country
and
at
the
same
time
we
have
worse
outcomes
for
the
money
that
we
spend.
So
we
have
a
value
problem.
Basically
we're
not
spending
our
money
wisely.
Q
B
G
I
appreciated
you
saying
that
every
maternal
death
is
reflective
of
folks
who
don't
die,
but
struggle
with
the
same
issues,
and
we
know
that
some
women
die
from
suicide
related
to
pregnancy
and
mental
health
concerns,
and
we
have
estimates
from
one
in
three
to
one
in
five
women
struggling
with
some
kind
of
postpartum
mental
health
complications,
and
that
has
you
know
even
when
the
woman
doesn't
die,
that
has
tremendous
impact
on
child
development
to
have
a
mother,
who's
depressed
or
anxious
and
unable
to
engage
with
the
child.
G
And
I
that's
a
whole
big
big
big
topic.
I
know,
but
I
wonder
if
you
have
anything
that
any
insights
about
that
and
what
we
might
be
doing,
policy-wise
to
be
able
to
address
that
issue
more
directly.
K
I'd
like
to
make
a
couple
of
comments
about
that.
It's
it's
dr
weeks.
We
there
there
is
a
growing
awareness
of
this
condition
being
under-treated,
so
there
are
some
authorities
that
that
believe
it
is
the
most
common
pregnancy-related,
complication
and
75
of
women
who
suffer
from
this
are
are
under-treated
just
last
week
we,
the
kentucky
perinatal
association,
had
an
annual
meeting,
and
this
was
a
topic
of
discussion,
so
we
started
with
sort
of
general
education
and
promulgating
some
of
the
data
and
actually
some
of
the
information
that
says
primary
care.
K
Physicians
can
pretty
easily
screen
for
depression
and
initiate
care
again
for
the
more
complicated
cases.
We
don't
have
enough
mental
health
professionals
to
help
those
who
screen
positive,
especially
if
they've
got
a
substance,
use
disorder
or
bipolar
disease.
We
need
more
psychologists
and
psychiatrists
to
refer
to
from
a
policy
perspective.
The
the
the
mortality
review
committee
has
identified
suicide
as
a
reason
for
some
of
these
deaths.
K
K
G
Was
just
going
to
say
in
terms
of
the
75
of
women
who
are
under
treated,
we
know
that
women
of
color
black
women
in
particular,
are
disproportionately
under-treated.
So
I
that's
that's
my
understanding
anyway,
but
I'll.
Sorry,
dr
white.
E
No,
no,
I
I
again,
I
I
love
to
brag
about
the
work
that
our
team
has
done.
We
were
one
of
the
states
picked
over
the
last
couple
of
years
to
be
part
of
the
pram's
p-r-a-m-s.
That's
the
pregnancy
risk
assessment
monitoring
system
that
the
cdc
provides
where
you
we,
we
actually
contact
women
after
delivery
and
ask
them
questions
about
what
was
your
care
like?
What
did
you
experience?
That's
that's
care!
That's
data!
E
That's
not
captured
anywhere
else,
except
in
this,
so
we
are
just
now
analyzing
that
data
looking
at
what
kind
of
care
they
got.
How
did
they
feel
after
delivery?
Some
some
real
some
real
information
from
the
patients
themselves
about?
Did
they
have
depression?
How
were
they
treated
for
that?
Where
were
they
ignored,
as
as
you
said,
and
we
also
then
got
extra
funding
to
do
an
opioid
screening?
E
So
if
these
women
did
have
a
substance
use
disorder,
they
agreed
to
another
phone
call
contact
six
months
after
the
first,
so
we
contacted
him
six
months
after
delivery
and
then
another
six
months
later
to
get
some
information.
So
we're
going
to
have
some
really
robust
data
to
use
to
help
us
as
we
design
what
we
need
to
do
next.
One
thing
that
we're
doing
to
kind
of
address
what
representative
burch
was
talking
about
is
we
are
in
the
process.
E
We
just
spoke
about
it
yesterday
at
the
steering
committee
of
developing
a
in
in
the
kentucky
perinatal
quality
collaborative
in
kipp
qc,
a
maternal
mortality
review
subcommittee,
because
every
patient
we
look
at
in
the
maternal
mortality
review
committee,
there's
a
spot
where
we
list
recommendations.
What
would
happen
if
this
woman
could
have
kept
her
from
dying?
E
Those
recommendations
really
have
no
place
to
go,
and
so
we're
going
to
take
them
at
kip
qc
and
look
at
those
recommendations
and
say:
is
that
is
there
a
program
anywhere?
That's
just
maybe
not
working.
What
could
we
do?
What
recommendations?
Could
we
make
to
kind
of
put
that
on
steroids
and
make
it
work,
so
we're
going
to
really
try
to
take
the
work
that
the
mmrc
is
doing
and
actually
give
it
legs,
and-
and
I
know
that
as
dr
week
said-
because
he
is
on
the
mmrc
committee
and
thank
you
publicly
for
doing
that.
E
Dr
weeks
he's
the
the
vice
chair
of
that
committee
to
actually
make
this
actionable
now
and
and
that's
going
to
be.
A
big
issue
is
postpartum
depression
and
mood
disorders.
B
J
G
Pregnant
women
come
in
that
have
had
no
prenatal
care
that
just
show
up
at
the
you
know.
They
are
maybe
one
one
time
at
a
clinic
or
something
I
think
you
know.
No,
no
access
to
prenatal
care
is
probably
a
big
factor
in
issues.
E
G
G
K
N
H
Thank
you,
mr
chair.
Thank
you
very
much
for
this
great
presentation.
This
is
very
interesting
and
informative
and
and
timely.
I
appreciate
the
work
of
the
kentucky,
perinatal
quality,
collaborative
and
and
all
of
your
work.
I
I
just
have
a
couple
of
clarifications
and-
and
I
agree
completely
that
you
know
really
collecting
this
data
and
understanding
understanding
the
data
is
only
going
to
lead
to
better
policy
decisions
and
and
prioritizing
any
recommendations
that
come
out
and
re-evaluating
the
systems
of
care
and
the
appropriateness
of
the
systems
of
care.
H
So
I
appreciate
your
comment,
dr
goldberg,
about
that.
But
dr
white,
you
mentioned
a
maternal
care
for
substance,
use
disorders.
Bundle.
Can
you
expand
upon
that?
A
little
bit?
Is
that
already
implemented.
E
Well,
no,
no,
we
just
became
an
aim
state
in
march,
and
so
we
are
meeting
with
the
aim
folks
they're,
going
to
help
us
with
different
types
of
evidence-based
interventions
that
we
can
then
go
from
hospital
to
hospital.
We've
actually
are
going
to
start
here
in
another
month
or
two
with
six
hospitals
that
are
going
to
be
our
first
pilot
projects
to
take
those
interventions
and
see
how
can
they
seamlessly
in
integrate
that
into
the
work
that
they're
doing
so
we
can
find
something
that
works
well
in
our
kentucky
hospital.
E
H
That
sounds
wonderful.
I
I
look
forward
to
hearing
those
recommendations
and
then
another
really
quick
clarification
did
you
did
someone?
Somebody
was
talking
about
the
number
of
psychiatrists
and
I
guess
child
psychiatrist
in
our
state.
What
was
that
number
again,
I'm
trying
to
get
my
son
to
come
back
to
kentucky
that
was
dr
alvarado
350.
B
I
K
Yes,
we,
it
could
be
difficult
to
get
a
handle
on
how
often
that's
really
happening
during
the
pregnancy,
but
we've
seen
several
women
that
we
think
are
suffering
from
that
in
unfortunately,
in
most
instances,
they're
asked
they're
asked
about
it,
but
haven't
admitted
to
having
issues
and
therefore
haven't
gotten
any
special
care
or
referrals
to
places
for
protection,
and
we've
had
a
couple
of
homicide
victims
that
had
probably
domestic
violence
ahead
of
the
final
event.
K
Whether
or
not
that's
greater
than
the
patient
population
in
general,
I
don't
I'm
not
aware
of
any
studies
that
have
investigated
that,
but
but
to
your
point.
Yes,
it's
well
known
that
women
who
suffer
from
domestic
abuse
are
most
likely
to
die
or
be
killed
during
the
pregnancy.
B
Very
good,
thank
you
very
much
doctors.
We
appreciate
your
time
today.
We
know
all
of
you
are
very
busy
appreciate
you
coming
and
testifying
before
our
committee.
We
look
forward
to
your
recommendations
in
the
upcoming
year
and
the
next
session
ahead
and
helping.
However,
we
can
so
thank
you
very
much
for
the
work
that
you're
doing.
Thank
you.
The
last.
B
Agenda
is
another
very
important
topic.
I
want
to
make
sure
we
give
some
definite.
Some
time,
too,
is
a
presentation
on
cytomegalovirus
in
newborns.
We
have
a
couple
of
individuals
here
today.
Sarah
roof
is
executive,
director
of
kentucky
hands
and
voices
and
sarah
streevil
who's,
a
parent
and
they're.
Both
here
today
to
talk
a
little
bit
about
cmv
in
newborns.
I
know
there
was
a
proposal
or
a
bill
that
had
been
filed
by
senator
wise
this
past
year.
B
We
wanted
to
make
sure
we
had
some
discussion
around
this
topic
and
again
some
awareness
around
this
disorder
and
again,
as
I
mentioned
earlier,
a
lot
of
times.
Physicians
and
practitioners
are
learning
about
things
all
the
time,
and
sometimes
it
just
takes
a
reminder
of
what
these
infections
can
do
to
our
children
to
have
them
be
friend
of
mind.
So,
ladies,
if
you'd
like
to
introduce
yourselves
to
the
record
officially
and
then
begin
your
testimony.
S
R
There
we
go
thank
you
for
having
us
I'm
sarah
roof.
I
am
with
kentucky
hands
and
voices,
which
is
a
statewide
organization
that
supports
families
of
children
who
are
deaf
or
hard
of
hearing.
I
also
serve
on
the
advisory
board
for
the
early
hearing
detection
intervention
program
in
kentucky
and
the
family
advisory
council
for
national
center
for
hearing
assessment
and
management
out
of
utah
state,
but
primarily
today,
I'm
here
as
a
mother
and
as
sarah's
cheerleader
and
moral
support
and
clicker
for
the
presentation.
So
thank
you
for
having
us.
T
Hello,
thank
you
so
much
for
having
us
today
and
for
letting
me
speak.
My
name
is
sarah
and
I
work
with
hands
and
voices
as
a
guide
by
my
side
and
I'm
also
a
community
chair
alliance
for
the
national
cmv
foundation
and
but
most
of
all,
I'm
bella's
mother
and
that's
what
I'm
here
to
talk
about
is
bella
and
air
initiatives
with
cycle
neglivirus.
R
I'll
add,
while
this
is
coming
up,
I
don't
see
it
on
here,
so
we
are
here
as
a
part
of
a
larger
committee
of
physicians
from
university
of
kentucky
university
of
louisville,
also
representatives
from
the
national
cmv
foundation,
kentucky
commission
for
the
deaf
and
hard
of
hearing
and
the
kentucky
council
of
development
developmental
disabilities,
among
others.
But
you
get
two
moms
today,
so
we're
happy
to
answer
as
many
questions
as
we
can
and
anything
else
beyond
that
we
will
field
to
some
of
our
physicians
we've
in
the
interest
of
time.
R
We
have
kind
of
done
our
presentation
a
little
bit
differently,
so
we'll
go
through
a
powerpoint
and
then
we'll
also
share
a
video
of
a
shortened
piece
of
a
webinar
that
we
did
earlier
this
month
and
I'll
also
mention
dr
white
referenced,
the
kentucky
pqc
and
they
are
also
doing
a
webinar
on
cmv
later
in
july.
So
a
lot
of
interest
surrounding
that
right
now,.
T
T
However,
she
was
born
with
symptoms
at
birth.
She
was
born
at
a
local
hospital.
Therefore
they
was
not
sure
what
was
going
on.
She
was
stabilized
and
then
life
flighted
to
the
nicu.
It
took
about
three
days
for
us
to
get
the
diagnosis
and
she
was
diagnosed
with
cyclomegalovirus,
also
known
as
cmv
come
to
find
out.
T
T
I
think
you
just
clicked
back:
no
okay,
so
we'll
go
through
it
quicker.
She
had
brain
calcifications,
which
called
seizures.
She
ended
up
with
a
seizure
disorder
known
as
linux
gastat
syndrome,
which
is
a
very
rare
but
yet
severe
seizure,
disorder,
cortical
vision,
impairment.
She
was
legally
deaf
in
both
ears.
She
received
cochlear
implants
for
those
she
had
respiratory
failure,
that
was
as
part
of
cerebral
palsy.
So
a
lot
of
these
complex
issues
and
disorders
would
work
against
each
other
and
just
create
perfect
storms
throughout.
T
But
that's
not
who
bella
was
bella,
had
the
most
beautiful
blue
eyes
and
infectious
laugh.
So
she
would
get
to
giggling
in
the
hospital
which
we
spent
a
lot
of
time
in
the
hospital
and
doctors
would
come
in
just
to
see
who
was
laughing
and
to
watch
her
super
nosy.
She
had
to
know
everything
we
put
her
cochlears
on
and
she
never
wanted
to
take
them
off,
because
she
had
to
hear
and
see
everything
she
had
the
most
magnetic
personality.
T
T
T
T
Bella
struggles
increased,
so
her
seizure
activity
started
to
get
a
lot
worse.
We
had
it
controlled
for
about
six
months
and
then,
after
that,
it
just
got
worse
and
worse.
So,
at
the
end,
we
were
having
approximately
10
seizures
an
hour.
T
She
needed
more
and
more
medication.
It
got
to
a
point
where
we
wasn't
sure
if
it
was
going
to
be
the
medication
that
took
her
or
the
seizures
autonomic
dysfunctioning
got
really
bad,
so
autonomic
dysfunctioning
just
caused
her
body
to
have
extremely
high
fevers
for
no
good
reason:
respiratory
issues,
digestive
issues,
all
that
fell
under
the
autonomic
dysfunction
and
continued
to
get
worse.
We
spent
at
least
six
months
from
february
of
2018
to
june
2018
in
the
hospital,
and
in
that
time
we
received
four
major
procedures.
T
So
we
lost
bella
in
april
of
last
year
so
april,
the
7th
she
succumbed
to
those
disorders,
and
since
then,
we
have
determined
to
educate
others
about
cmv
advocate
for
bella's
bill
and
create
a
community
for
cmv
families.
T
T
T
Rowan
is
only
four
months:
old
roland
is
one
of
a
twin
and
his
mother
was
a
pharmacist
and
she
was
home
pregnant
with
a
toddler
during
covet.
However,
she
was
not
reminded
or
informed
about
any
of
the
precautions
to
take
while
at
home
with
a
toddler.
Toddlers
are
shedding.
Cmv
80
of
them
are
shedding
it
and
we
don't
know
it.
T
Kailyn
is
25.,
her
mother
worked
as
a
cna
cnas
child
care
workers,
nurses.
All
these
are
very
high
risk
categories.
She
worked
as
a
cna
that
actually
had
an
outbreak
in
1996
of
cmv.
However,
she
didn't
know
what
it
was
they
didn't
tell
her,
and
nor
did
they
give
her
precautions
or
procedure
or
precautions
for
her
unborn
child,
and
this
is
the
results
her
family
could
have
been
spared.
If
she
had
known
june
is
six,
she
was
was
not
diagnosed
at
birth.
She
was
not
diagnosed
after
she
held
hearing
tests.
T
She
was
not
even
diagnosed
after
she
began
having
infantile
spasms.
She
was
three
months
old
before
she
was
diagnosed
and
therefore
she
lost
out
on
some
of
those
early
interventions,
the
antibody
antiviral
medications
that
could
have
been
given
at
birth.
If
she
was
diagnosed
sooner,
we
could
have
changed
things
for
june.
T
T
T
Destiny's
five,
her
mother
was
a
nurse.
Nurses
are
high
category
but
again
they're
also
trained
as
a
trained
medical
professional.
She
said
she
was
taught
very
little
about
cmb
very
little
and
she
said
it
surprises
her
how
little
not
only
her,
but
all
her
colleagues
knew
about
this
awful
disease
that
has
took
so
many
lives.
T
The
burden
of
care
for
these
kids
is
so
great
that
we
can't
do
it
alone,
so
this
family
actually
had
to
leave
kentucky
in
order
to
be
closer
to
extended
family,
to
be
able
to
get
the
medical
care
and
the
day-to-day
care
that
he
needed,
and
this
is
just
a
few
of
our
stories
like
I
said,
I've
connected
39
families.
We
have
a
few
others,
but
you
can
see
this
the
counties
here.
We
have
these
divide
up
into
19
counties.
Seven
of
those
have
passed.
T
T
T
And
I
broke
that
down
just
a
little
bit.
These
numbers,
the
health
conditions
on
the
left
there.
The
health
conditions
were
so
great
that
I
couldn't
put
all
the
numbers
on
here,
so
I
narrowed
it
down
to
like
the
top
10
so
that
you
could
see
and
that
bottom
is
developmental
delays.
You
can
see
83
of
these
kiddos
all
had
developmental
delays,
hearing
loss,
vision,
loss
seizures,
and
this
is
just
our
survey.
This
isn't
something
from
someone
else
or
some
made-up
numbers.
This
is
actually
the
the
families
that
we
connected.
T
T
This
is
actually
part
of
what
we
had
to
purchase
for
bella
and
what
was
purchased
through
medicaid
for
bella.
So
you
can
look
and
see.
This
is
just
average
cost.
She
spent
at
least
a
hundred
days
in
the
hospital.
That's
right
around
four
hundred
thousand
dollars
and
then
we're
just
talking.
A
hospital
stay
there:
medication.
T
T
Handicapped
vehicles,
respiratory
vests
wheelchairs,
twelve
thousand
dollars
for
a
wheelchair
specialty
beds,
coffices
floor,
setters
standards,
oxygen
again,
the
list
I
had
a
whole
page
by
the
time
I
got
done
sitting
down
and
just
trying
to
itemize
everything
ouch,
but
this
is
the
cost
that
these
families
are
looking
at.
We're
going
to
now
show
a
video.
T
This
first
one
will
let
you
hear
from
some
of
our
professionals.
That's
on
our
team.
T
Laura
and
then
after
this
we'll
introduce
you
to
some
of
the
families,
and
you
can
see
a
slideshow.
R
S
S
S
Perhaps
the
most
important
thing
shown
on
this
slide
is
that
congenital
cmv
is
more
common
than
the
29
combined
metabolic
and
endocrine
disorders
in,
what's
referred
to
as
the
recommended
united
states
newborn
screening
panel.
So
we
think
about
screening,
for
infant
metabolic
screening,
for
our
state
cmv
is
more
common
than
the
21
29
disorders
that
are
already
included.
S
S
Until
then,
the
measures
are
largely
common
sense,
they're
easy
to
do
so.
The
cdc
and
others
have
endorsed
strict
hand
washing
with
soap
and
water.
For
those
who
come
to
contact
with
young
children,
we
know
that
pregnant
women
who
have
young
children
in
the
home
work
with
young
children
at
the
highest
risk
for
having
cmv.
S
There
are
a
lot
of
studies
in
children,
attending
daycare
or
child
care,
centers
of
both
the
children
and
the
parents
of
children
attending
daycare,
and
they
show
that
infection
is
quite
common.
It's
spread
by
saliva
and
urine,
so
our
child
care
workers
should
be
using
what
we
refer
to
as
standard
precautions.
S
Other
common
sense
recommendations
are
shown
here
to
refrain
from
sharing
utensils
drinks
or
toothbrushes
in
children
under
the
age
of
six.
The
last
theme
is
that
cmv
is
serious
every
hour.
One
child
is
permanently
disabled
by
cmv.
It's
thought
to
be
the
leading
non-genetic
cause
of
childhood
hearing
loss.
S
A
Good
afternoon
my
name
is
dan
stewart,
I'm
a
fellow
of
the
american
academy
of
pediatrics,
I'm
a
professor
of
pediatrics
and
international
pediatrics
at
norton
children's
hospital
and
the
university
of
louisville
school
of
medicine.
I'm
the
medical
director
of
the
ecmo
program
here
at
norton
children's
hospital.
A
I've
been
the
director
of
our
neonatal
intensive
care
unit,
which
is
a
level
four
for
approximately
20
years
recently,
stepping
down
from
that
role.
So
today
I
have
the
privilege
of
talking
to
you
about
universal
screening
for
a
congenital
solar
megalog
virus.
So
cmv2
is
really
is
really
one
of
the
leading
congenital
infections
worldwide.
A
So
congenital
cmv
infection
meets
many
of
the
criteria
for
screening,
allowing
for
early
detection
and
intervention
to
improve
clinical
outcomes.
This
is
very
similar
to
when
the
state
of
kentucky
approved
a
universal
newborn
hearing
screening.
So
what
are
the
criteria
for
universal
screening
program?
Well,
you've
got
to
evaluate
the
incidence,
the
disease
as
well
as
the
prevalence.
The
instance
is
how
many
new
cases
have
been
diagnosed,
but
prevalence
is
how
much
exists
in
society.
A
So
we
look
at
both
the
instance,
as
well
as
the
prevalence
of
the
disease
or
condition,
and
then
diagnosis
do
we
have
a
reliable
way
of
making
the
diagnosis
this
has
evolved,
as
I
will
talk
about
in
some
subsequent
slides
over
the
last
few
years,
and
I
think
we're
at
a
point
now
where
we
can
reliably
make
the
diagnosis
and
then
is
there
treatment
available?
Well,
certainly
they
are
so.
Antiviral
agents
are
now
available
speech.
G
G
G
G
G
R
We
can't
change
bella's
story.
We
can't
change
the
stories
of
those
that
you
saw
on
this
screen,
but
we
can
change
the
stories
for
future
kentuckians
and
we're
asking
for
your
help
with
that.
As
we
push
for
awareness
and
education
to
pregnant
mothers
to
physicians,
we
also
are
asking
for
universal
screening
because,
as
you'll
see,
that
is
coming
and
we
would
like
for
kentucky
to
lead
on
that
issue
instead
of
follow.
Thank
you.
C
B
If
you're
watching
on
zoom,
you
might
want
to
mute
your
microphone
there,
we
do
have
one
comment:
senator
wise.
D
Thank
you,
mr
chairman,
mr
and
I
want
to
thank
you
for
the
opportunity
to
present
this
during
the
interim
and
also
co-chair
moser.
I
know
in
the
session
it'd
be
very
difficult
to
do
something
like
this,
with
how
busy
we
get
with
bills,
but
to
focus
in
on
your
story
and
the
stories
of
countless
other
families.
I
want
to
thank
both
of
you
for
your
advocacy,
sarah
roof
and
and
sarah
being
a
constituent,
my
district.
Thank
you
for
your
strength
today.
D
D
G
R
There
are
currently
no
states
that
are
doing
universal
screening.
It
has
been
placed
before
the
us
committee
to
to
do
universal
screening
from
a
national
standpoint,
and
that's
why
we
would
like
to
see
kentucky
lead
on
this
issue.
There
are
some
states
that
are
doing
targeted,
screening
and
university
of
kentucky
does
targeted
screening
as
well.
So
if
a
newborn
is
in
the
nicu
or
fails
their
newborn
hearing
screening,
then
they
will
automatically
do
a
targeted
screening
there
as
well.
D
B
H
Thank
you,
mr
chair.
Sorry,
I,
as
a
former
nicu
nurse,
I
I
am
keenly
aware
of
this
issue
and
thank
you
very
much
for
your
presentation
today.
I
I
can't
imagine
how
strong
you
have
to
be
to
come
in
and
share
the
story.
So
thank
you.
Do
you
know
the
cost
of
universal
screening
and
why?
Why
aren't
we
considering
this.
R
I
don't
know
that
there's
an
exact
cost,
yet
it
is
rather
costly.
I
know
when
the
bill
was
presented
this
session
it
was
looked
into.
I
think
the
issue
is
there
is
that
upfront
cost
and
as
with
a
lot
of
things,
it
comes
with
a
lot
of
costs
on
the
back
end.
So
even
some
of
these
people
that
presented
earlier
in
the
long
term,
they
say
that
it
will
actually
be
either
cost
savings
or
cost
neutral.
T
E
P
H
Okay
and-
and
so
I'm
not
sure
if
you
know
the
answer
to
this
question-
maybe
dr
goldberg
would
know
this.
Is
there
prenatal
testing
for
cmv
or
any
antiviral
treatment.
T
Not
for
the
infant
there
is
for
the
mother,
so
we
can
ask
that
we
be
tested
absolutely.
Q
Yeah
from
a
technical
standpoint,
you
can
screen
for
cmv
infection
through
a
cervical
swab.
There
is
no
data
yet
supporting
the
utility
of
that.
G
Thank
you,
mr
chairman.
I'm
glad
you
sat
down
there
doctor.
My
question
deals
with
cellular
immunity,
since
you
pictured
all
children
of
this
study
to
see
if
there's
a
breakdown
in
cd4
or
anything
like
that.
R
Well,
and
and
no
see
most
people,
it's
a
high
percentage
that
gets
cmv
in
their
lifetime
very
high,
it's
just
when
a
woman
who
is
pregnant
contracts
it
and
passes
it
on
to
her
newborn
child.
Where
you
see
these
other
effects
in
you,
it's
going
to
present,
probably
as
a
common
cold
or
even
in
a
young
child.
It's
when
a
pregnant
woman
gets
it
right.
G
B
I
can
chime
in
here,
if
you
don't
mind
so
with
kids-
remember
their
first
four
to
five
months,
they're
completely
dependent
on
maternal
antibodies,
they've
received
from
mom
to
fight
infections.
If
kids
are
going
to
have
immunity
problems,
they're
not
going
to
see
those
until
they're
about
four
to
five
months
of
age,
so
a
lot
of
kids
will
be
doing.
B
That
isn't
a
sufficient
enough
antibody
level
that
virus
can
take
off
and
they
don't
really
have
an
adequate
antibody
system
to
help
knock
that
out
when
they're
newborns.
So
a
lot
of
that
is
is
a
kind
of
a
can.
You
know
it's
after
they're
born
is
the
issue
that
the
hard
part
with
some
of
these?
Some
of
the
concerns
we
had
with
the
bill.
Originally
there
is
cost
there's
one
state.
I
think
the
state
of
indiana
does
across
the
board.
B
Screenings
on
every
newborn
that
comes
through
a
lot
of
states
are
doing
awareness
to
make
sure
that
moms
are
aware
that
they're,
you
know
they
can
be
concerned
with
that
some
are
doing
targeted
screenings.
That
was
always
my
impression,
but
the
state
does
not
require
that
here,
because
I
was
always
trained
at
uk
that
we
did
if
a
child
failed,
an
algo
or
a
hearing
test,
they
got
an
automatic
screen
for
this,
but
that
isn't
being
done
necessarily
across
the
board,
so
it
becomes
a
cause.
B
Then
there's
also
false
positives
kids,
who
might
test
positive,
don't
really
have
it
are
going
to
get
a
full-blown
treatment
of
something.
What's
the
consequences
of
that?
We
don't
know
that
either.
So,
there's
a
lot
of
unanswered
questions.
It's
important
to
bring
this
topic
for
discussion.
We
thought
would
be
important
to
bring
it
here.
We
can
all
hear
about
it.
B
I'm
sure
it'll
come
back
for
us
to
discuss
further,
but
to
know
that
it's
on
our
radar
and
a
lot
of
states
are
taking
action
to
either
either
increase
awareness
to
targeted
screenings
or
to
do
full-blown
screenings
across
them.
B
So
moms
can
transmit
antibodies
through.
You
know
breastfeeding
and
that's
that's
always
important
again.
It
just
depends
on
how
big
of
an
antibody
response,
but
a
lot
of
the
maternal
you
know,
babies,
defense
are
going
to
be
some
there's
a
lot
of
that's
transmitted
orally
for
oral
defense
for
kids.
We
know
that
kids
do
have
less
infections,
bacterial
infections
in
particular,
I'm
not
sure
about
cmv,
exactly
if
that's
actually
reduced.
Thank
y'all.
I
Yeah
senator
berg.
Thank
you.
Thank
you
guys,
real
quick
question.
My
understanding
with
cmv
is
that
it's
that
the
children
that
are
affected
this
is
predominantly
an
in-utero
infection.
These
children
are
already
born
with
the
the
microcalcifications
and
the
microcephaly
and
the
the
brain
development
abnormalities.
So
by
the
time
we're
screening
these
children
they
either
have
the
sequelae
of
the
disease
or
they
don't
and
and
cmv
is
extremely
you
know
it's
everywhere.
I
Everybody
has
it.
It's
only
a
certain
small
subset
of
children
that
actually
become
affected
by
the
disease
in
utero.
My
question
honestly
and
and
and
believe
me,
your
presentation
is-
is
awesome.
My
heart
goes
out
to
you
and
your
family
and
everything
you
have
been
through,
but
but
as
a
health
care
provider,
you
know
what
I
have
to
look
for
is:
what
are
we
going
to
do
differently?
I
How
is
this
going
to
impact
us
and
if
we're
screening,
every
child,
it
seems
to
me
that
the
cost
of
that
and
the
potential
cost
of
false
positives
as
well
as,
as
you
know,
even
potentially
false
negatives,
the
the
the
deed
is
done
by
the
time
that
child
is
born.
They
are
either
affected
with
this
or
they're
not
going
to
be
so
to
automatically
screen
every
child.
When
we
can
wait
a
couple
of
weeks
and
figure
out
who's
got
the
hearing
losses
who's,
showing
this
demand
based
on
physical
examination.
I
T
I'd
like
to
answer
that
the
anti-virals
that
they
are
given
at
birth
can
actually
prevent
or
slow
down
the
development
of
hearing
loss
and
vision
loss,
so
those
are
actually
degenerative.
T
So,
yes,
the
brain
calcifications,
there
was
nothing
they
could
do
about
those,
but
the
hearing
loss
is
degenerative,
it's
almost
as
if
they
were
born
with
old
people's
ears,
and
so
it
can
degenerate
within
a
year
and
it
could
be
gone,
but
if
they
could
start
those
antivirals
at
birth,
we
could
possibly
prevent
that
and
then
the
vision
loss
is
often
diseased
eyes.
If
they
can
catch
that
early
on.
We
could
prevent
little
solomon
lost
an
eye
because
of
this
he
might
not
have
lost
that
eye.
T
If
he
had
got
the
antivirals
that
prevented
this,
we
can't
stop
everything.
No
and
it
needs
to
be
stopped
on
the
front
end.
Yes,
but
this
is
what
we
could
do
right
now
and
a
lot
of
these
mothers.
They
knew
nothing
about
cmv,
we're
educated
on
down
syndrome,
we're
educated
and
all
these
other
things,
but
we
knew
nothing
about
cmv
until
we're
handed
a
baby
and
said
here.
R
There's
been
the
developmental
delays
and
the
costs
that
come
with
that
because
they
go
undiagnosed
and
you
really
can't
officially
diagnose
them
after
about
three
weeks,
but
they
could
have
progressive
hearing,
loss
or
other
developmental
delays
on
down
the
road.
And
so
that's
why
it's
important
and
that's
why
there's
a
push
for
universal
is
to
get
some
of
those
who
are
missed
and
then
progress
later.
I
As
I
follow
up
what
I
have
not
seen-
and
I've
actually
looked
for
this,
so
if
you
all
could
provide
this
for
me,
I
have
not
seen
data
that
says.
The
early
use
of
antiviral
in
the
first
three
weeks
after
birth
protects
these
children
from
any
of
the
long-term
sequelae
of
this
disease.
Does
that
exist?
B
Very
good,
okay.
Well,
very
good!
There's
no
last
question.
Well,
thank
you
all
very
much
for
your
presentation.
We
appreciate
that
you
know
and
a
touching
tribute
to
all
those
children
who
are
suffering
or
have
suffered
from
that
disorder.
I
want
to
remind
the
members
our
next
meeting
will
be
on
july.
21St
at
1
p.m.