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B
Thank
you
so
good
afternoon,
everyone
and
welcome
to
the
march
18th
meeting
of
the
senate
committee
on
health
and
human
services.
We're
glad
to
have
you
here.
We
have
a
full
agenda
today.
Just
by
way
of
flow
we'll
be
hearing
sb,
168,
sb,
175,
nsb
251,
then
we
will
be
doing
a
work
session
on
sb,
49
and
sb
156.
B
We
may
take
a
break
in
between
bills
to
do
the
work
session
just
so
we
can
allow
some
people
to
go
home,
but
in
the
meantime
that's
the
that's
the
run
of
show.
If
you
will
just
a
reminder
to
everybody
that
we
are
doing
these
meetings
virtually
and
therefore
the
public
is
not
able
to
enter
the
building.
B
Many
of
you
have
participated
already,
but
just
in
case
this
is
your
first
hearing.
If
you
want
to
know
how
you
can
participate,
please
go
to
the
nevada
legislature
website.
You
can
just
google
it
it
pops
right
up
and
there's
a
health
tab,
help
tab
on
the
top
of
every
page.
That
will
help
you
register
for
the
meeting
so
that
you
can
do
public
testimony
if
you'd
like
or
you
can
send
in
written
testimony,
and
we
can
get
it
onto
the
record
or
you
can
participate
in
an
opinion
poll.
B
I
think
what
I'll
do
is
I'm
just
going
to
note
for
the
record
that
myself,
senator
and
senators
hardy,
kieker
and
harris
are
here
and
please
mark
senator
spearman,
excused
and
market
her
present
when
she
joins
all
right
with
that.
I'd
like
to
invite
senator
roberta
to
present
sb
168.
C
Thank
you
so
much
good
afternoon,
chair
ready
vice
chair
spearman
and
members
of
the
hhs
committee.
My
name
is
roberta
lang
and
I
am
the
center
representing
district
7
in
las
vegas
and
henderson.
Today
I
would
like
to
introduce
senate
bill
168,
which
deals
with
two
items:
cannabis,
curbside,
pickup
and
cannabis,
packaging
and
labeling
in
your
packet.
You
will
see
an
amendment
you're,
replacing
sb
168
with
the
amendment
language.
C
We
are
presenting
this
bill
and
amendment
together
in
cooperation
with
the
cannabis
compliance
board.
Following
the
presentation
we
are
available
for
questions
as
well
as
a
ccb
executive
director,
tyler
klimas
and
technical
questions
can
be
addressed
to
matt
walker,
I'd
like
to
introduce
lake
martin
and
she
will
walk
you
through
the
bill
presentation.
C
D
You
senator
lange.
Thank
you
good
afternoon,
chair
ready
and
members
of
the
committee.
My
name
is
lake.
Martin,
I'm
the
executive
director
of
the
nevada,
dispensary
association,
the
nevada
dispensary
association,
represents
the
majority
of
dispensary
dispensary
owners
in
nevada.
Briefly,
I
will
summarize
what
the
bill
and
amendment
intend
to
do
and
then
we'll
go
section
by
section,
we'll
cover
curbside,
pickup
first
and
then
move
to
packaging
and
labeling.
D
So
this
bill
would
allow
dispensaries
to
continue
to
provide
curbside
pickup
to
customers.
Curbside
pickup
was
authorized
by
governor
sislock's
declaration
of
emergency
directive
16
issued
on
april
29
2020.
the
cannabis
compliance
board
provided
written
guidance
for
how
dispensaries
should
implement
curbside
pickup
on
may
1st
2020.,
initially
curbside
pickup
helped
dispensaries
comply
with
covid19
restrictions,
reducing
in-store
capacity
as
it
turns
out,
customers
really
liked
the
convenience
of
curbside
pickup.
D
It's
especially
convenient
for
elderly
customers
or
medical
patients
who
have
difficulty
or
prefer
not
to
leave
their
car
dispensaries,
asked
the
nda
to
work
on
making
curbside
pickup
a
permanent
feature.
The
ccb
agreed
that
curbside
pickup
has
worked
out
well
and
the
ccb
and
the
nga
have
worked
together
on
this
legislation.
D
The
proposed
bill
language
would
allow
for
curbside
pickup
and
authorize
the
ccb
to
adopt
regulations
to
implement
it.
Those
regulations
will
be
just
like
what's
being
currently
implemented
under
the
current
guidance.
Some
of
the
features
of
curbside
pickup
include
designated
spaces
security
cameras
with
a
direct
line
of
sight.
No
one
under
21
years
of
age
may
be
in
the
vehicle,
and
orders
must
be
placed
in
advanced
in
advance.
The
proposed
language
of
the
bill
will
also
allow
local
governments
to
determine
whether
curbside
is
appropriate,
based
on
the
location's
characteristics
or
compliance
with
other
local
regulations.
D
Moving
to
labeling
the
bill
removes
language
in
the
statute.
The
amendment
in
particular
removes
language
in
the
statute
that
would
limit
the
ability
of
the
ccb
to
make
common
sense
reforms
to
the
nevada,
cannabis
compliance
regulations
dealing
with
packaging
and
labeling.
At
the
same
time,
none
of
the
proposed
language
would
alter
warnings
or
other
information
that's
required
to
be
conveyed
in
statute.
D
The
reason
for
the
proposed
revisions
is
to
allow
the
ccb
and
stakeholders
to
develop
packaging
and
labeling
regulations
that
have
clear
easy
to
understand
definitions
that
clearly
convey
safety
information
and
that
are
in
line
with
best
practices
and
safety
standards.
Many
of
the
packaging
and
labeling
regulations
have
not
been
updated
in
years
and
therefore
do
not
reflect
modern
production,
new
safety
standards
or
public
health
expertise.
D
Now
I
want
to
direct
you
to
the
proposed
amendment.
As
we
go
section
by
section
section,
one
of
the
amendment
adds
specific
language
to
nrs
678,
a
450
authorizing
the
board
to
adopt
regulations
relating
to
packaging
and
labeling
of
cannabis
products.
The
board
has
already
adopted
regulations
to
this
effect
under
the
authority
given
to
the
board
in
other
sections
of
this
statute,
but
this
language
seeks
to
make
it
all
the
more
clear
section.
D
2
amends
nrs678b
to
add
the
language
in
section
3
authorizing
curbside
pickup,
section
3
explicitly
allows
for
curbside
pickup
at
cannabis
sales
facilities
and
states
that
the
ccb
shall
adopt
regulations
necessary
for
implementation.
Subsection
2
also
provides
the
local
government's
retain
authority
to
determine
whether
curbside
pickup
is
appropriate
at
a
particular
location.
D
D
D
Similarly,
where
under
subsection
7
there's
a
list
of
warnings
that
must
be
conveyed
by
written
notification,
this
bill
seeks
to
revise
that
language
to
state
instead
that
the
information
shall
be
conveyed
in
a
manner
to
be
determined
by
the
board.
That's
to
allow
the
board
to
adopt
regulations
that
factor
in
the
expertise
and
guidance
from
other
jurisdictions
regarding
how
warnings
are
best
conveyed
section.
5
does
not
remove
any
language
from
the
statute;
it
merely
deletes
language
from
the
bill,
as
we've
agreed
with
the
ccb.
B
E
Thank
you,
madam
chair.
Is
there
any
limit
on
the
advertising
or
signage
that
comes
with
this
curbside
pickup.
D
It's
an
hardy
lake,
martin,
nevada,
dispensary
association
for
the
record.
I
would
actually
seek
to
have
the
ccb
comment
on
their
guidance
if
they're
available
related
to
what's
currently
required
by
the
under
or
say
pickup
under
the.
F
Sure
thank
you,
chair,
tyler
clements,
for
the
record
and
thank
you
senator
for
the
question.
We'll
continue
this
line
and
I
will
ask
cara
cronkite,
who
heads
audit
inspections
in
my
agency
to
talk
about
some
of
the
restrictions
for
curbside
that
currently
exists.
A
Thank
you,
director,
climus
and
good
afternoon,
charity
yeah.
We
we.
D
A
E
D
Sure,
senator
I'm
sorry
kara
I'll.
Let
you
go
kara
cronkite.
A
For
the
record,
yes,
we
are
keeping
with
the
current
requirements
for
advertising
and
signage
that
currently
exist.
E
Thank
you.
I
appreciate
the
amendment
seems
to
most
of
it
seems
to
make
a
lot
of
sense
to
me.
The
insertion
of
of
the
amended
language
regarding
the
labeling
of
products
that
are
for
sale
and
removing
the
language
as
it
relates
to
production
and
the
labeling
of
that
production.
So
is
this
just
to
recognize
how
product
flows,
through
the
sort
of
you
know,
production,
manufacturing
and
distribution
change
chain?
I'm
sorry
so
that
labeling
is
really
focused
on
the
consumer
rather
than
every
step
in
the
process.
D
E
Appreciate
that
and
then
to
follow
up
on
that
on
the
amendment
page,
eight,
the
top
of
aj
one
says
we're
striking
written
notification
of
the
following
information
and
then
just
say
that
the
cannabis
sales
facility
shall
convey
the
following
information
to
consumers.
Is
there
anything
that
says
that
can't
be
just
verbal
that
you
can't
just
or
that
you
can't
just
have
a
sign
posted
on
the
wall
behind
the
register
or
something
like
that
that
there
has
to
be
an
actual
delivery
of
content.
D
Thank
you,
senator
lake
martin,
about
a
dispensary
association
for
the
record.
The
intention
is
to
make
sure
that
the
information
is
conveyed
in
the
best
way
possible
to
the
consumer.
So
there
isn't
an
intent
that
it
would
be
on
a
sign
or
verbally
conveyed
what
we're
sort
of
looking
at.
D
Is
it
a
printout
at
the
point
of
sale
versus
a
sheet
that
is
slipped
into
the
exit
bag
versus
a
label
on
the
product
itself,
and
so
so
leaving
it
to
the
ccv
to
handle
that
in
regulation
to
determine
what's
the
best
manner
to
convey
that.
But
I
don't
think
that
the
ccp
has
any
intention
of
allowing
those
warnings
to
be
given
verbally.
A
And
madam
sheriff,
I
made
through
you
to
senator
kikefor
matt
walker
for
the
record.
I
would
point
you
to
the
presentation
briefly
on
both
of
those
excellent
questions
in
the
manner
in
which
something
is
prescribed
to
be
on
the
label
versus
on
the
sticker
attached
to
it.
A
You
can
see
that
on
the
smaller
products,
what
results
is,
is
less
information
being
meaningfully
conveyed
to
the
consumer
and
so
we're
just
hoping
to
clear
the
statutory
path,
so
the
ccb
can
comprehensively
take
up
these
regulations
and
ensure
that
not
not
only
is
the
information
made
available,
but
it's
made
available
in
the
in
the
best
way
to
actually
absorb
the
information
for
the
consumer
and
compare
among
products.
B
So,
to
follow
up
with
that
I'll
just
take
the
liberty
of
jumping
in
here
so
particularly
to
mr
climus.
B
So
the
intent
is
still
that
it
would
not
be
up
to
the
dispensary
themselves
to
decide
how
they
want
to
convey
the
information,
but
rather
that
we're
taking
it
out
of
statute
and
putting
it
into
the
regulatory
framework.
So
your
body
would
still
be
doing
that
regulatory
process
would
be
giving
them
detailed
instructions
and
it
would
be
a
little
bit
more
a
little
bit
more
flexible
to
change,
because
it's
in
the
regulatory
framework
instead
of
the
statutory
framework
set.
The
idea
here
jared.
B
Okay,
and
would
you
just
say
for
the
record
that
you
don't
do
not
intend
to
loosen
the
labeling
or
the
standards
in
terms
of
the
information
that
consumers
need
to
stay
safe,
yeah.
F
B
B
G
G
G
B
G
G
Callers,
it
appears
that
one
of
you
have
left
or
left
your
place
in
the
queue.
So
if
that
was
an
accident-
and
you
do
want
to
testify
in
opposition
to
the
bill,
please
press
star,
9.
G
G
A
A
B
G
G
B
C
Thank
you,
chair
roddy.
I
think
that,
in
closing,
this
is
not
something
that's
new.
It
was
something
that
was
already
happening
in
covet.
Curbside
picked
up.
It
was
hugely
successful
for
the
business
owners
and
for
the
patrons
that
came
to
pick
up
product
at
the
stores,
and
so
what
this
bill
is
doing
is
just
putting
this
into
law
that
we
can
continue
doing
what
we
were
already
doing.
That
was
really
successful.
C
Additionally,
the
labeling.
It
is
something
that
keeps
in
mind
how
we
want
to
make
sure
that
these
products,
when
they
go
into
people's
homes,
they're,
safe
and
people,
know
what's
in
them,
and
they
and
things
that
look
like
candy
are
marked,
so
they
don't
look
like
candy
and
keep
going
to
the
reach
of
children.
Those
kinds
of
things
are
really
important,
and
I
applaud
my
partners
in
this
bill
for
bringing
this
forward.
C
I
think
these
are
all
important
components
of
the
industry
and
as
we
move
forward,
I
hope
that
we
can
get
your
support
on
this
important
bill.
Thank
you.
So
much.
B
All
right
seeing
none
I'm
going
to
go
ahead
and
close
the
hearing
on
sb
168
and
I'm
going
to
compliment
vice
chair
spearman
on
her
timing,
because
that
was
perfection.
So
we
are
going
to
go
ahead
and
move
into
a
work
session
and
then
we'll
resume
bill
hearings.
So,
ms
kamlossi,
if
you
could
take
us
through
the
work
session,
thank
you.
H
Madam
chairman,
come
lossy
with
the
division
of
the
lcb
for
the
record.
We
have
two
bills
on
the
work
session
today.
The
first
is
senate
bill
49
and
the
second
bill
is
senate
bill
156
senate
bill
49
was
heard
in
this
committee
on
february
4..
The
bill
makes
various
changes
related
to
cannabis.
It
removes
authorization
for
the
cannabis
compliance
board
to
take
the
testimony
of
a
witness
by
deposition
and
hearings
before
the
board.
H
The
bill
sponsor
proposed
three
amendments.
During
the
bill
hearing,
it
is
attached
to
the
work
session
document
and
essentially
the
amendments
authorize
the
chair
of
the
ccb
to
approve,
at
the
request
of
the
respondent
or
a
petitioner,
or
on
agreement
by
both
parties,
one
or
more
extensions
to
the
45-day
requirement
within
which
a
disciplinary
hearing
must
be
held.
It
authorizes
the
executive
director
to
serve
a
complaint
and
it
authorizes
the
board
to
employ
the
services
of
people
who
it
considers
necessary
to
assist
with
the
hearing
with
hearing
disciplinarian
proceedings.
B
Thank
you
so
members
of
the
committee,
we
did
have
some
testimony
in
this
in
this
bill.
Hearing
that
came
from
individuals
who
were
concerned
about
the
ability
to
do
background
checks
in
publicly
traded
companies
and
the
stakeholders
who
were
interested
in
that
issue
did
meet
with
the
chemist's
compliance
board
representatives
multiple
times
in
order
to
see
if
they
could
work
something
out,
I
don't
think
we
came
to
a
level
of
100
agreement,
but
what
we
did
get
to
is
that
conversation
with
mr
climas
about
that.
B
F
Thank
you,
chair
type
of
climbers
for
the
record,
and
that
account
is,
is
correct.
We
do
have
a
number
of
publicly
traded
companies
in
the
industry
nccr
five,
that's
our
regulation
that
deals
with
publicly
traded
companies.
It
deals
with
background
checks
and
it
also
deals
with
waivers
waivers
of
ownership.
Under
five
percent
allows
for
publicly
treated
companies
that
have
a
number
of
shareholders
to
continue
to
do
day,
trading
and
shareholders
to
to
purchase,
shares
and
sell
shares
without
having
to
go
through
the
complete
registration
process
that
any
owner
over
five
percent
has
to
do.
F
Certainly,
there
has
been
input
from
publicly
traded
companies
about
thresholds,
five
percent
ten
percent.
There
are
some
some
suggestions
on
on
how
to
streamline
that
process
as
the
ccb.
We
totally
understand
those
those
concerns
and
and
we've
always
had
an
open
door
policy
on
that
at
the
last
board
meeting,
it's
on
record
that
we
will
be
holding
a
workshop.
We
do
both
informal
workshops
and
formal
workshops
whenever
we
make
regulatory
changes,
so
it'll
be
plenty
of
opportunity
to
talk
through
nccr5.
F
F
We
look
forward
to
continuing
to
refine
all
of
our
regulations
as
they
are
very
much
living
documents,
and
so
we
did
have
conversations
chair.
We
did
talk
about
those
opportunities
for
input
and
I
certainly
believe
that
a
lot
of
those
suggestions
and
concerns
can
be
addressed
in
a
public
setting
at
a
workshop
in
front
of
the
board.
B
And
so
thank
you,
mr
climate.
Just
a
promise
just
to
put
a
finer
point
on
it.
Would
you
say
that
acknowledge
that
there
could
be
some
better
processes
when
it
comes
to
public
trading,
publicly
traded
companies
and
that
that's
the
intent
of
opening
up
those
workshops
on
this
part
of
the
this
part
of
your
regs.
F
Chair
this
is
tyler
clements
for
the
record,
that's
correct,
with
publicly
traded
companies
and
different
ownership
structures,
there's
so
many
different
scenarios
and
situations
that
that
go
along
with
ownership
and
transfer
of
ownership
and
stock
shares
and
selling
stocks.
And
so
yes,
we
certainly
anticipate
getting
into
nccr
five
and
making
changes
that
account
for
all
those
different
situations
that
that
come
up
and
and
certainly
help
to
streamline
the
process
for
both
the
regulators
and
the
members
of
the
industry.
B
Okay,
so
members
we
wanted
to
get
that
on
the
record,
of
course,
we're
in
work
session,
not
necessarily
a
relitigation
of
the
entire
bill.
So
we'll
ask
we'll
allow
for
some
clarifying
questions.
Make
sure
you
understand
what
you're
voting
on
based
on
the
results
of
those
conversations
so
senator
hardy.
E
Thank
you,
madam
chair.
I'm
looking
at
the
amendment.
The
third
amendment
where
it
says,
provides
for
the
board
to
employ
additional
services
to
assist
the
disciplinary
proceedings
of
the
ccb
number
one.
Is
it
subject
to
the
open
meeting
law?
Do
we
know
the
qualifications
of
those
people
who
are
employed
to
help
or
are
preclusions
of
who's,
not
supposed
to
be
able
to
help
meaning
some
for
lack
of
a
better
word
nefarious
person
who
has
been
convicted
of
illegal
marijuana
or
some
other
preclusion
for
something
that
we
don't
want?
E
A
virtual
marijuana
mob,
as
it
were,
being
the
people
who
are
going
to
quote
help
unquote,
get
this
over
a
finish
line.
F
Yes,
thank
you
senator
for
the
question
tyler
clements
for
the
record.
It's
it's
actually
at
the
end
of
the
day,
this
allows
us
to
hire
an
administrative
law
judge
senator
so
very
similar
to
other
state
agencies.
The
ccp
does
not
have
its
own
administrative
law
judge.
In
fact,
we've
been
borrowing
taxation's
administrative
law
judge,
which,
thanks
to
taxation,
we've
that's
allowed
us
to
process
our
disciplinary
hearings,
but
that's
what
this
allows
us
to
do,
and
that
is
the
only
services
that
we
would
employ
through
through
subsection
10.
Here.
E
This
will
not
include
an
increased
fee
or
on
the
people
who
are
paying.
F
For
it,
thank
you
senator
and
the
administrative
law
judge
is
in
our
approved
budget
from
the
from
the
governor's
approved
budget,
so
those
funds
are
are
currently
in
there,
as
it's
approved
now,.
I
I
will
make
my
comment
on
the
motion
once.
B
B
Got
a
men
do
pass
from
senator
hardy.
I
see
a
second
from
senator
spearman
opening
up
for
discussion.
Senator
harris.
I
I
I
E
E
M
B
Right
motion
passes:
let's
see
senator
key
keffer.
Would
you
be
willing
to
do
the
force
statement
on
this
one.
H
H
Rural
hospital
partners
proposed
authorizing
a
rural
hospital
to
obtain
an
endorsement
as
a
crisis
stabilization
center,
even
if
it's
not
accredited
by
certain
hospital
accrediting
entities
and
that
would
allow
rural
hospitals
to
get
an
endorsement
as
a
crisis.
Stabilization
center
and
the
second
amendment
was
proposed
by
marian
walker
representing
carson
tahoe
health,
and
this
amendment
expands.
H
The
accrediting
agencies
listed
in
section
1,
subsection
5b
to
include
the
center
for
improvement
in
healthcare,
quality
e
and
vgl
healthcare,
healthcare
facilities,
accreditation
program,
which
is
merged
with
accreditation,
commission
for
healthcare
and
any
of
these
or
their
successor
organizations.
H
And
I
believe
we
have
representatives
of
both
amendments
as
well
as
dpvh
on
the
video
conference.
If
there
are
questions.
B
Thank
you,
mr
mossy,
so
on
this
one,
the
intent
of
the
bill
was
to
extend,
expand
this
from
psychiatric
hospitals
to
all
hospitals,
and
we
needed
to
do
some
work
on
the
details
of
the
wording
to
make
sure
that
we
were
really
getting
to
all
hospitals.
As
ms
kumasi
mentioned,
we
do
have
representatives
from
the
amendment.
If
you
have
any
clarifying
questions.
B
E
B
So
our
understanding
is
from
the
department
of
health
and
human
services
that
we
do
need
both
to
capture
all
of
the
different
types
of
hospitals.
B
I
think
we
have
somebody
here
from
dhhs
if
you'd
like
them
to
explain.
No
okay
appreciate
the
concession
to
move
the
meeting
forward,
so
we
have
a
motion
and
a
second
any
other
discussion.
E
E
B
Yes
and
I'll
go
ahead
and
take
the
floor
statement
this
one.
Okay,
that's
going
to
close
out
our
work
session.
If
you
are
on
the
zoom
meeting
in
order
to
support
either
the
work
session
on
either
sb49
or
sb156,
you
are
free
to
drop
off.
There
won't
be
any
other
action
on
those
two
bills
today.
The
same
would
be
through
be
true
for
sb
168.
That
hearing
is
closed
and
there
won't
be
any
other
action
on
that
today.
N
Okay,
hey
good
afternoon
committee
on
health
and
human
services
and
chair
ready
and
vice
chair
spearman,
so
I
am
here
to
present
sb
175,
which
is
a
bill
about
lupus
and
before
I
get
started,
I
wanted
to
show
a
quick
video
about
what
is
lupus
before
I
get
into
why
I
brought
this
bill
and
introduce
my
co-presenters.
N
O
O
O
Women,
it
can
have
varied
presentations
since
sle
can
attack
any
part
of
the
body
everybody
can
present
in
a
different
pattern.
What
they
go
through
depends
on
what
kind
of
lupus
they
have.
Some
patients
will
have
a
much
more
severe
disease
where
they
develop
kidney,
lung
or
brain
involvement.
Some
patients
will
have
mild
disease,
mostly
with
rashes
and
joints.
O
Occasionally
you
can
tell
what
kind
of
lupus
they
will
have
based
on
their
serological
profiles,
and
some
auto
antibodies
may
signify
a
higher
risk
of
some
subtypes
of
lupus,
but
in
general
it
is
a
chronic
disease
that
can
flare
from
time
to
time.
So
patients
can
do
very
well
between
these
flares
in
general,
they
may
have
an
average
of
one
or
two
flares
a
year
and
during
those
flares
again
depends
what
the
disease
is
attacking,
but
they
can
be
disabled
in
this
days
of
work,
it
may
affect
their
family
life.
O
N
Okay,
thank
you
for
that.
Chair
lupus
is
one
of
these
invisible
diseases
that
I
felt
like
I
needed
to
show
that
video.
So
we
could
get
on
the
same
page
about
what
it
is.
It's
not
cancer.
It
is
an
autoimmune
disease
that
affects
the
body
very
differently.
N
The
lupus
foundation
of
america
estimates
that
roughly
1.5
million
americans
and
at
least
5
million
people
worldwide
have
a
form
of
lupus.
I
stated
in
the
video
it
mostly
strikes
women
of
child
bearing
age.
However,
men,
children
and
teenagers
develop
lupus
90
of
the
people
living
with
lupus
happen
to
be
women,
and
most
of
them
are
between
the
ages
of
15
and
44..
N
People
with
lupus
can
experience
significant
symptoms
such
as
extreme
fatigue,
hair
loss,
cognitive
issues,
physical
impairment
that
will
affect
every
part
of
their
life.
Many
will
suffer
from
cardiovascular
disease,
strokes,
disfiguring
rashes
and
painful
joints.
Our
best,
the
best
estimates
that
research
puts
out
there
is
that
there
is
an
incidence.
N
Sixteen
thousand
new
cases
a
year
for
lupus.
There
are
four
types
of
lupus:
there
is
systemic
lupus,
which
is
a
majority
of
the
cases.
Seventy
percent
it
affects
the
heart,
lung,
kidney
brain,
then
there's
a
lupus
that
ex
affects
the
skin
there's
drug
induced
lupus
that
can
occur
if
you
have
a
certain
kind
of
medication
and
then
there's
neonatal
lupus,
which
is
a
very
rare
condition
that
affects
the
fetus.
N
I
wanted
to
bring
this
bill
because
not
all
the
states
have
passed
legislation
and
it's
been
sporadic
at
best.
Congress
has
but
starting
in
2004
the
cdc
founded
a
network
of
the
national
lupus
registry
in
selected
counties,
california,
georgia,
michigan
and
new
york,
and
at
selected
indian
health
service
regions,
each
site
focused
on
one
to
two
specific
races
or
ethnic
groups.
N
These
cdc
lupus
registries
are
unique
and
groundbreaking
for
the
specific
purpose
of
their
current
research.
They
follow
the
treatment,
history,
healthcare
access
and
natural
history
of
the
severity,
the
morbidity
and
the
mortality
rate
of
lupus
patients.
My
bill,
sp
175,
is
going
to
start
tracking.
N
N
Around
lupus
funding
has
been
that
congress
actually
in
2020,
passed
8.5
million
dollars
that
went
to
fund
the
lupus
registry,
indicating
that
there
was
a
clear
interest
to
recognize
the
importance
of
what
is
going
on
within
the
space
black
women
with
lupus
were
diagnosed
at
a
younger
age
and
have
a
higher
risk
of
developing
lupus
kidney
disease
and
end-of-stage
kidney
disease
as
compared
to
white
women
in
new
york.
50
of
the
people
of
color
with
lupus
develop
lupus
kidney
disease
compared
to
that
of
25
percent
of
whites.
N
What
are
the
variants
that
are
associated
with
lupus
and
we
need
to
track
it
and
we
need
to
become
a
part
of
the
access
to
care
for
these
individuals
who
are
becoming
invisible
within
our
society
will
have
been
invisible
within
our
society.
N
So
I
wanted
to
give
you
guys
that
breakdown
to
just
kind
of
I
guess,
build
a
framework
of
what
this
is.
Why
lupus
is
important,
because
it
is
a
disease
that
is
affecting
as
affecting
thousands
of
people.
The
data-
that's
in
the
record
on
the
emergency
visits,
is
not
a
clear
indication
of
who
is
going
just
for
simple
position
visits.
N
So
before
I
get
into
the
bill,
I
want
to
introduce
miss
calvina
williams.
Is
it
calvina
yeah?
She
is
the
president
of
the
nevada
chapter
of
the
lupus
organization,
miss
calvina,
hi,.
C
Thank
you,
senator
neal.
How
are
you
and
how's
everyone
on
there
on?
Well,
let
me
say:
let
me
introduce
myself.
I
am
calvinia
williams,
founder
and
president
of
lupus
of
nevada.
The
mission
of
lupus
of
nevada
is
educational
awareness
and
advocacy
for
the
last
17
years.
Our
programs
have
consisted
of
nutritional
workshops,
monthly
support
group
meetings,
coping
strategies,
educational
conferences,
community
outreach
and
resources
to
assist
our
lupus
communities.
C
Individuals
diagnosed
with
lupus
have
many
obstacles.
Some
of
our
families
and
friends
in
the
world
around
us
choose
to
blame
us
for
pretending
to
have
lupus
or
its
symptoms.
Unfortunately,
they
are
not
aware
of
the
impact
in
this
of
this
devastating
disease,
so
they
choose
to
look
the
other
way
or
stay
out
of
sight
out
of
mind.
My
story
is
this:
I
am
a
lupus
survivor
of
20
years.
C
Years
ago,
my
dad
and
my
son
noticed
it
was
hard
for
me
to
understand
words,
so
my
son,
who
was
10,
would
go
with
me
to
help
me
understand
what
the
doctor
was
saying.
I
could
hear
my
son
saying
is
my
mother?
Not
why
is
my
mother,
not
communicating
the
doctor
responded.
She'll,
be
all
right.
That's
just
lupus
it'll
wear
off
side
note
this
is
this
is
associated
with
a
cognitive
dysfunction
with
people
who
have
lupus
it
is
called
in
short
brain
fog.
C
A
few
weeks
later,
a
new
doctor
was
filling
in
for
my
regular
doctor,
while
he
was
out
of
town
while
in
the
room
I
started
mumbling
and
sliding
off
the
chair.
He
called
his
nurse
and
he
said
this
appears
she's
having
a
stroke.
I
was
immediately
taken
to
the
hospital
I
laid
on
a
gurney
in
the
er
hallway
two
doctors
approached
and
read
the
notes
from
the
triage.
C
They
were
preparing
me
for
a
cut.
It's
a
clot
bursting
drug
to
break
up
blood
clots
with
stroke
victims.
The
head
doctor
in
er
appeared
happened
to
be
scheduled
on
staff
that
evening,
and
he
heard
there
was
a
possible
stroke,
patient
with
lupus
and
other
life-threatening
health
problems
associated
with
lupus
the
head.
Er
doctor
asked
the
other
two
dogs.
What
are
you
doing?
Don't
inject
anything
in
this
patient
she
has
lupus.
He
explained.
Lucas
is
the
great
imitator.
C
I
don't
believe
she
has
had
a
stroke.
Let's
run
some
tests
to
determine
the
problem.
Wow
I
was
misdiagnosed.
Can
you
imagine
if
that
head
doctor
in
er
had
not
been
there?
What
would
have
happened
to
me
the
outcome?
I
believe
that
er
doctor
saved
my
life.
Let
me
leave
you
with
a
thought
how
many
more
lupus
lives
have
been
misdiagnosed
and
didn't
make
it.
For
those
reasons,
please
pass
sb
175.
B
N
Thank
you.
So
I
had
two
other
presenters,
mrs
bailey.
B
P
P
My
name,
my
name,
is
chaplain
wanda,
bailey
johnson
and
I'm
the
director
of
outreach
for
lupus
of
nevada.
First
of
all,
I
had
a
problem
with
my
pain
center
doctor.
They
had
a
procedure
that
they
did
on
my
lower
back
and
that
became
infected.
Okay.
What
I
was
told
was
that
I
had
something
called.
P
I'm
going
to
just
spell
the
word,
because
it's
a
medical
word
and
I
cannot
pronounce
it
so.
Our
first
word
is
p
s
e.
U
d,
o
m
o
n!
A
s!
Second
word
is
a
e
r.
U
g!
I
n
o
s
a
medical
term,
but
now
what
I
did.
This
is
the
problem
that
they
told
me
that
I
had
and
it
came
from
the
use
of
a
unclean
tool
or
equipment
in
the
hospital,
and
it
says
also
when
I
did
more
research
on
it.
P
It
says
for
my
from
my
research
that
I
found
this
was
a
way.
The
way
that
I
got
it
was
through
unclean
hospital
or
person
or
persons
going
from
hospital
place
to
place,
and
I
was
sent
to
at
least
five
different
hospitals,
different
places
myself,
doctor
offices
and
I've
been
getting.
I
was
supposed
to
be
getting
a
neural
stimulator.
P
This
is
for
my
back
to
stimulate
the
pain.
Okay.
Now
it
was
supposed
to
help
me
with
my
pain,
but
it
was
burning.
It
was
burning
inside
my
back
so
or
something
like
that.
So
it
took
them
about
three
months
to
finally
change
my
well.
They
were
changing
my
bandage
every
day
for
three
months
and
then
after
changing
my
bandage
every
day,
it
took
wait
a
minute,
sorry
about
that.
It
was
to
click
clean,
clear
it
up.
P
This
is
one
of
the
main
reasons
this
sb
175
bill
is
needed
so
much
to
help
us
not
just
become
you
know
just
be
used
as
guinea
pigs
because
it
felt
like
that's
what
I
was
being
used
as
and
then
also
as
we
went
on
the
the
seizure
getting
the
right
procedure.
So
we
can
always
get
our
right
procedures.
P
What
we
need
done,
so
they
can
be
accountable
for
it
and
it's
a
things
that
we
do
for
people
with
lupus
and
having
the
doctor
to
be
accountable
for
what
they
do
and
what
they
give
to
lupus
patients,
and
not
just
tell
us.
Oh
it's
just
a
lupus
flare-up
about
the
year.
About
a
year
ago
I
was
in
the
hospital
and
one
of
the
main
medications
they
gave
me
was
a
one
thousand
milligrams
of
prednisone
for
about
three
to
four
days
and
they
dropped
it
down
to
eight
eighty
milligrams,
and
then
they
sent
me
home.
P
P
P
B
Q
Q
Right
so
my
name
is
shan
clement,
zlojera
s,
h,
a
e,
a
n
n
c
l,
e
n
e
n
c
s,
o
j
e
d,
a
I'm,
an
executive
board,
member
of
the
nsbp
and
I'm
27
years
old.
Q
I
was
diagnosed
with
lupus
when
I
was
nine
and
I'm
on
dialysis,
while
I'm
on
my
way
to
get
on
the
transplant
list,
I'm
in
full
support
of
sb
175,
because
not
only
do
we
need
more
research,
information
and
statistics
to
help
find
better
treatments
and
more
resources.
We
also
need
to
hold
our
doctors
accountable
being
diagnosed.
So
young
was
a
very
lucky
thing.
The
the
pediatric
world
is
way
more
attentive
than
the
adult
medical
world.
Because
of
that
I
knew
what
a
good
doctor
or
nurse
was
so
when
I
became
an
adult.
Q
Q
I
kept
asking
this
nurse
when
someone
was
going
to
take
my
vitals
in
an
ekg.
She
kept
telling
me
soon.
Finally,
after
sitting
there
for
hours
more
with
my
ex,
I
demanded
to
know
why
I
still
hadn't
had
my
vitals
taken
and
still
no
ekg.
I
had
all
symptoms
of
a
possible
heart
attack
and
not
to
mention
my
family
had
a
pretty
severe
heart
heart
disease
history,
young.
I
knew
not
to
take
these
symptoms
lightly.
Q
This
nurse
sat
down
next
to
me
and
started
rubbing
my
left
arm
that
I
had
been
holding
and
told
her
was
in
severe
pain.
She
started
to
explain
to
me
how
the
demographics
worked,
that
patients
that
are
older
and
more
predisposed
to
deadly
issues
would
go
first
and
that
age
and
other
things
were
factors
to
my
long
wait.
I
then
explained
to
her
that
I
fully
understood
the
demographic
than
that
any
patient
of
any
age
coming
in
with
chest.
Q
Pains
of
any
sort
and
head
injuries
take
precedence
after
fatal
bleeding
wounds
and
that,
if
she
continued
to
say
otherwise,
she
would
be
facing,
and
I'm
talking
facing
on
tala
violations
and
for
this
hospital.
Almost
immediately
after
saying
this
did
I
finally
get
my
vitals
and
ekg
taken.
I
eventually
found
out.
It
was
pericarditis
which
is
inflammation
of
the
lining
of
your
heart,
a
very
common
and
luckily
not
deadly
symptom
of
lupus,
but
it
sure
hurts
like
you're
having
a
heart
attack.
Q
Lastly,
you
need
to
know
about
the
severity
of
lupus
and
how
it's
different
for
every
patient.
You
can
be
like
my
friend
sam
who
has
painful
but
less
deadly
symptoms.
You
can
have
the
severity
of
these
of
these
two
women
speaking
here
with
me
today.
You
have
me
a
27
year
old
on
dialysis,
who
almost
died
three
different
times
in
her
life,
and
then
you
have
my
mom
she's,
not
only.
Q
She
was
not
only
misdiagnosed
as
a
paranoid,
schizophrenic
and
actually
had
lupus
cerebritis,
her
whole
life,
but
she
also
died
not
long
after
being
diagnosed,
while
on
the
dialysis
machine
she
had
died
from
heart
failure,
if
not
for
a
doctor
in
the
psychiatric
hospital
she
was
in.
It
didn't
recognize
if
a
doctor
in
the
hospital
she
was
in
didn't
recognize
her
as
someone
that
she
had
grew
and
grown
up
with
and
knew
about
me.
None
of
that,
none
of
us
would
have
even
known
that
she
had
lupus.
Q
Nor
would
we
have
known
that
she
could
have
possibly
what
could
have
possibly
been
causing
my
mother's
psycho
psychosis,
her
whole
life
and
never
able
to
raise
her
kids
that
she
desperately
wanted
to
do
since
before
I
was
born
as
her
first
child.
Maybe
if
we
had
more
information
regarding
lupus
patients
in
specific
states
like
here
in
nevada,
maybe
doctors
would
have
caught
that
sooner.
Maybe
I
would
have
had
a
mom
as
my
mom,
instead
of
vague
memories,
of
her
being
unstable
and
dangerous
and
scared
of
the
world.
Q
N
Thank
you,
chair,
ready
for
allowing
those
three
presenters
there's
a
there's,
a
reason
why
I
asked
the
three
women
to
come
on
and
present
three
different
stories
about
how
they've
been
affected,
because
that
gets
us
into
sb
175..
N
If
you
get
into,
and
I'm
gonna
just
jump
right
in
in
section
five,
and
the
reason
why
this
bill
is
necessary
is
because
we
need
to
collect
data
around
the
women.
If
you
go
to
section
five
of
the
bill
being
able
to
establish
a
system
where,
in
section
528
where
we
can
conduct
comprehensive,
epidemiolic,
epidemiologic
surveys
of
lupus
and
its
variants
and
evaluate
the
appropriateness
and
the
measures
for
treatment
of
lupus
and
its
variants,
that
will
help
tell
the
story
number
one
within
the
health
care
setting
of
what
is
going
on.
N
N
If
a
patient
is
diagnosed
with
lupus
and
they
die,
we
need
to
know
what
happened
and
how
they
died.
When
we
listened
to
the
story
by
miss
clement,
her
mother,
being
misdiagnosed,
knowing
that
there
was
a
cognitive
there's,
a
cognitive
variant
to
lupus
would
have
helped
her
get
the
treatment
early
on
what
happened
with
miss
calvino,
calvinia
williams,
them
misdiagnosing
a
stroke
when
she
truly
had
a
symptom
of
lupus
is
something
that
probably
could
have
happened
to
thousands
of
women.
N
But
we
don't
know
because
there
could
have
been
a
doctor
who
said
she
was
having
a
stroke,
giving
them
some
medication
for
a
stroke
and
then
effectively
killed
a
patient.
So
I
thought
this
bill
was
important
when
they
approached
me
about
doing
this
legislation.
I
said
sure,
and
so
the
bill
mimics
a
bill
that
I
had
in
prior
session,
around
sickle
cell,
but
basically
nevada
needs
to
get
into
the
game
of
being
a
part
of
the
registry
and
collecting
data.
N
We
fall
in
line
with
the
national
recommendations
from
2015
from
the
division
of
health
and
human
services,
and
so
this
bill
doesn't
fall
out
of
the
general
guidelines
of
what
is
being
expected
to
put
the
first
step
forward
to
start
collecting
the
data
around
patients
and
have
it
housed
and
collected
and
recorded
so
that
we
can
understand
what's
going
on
with
these
patients.
So
pretty
much,
that's
in
a
nutshell.
N
What
the
bill
does
the
rest
of
the
bill
basically
just
explains
the
analysis
and
the
confidentiality
provisions
of
these
kinds
of
reports
that
will
be
collected,
and
so
I
will
open
myself
up
for
questions.
E
Thank
you,
madam
chair.
I
notice
that
there's
might
be
a
more
appropriate
question
in
a
different
finance
committee,
but
there's
no
fiscal
note
attached
to
it
do
recall
when
that
we
had
issues
with
the
state
cancer
registry
right
when
we
were
trying
to
assess
fees
on
the
providers
to
report
data
back
to
the
cancer
registry,
it
became
a
pretty
significant
financial
burden
on
small
doctors,
offices
and
things
like
that.
It
actually
impeded
some
of
the
collection
of
data
and
information
so
trying
to
figure
out
in
sections.
E
I
think
seven
and
eight,
which
of
where,
along
the
diagnosis
and
treatment
spectrum,
are
people
going
to
be
assessed.
The
fees
for
collection
and
who's
going
to
be
turning
it
who's,
going
to
be
required
to
turn
it
over.
N
So
majority
of
the
patients,
from
my
understanding,
see
rheumatologists
in
the
state,
and
so
I
believe,
miss
when
I
spoke
to
miss
williams
and
the
women
miss
bailey
and
miss
clements.
There
are
roughly
about
13
to
14
rheumatologists
that
focus
on
the
autoimmune
disease
portion
of
this.
N
The
other
entities
that
would
be
affected
would
be
potentially
the
the
hospitals
right,
the
emergency
room
that
is
seeing
the
patient
and
then
transmitting
that
information
back
if
they
have
a
primary
care
physician,
then
that
primary
care
physician
would
also
be
looped
into
this.
N
The
provision
in
the
bill
is
similar
to
a
provision
that
I've
had
in
a
prior
bill
on
sickle
cell,
where
that
fee
was
assessed-
and
I
have
I
do
recall
those
conversations
and
on
in
ways
on
the
assembly
side,
but
this
has
been
the
mechanism
in
order
to
get
this
information
reported
is
to
place
the
place.
The
onus
on
the
actual,
treating
the.
E
Individual
yeah,
I
think
I
think
he
hit
on
a
point
that
I
was
going
to
get
to
there's
a.
We
have
a
massive
shortage
of
rheumatologists
in
the
state
I
think,
and
if
so,
the
financial
onus
of
of
the
state's
work
in
this
space
being
placed
on
a
really
small
number
of
providers.
E
E
You
know
a
single
patient's
files
from
multiple
providers
from
a
hospital
from
a
rheumatologist
from
a
primary
care
doc
and
then
creating
an
abstract
for
each
one
of
those
patients.
It
seems
like
an
awful
lot
of
work
to
me.
I
worry
about
what
those
fees
might
have
to
be
set
at
to
cover
the
cost
of
doing
something
so.
B
Senator
keith,
we
have
lindsay
consignor
from
the
department
of
public
and
behavioral
health.
I
will
say
that
the
fiscal
note
has
not
dropped
yet
the
deadline
hasn't
passed,
but
they
have
done
some
work
on
it.
So
we
will
ask
this
consenter
to
ask
answer
your
questions.
A
Yes,
thank
you
so
lindsay
kinzinger
manager
of
office
of
public
health
investigations
and
epidemiology
for
the
representatives.
A
Better,
okay,
thank
you.
So
we
believe
it
would
cost
one
full-time
fte
to
do
this
work.
So
one
full-time
person
within
the
opi
office
to
manage
this
registry
work
on
the
fee
structure,
abstract
the
data
and
collect
the
data,
put
it
into
our
system
and
then
develop
the
reporting.
E
A
So
we
think
it
would
cost
us
about
112
000
a
year
for
this
person
and
the
abstraction
and
the
reporting.
I
do
not
know
how
many
rheumatologists
there
are
across
the
state,
and
I
don't
know
how
that
would
break
down.
I
am
not
fully
aware
of
at
what
levels
in
each
medical
provider's
office
the
state
is
collected,
so
this
person
would
also
be
charged
with
that
feat
of
you
know
doing
the
fee
structure
and
who
would
pay
what.
E
I
appreciate
that
miss
kinser
and
I
I
certainly
appreciated
the
need
for
collecting
this
information
and
using
it
appropriately.
I
worry
that
maybe
this
structure
is
gonna,
isn't
gonna
get
us
exactly
what
we're
looking
for.
I
appreciate
it.
Thank
you.
N
Thank
you
for
the
question,
because
I
understand
that
there
is
going
to
be
a
cost
associated
with
this
I
mean
I
talked
to
the
division,
so
we
could
work
out
having
the
one
fte
it
this
bill,
mimics
a
another
bill
that
I
had
on
sickle
cell,
and
so
sometimes
you
know
you
have
to
make
the
first
step,
because
there
are
individuals
who
are
being
faced
with
serious
consequences
of
having
an
invisible
disease
and
when
I've
looked
at
other
states
who
have
number
one
passed
legislation,
it's
been
far
few
between
california
attempted
to
pass
two
legislation
twice
it
hasn't
made
it
out.
N
Georgia
has
managed
to
get
a
commission
on
lupus
illinois.
Is
the
only
state
that
I've
seen
that
actually
passed
an
actual
bill
around
lupus
for
individuals?
Nevada
is
one
of
those
states
where
I
feel
like.
If
a
hundred
and
twelve
thousand
dollars
will
save
ten
thousand
women
lives
from
being
misdiagnosed
and
having
enough
data
for
us
to
get
involved
in
the
national
space,
get
involved
in
the
space
of
the
funding
number
one,
because
the
federal
government
did
they
did
the
eight
the
8.5
million.
N
10
million
went
to
lupus
research,
2
million
went
to
office
of
minority
health
and
9.5
million
went
to
the
national
lupus
patient
registry.
So
there
is
an
opportunity
number
one.
If
we
pass
this
legislation
to
number
one
engage
in
grants,
engage
in
connecting
ourselves
from
state
to
federal
so
that
we
can
access
funding.
N
We
currently
don't
even
have
a
framework
to
even
put
our
baby
toe
into
the
lupus
registry
nationally,
because
we
don't
have
legislation
that
is
even
asking
for
surveillance
data
around
these
patients,
and
so
I
understand
the
costs.
But
I
also
understand
that,
even
if
this
bill
was
able
to
get
a
one,
a
one
shot
chance
of
getting
a
hundred
and
twelve
thousand
dollars,
we
could
potentially
walk
into
an
environment
where
we
would
leverage
and
be
able
to
leverage
ourselves
for
federal
dollars
that
are
in
the
space.
E
M
Thank
you,
madam
chair,
so
senator
neil.
This
is
a
disease
that
mostly
women.
M
So,
do
you
happen
to
know
what
percentage
of
them
are
living
in
bipolar
communities.
N
Yes,
in
nevada,
based
on
the
data-
and
if
you
I
mean
I
can
do
national
but
the
based
on
the
hospitalization
data
that
we
have,
which
is
in
your
exhibits,
black
women
represented
29
of
the
hospitalizations
asia
was
.3.
M
So
so
here's,
I
guess
this
is
maybe
maybe
a
statement,
part
question,
but
over
the
last
year,
or
so
I
think
the
last
number
that
I
saw
was
300.
000
nevadans
had
been
impacted
by
covet
and
but
more
than
5000.
M
N
I
don't
know
if
they're
tracking
the
cold,
that's
the
data
that
I'm
trying
to
get
what
I,
what
I
do
have
are
the
deaths,
so
there
were
roughly
133
lupus
related
deaths
between
2017
and
2020,
and
that
was
a
rate
of
1.1
per
100
000
in
nevada
of
approximately
83
percent
of
the
133
deaths
were
female,
44
were
white,
non-hispanic
and
23
percent
were
black
non-hispanic,
and
that
was
based
on
the
icd
icd-10
codes
that
the
division
was
able
to
pull.
For
me
in
the
summer.
M
Having
said
that,
the
question
is
what
funding
is
available
either
at
the
state
level
or
at
the
federal
level,
to
address
this
issue,
because
I
was
listening
to
listening
to
a
report.
The
other
day
I
think,
was
pbs
and
the
question
is
not:
if
we'll
have
another
pandemic,
it's
it's
when,
and
so.
If
we
don't
shore
up
those
communities
that
are
more
susceptible
to
these
sorts
of
things,
we'll
see
more
infections
and
we'll
see
more
deaths.
M
I
mean
it's
just
a
fact
of
life,
so
so
the
question
that
I
would
have-
and
maybe
you
can't
answer
this-
I
don't
know
charity.
Maybe
you
have
insight
on
this,
but
what
what
money
is
available
at
the
state
level?
M
What
has
come
in
for
covet
relief
and
covert
relief,
as
it
relates
to
medical,
either
diagnoses
or
prevention,
because
certainly
certainly
lupus,
is
one
of
those
things
that
mimicking
other
diseases
puts
you
at
a
greater
risk
of
not
just
a
misdiagnosis,
but,
as
we
heard
from,
is
it
shan,
as
we
heard
from
her?
It's
not
just
a
mis
diagnosis
diagnosis,
but
you
pay
for
it
with
your.
B
I
don't,
I
don't
believe
we
have
anybody
on
the
call
with
us
today
who
can
talk
about
all
of
the
funding
that
has
come
in
from
the
stimulus
money
to
address
covet,
specifically,
which
I
think
was
your
question
and
miss
clements
ohada.
So
we're
in
the
portion
of
the
hearing
where
the
senators
have
the
opportunity
to
ask
the
sponsor
questions,
and
if
the
sponsor
wants
to
refer
to
you
to
answer
a
question
she
can,
but
I
won't
be
able
to
call
on
you
otherwise.
B
So
I
appreciate
you
want
to
jump
into
the
conversation,
but
we've
sort
of
moved
back
past
that
part
of
the
process.
B
I
apologize,
but
certainly
senator
neil,
if
you
want
support
from
any
of
your
presenters
to
answer
a
question
that
is
at
your
discretion,
but
I
think
your
points
made
senator
spearman
that
you
know
the
covid
pandemic
has
shown
a
spotlight
on
the
disproportionate
impact
of
many
many
parts
of
our
health
care
system
on
people
of
color
and
that
the
ask
here
is
modest
to
be
able
to
address
a
specific
disease
that
disproportionately
affects
women
and
disproportionately
affects
people
of
color.
B
I
just
don't
think
I
can
get
you
an
answer
to
that
question
in
this
hearing.
So
with
that
members
of
the
community
do
we
have
any
additional.
B
Questions,
okay,
so
senator
neil,
just
just
getting
very
much
into
the
details
of
the
money
piece.
So
I
want
to
make
sure
so
what
I'm
seeing
is,
in
section
seven
sub
three,
that
the
state
board
of
health
child
by
regulation
adopt
a
schedule
of
fees
which
must
be
assessed
on
a
health
care
facility
for
each
case,
from
which
the
information
is
extracted
by
the
division.
B
Pursuant
to
subsection
two
and
I
so
I
think
the
question
is:
if,
if
there
were,
are
you
committed
to
a
fee
structure
with
in
under
which
the
facilities
pay
part
of
the
fair
part
of
the
weight?
If
you
will
to
be
able
to
collect
this
information,
or
if
there
was
a
general
fund
appropriation
available?
Is
that
okay,
I
mean,
as
the
sponsor
of
the
bill?
Do
you
care
how
it
gets
paid
for,
or
is
that
an
issue
for
you.
N
So,
thank
you
for
the
question.
Senator
ratty,
that's
not
an
issue,
but
to
amend
that
out
would
would
be
the
gamble
that
we're
gonna
find
the
hundred
and
twelve
thousand
going
through
senate
finance
to
fund
the
mechanism
if
it
was
removed.
N
So
I
don't
care
how
it
gets
funded.
I
think
that
if
we
do
this,
we
position
ourselves
for
the
federal
money
that
comes
available
in
the
future
to
help
the
research
and
develop
this
further
right.
Now
we
have
no
nothing,
no
part
of
the
of
the
of
the
landscape
of
lupus,
not
our
state
next
door
to
us,
not
the
states
around
us.
So
we
would
be
putting
a
step
forward
to
say
that,
at
least
in
the
western
side
of
the
united
states,
we
want
to
help
lupus
patients.
N
So
if
you
guys
find
it
in
your
great
wisdom
to
remove
that
fee
structure
and
think
that
you
can
finagle
112
000
I'd
be
open
to
it.
B
Well,
certainly,
as
the
sponsor
of
the
bill,
senator
neil
I'm
gonna,
I'm
gonna
leave
those
decisions
to
you.
You
understand
this
process,
probably
better
than
many
other
folks
in
the
building.
So
I
know
what
you
you
are
we'll
give
some
thought
to
that.
I
just
want
to
make
sure
we're
clear
on
it
and
it
seems
like
there's
another
fee
in
section
8
sub
2
sub
b.
B
That
is
about
anybody
who
wants
to
do
research
with
the
data,
but
we
don't
have
the
fiscal
note
yet-
and
this
is
a
policy
committee
so
really
today
we're
focusing
on
the
merits
of
the
policy
and
the
decision
before
the
committee
will
be
about
the
merits
of
the
policy
in
terms
of
collecting
this
information
either
way.
It'll
get
kicked
to
finance
if
it
comes
out
of
our
committee
for
the
finance
discussion.
E
So
I
I
have
challenges
in
the
logistics
of
it
and
you
know
if
I
start
looking
at
other
diseases
like
diabetes
or
you
know,
etc,
etc.
But
I
just
don't
feel
as
comfortable
as
I
would
like
at
this.
B
You're
before
you
go
to
your
nail,
is
there
a
question
in
there
senator
hardy
or
just
comment.
N
Okay-
and
I
appreciate
that
question-
thank
you
senator
hardy,
so
if
you
go
to
section
11,
this
is
this:
is
information
that
goes
from
the
care
facility
to
the
division.
Then,
in
section
11
you
have
the
shall
not
reveal
the
identity
of
the
patient,
physician
or
health
care
facility,
and
then
in
section
12
you
have
the
confidentiality
provisions
which
talks
about.
N
They
must
not
be
liable
in
civil
or
criminal
action
for
sharing
confidential
information
unless
it
was
done
bad
faith
or
for
malicious
purpose.
This
language
is
actually
very
similar
to
language
that
I
had
in
a
bill
in
2019
on
sickle
cell,
and
these
provisions
seem
to
pass
the
legislative
muster
to
make
sure
that
the
two-way
street
between
the
provider
and
the
division,
which
is
who
wants
this
information
or
who
I'm
designating
in
this
legislation
to
get
this
information
is
not
going
to
reveal
that
information.
This
is
not
going
to
become
public
information.
N
There
has
been
no
confidentiality
breaks
with
the
same
exact
language
that
you
see
in
section
11
and
section
12.
B
G
G
G
R
W-A-Y-N-E,
so
my
name
is
samantha
wayne
and
I
have
been
living
with
lupus
for
14
years.
I
am
in
support
of
sb-175.
R
I
can't
tell
you
how
many
times
I've
visited
a
doctor
for
a
cold
or
infection
and
they
are
hesitant
to
treat
me.
I'm
then
forced
to
turn
to
my
rheumatologist,
who
won't
treat
me
for
anything,
but
my
lupus,
you
can
see
how
a
chain
of
information
about
lupus
patients
can
make
a
huge
difference
in
the
care
of
a
lupus
patient
in
2017.
R
R
It
was
clear
to
me
that
it
seemed
like
I
was
just
another
patient
looking
for
pain
meds
rather
than
a
24
year
old
in
extreme
pain.
So
instead
I
went
home
with
temporary
pain
relief
and
a
700
hospital
bill
in
2018.
I
ended
up
in
the
hospital
again
after
developing
autoimmune,
hemolytic
anemia,
which
is
a
rare
blood
disorder
that
can
occur
with
lupus.
My
body
was
attacking
my
red
blood
cells,
causing
them
to
become
dangerously
low.
R
R
G
R
R
I've
been
going
as
a
medical
mystery
since
I
got
here
in
2004
with
the
symptoms
of
breaking
out
from
the
sun
allergic
to
sunscreen,
rapid
heart
rate,
not
knowing,
if
it's
a
stroke,
a
heart
attack
the
doctor
sending
me
downtown
because
they
didn't
have
doctors
on
base.
So
I've
been
like
in
between
doctors,
because
most
of
the
medical
doctors
are
actual
actual
medical
students
or
people
that
are
in
the
military.
So,
most
of
the
time
my
appointments
are
pushed
downtown.
R
So
the
only
problem
that
I
notice
is
that
going
to
the
emergency
room,
you
have
to
get
referrals
from
them
and
they
have
to
state
it's
from
it's
for
lupus,
but
they
don't
know
exactly
what
your
symptoms
are.
So
most
of
the
time,
I'm
just
getting
the
diagnosis.
Oh,
it's
your
lupus,
so
just
go
see
your
rheumatologist,
so
that
research
would
be
vital
for
people
in
the
military
or
people
who
don't
know
who
didn't
grow
up
and
find
out
earlier
in
life
that
they
were
diagnosed
with
lupus.
B
G
G
B
G
G
B
Thank
you
bps
for
your
support,
all
right,
we're
going
to
go
ahead
and
take
it
back
to
the
sponsor
for
closing
comments.
A
senator
neil,
would
you
mind
just
quickly
explaining
the
amendment
to
sb
175
so
that
we
have
it
on
the
record
before
you
do
your
closing
remarks.
Thank.
N
You
chair
ready,
I
did
forget
about
it,
so
basically,
the
amendment
of
the
bill
is
really
simple.
N
It
would
require
dhhs
to
coordinate
with
the
national
lupus
patient
registry
and
include
in
the
list
of
purposes
for
which
dhs
must
apply
for
and
accept
any
gifts,
grants
and
donations
in
section
10
to
coordinate
with
the
national
lupus
registry,
and
the
purpose
of
that
amendment
is,
I
want
to
put
dhhs
in
a
position
to
leverage
themselves
to
go
after
federal
funds
since
we're
not
a
part
of
the
lupus
registry,
and
I
believe
that
if
we
become
a
part
of
it
and
pass
legislation
to
start
the
surveillance
projects
that
have
been
going
on
since
2004
that
we
can
position
ourselves
to
start
asking
for
grants
well
really
applying
for
grants
to
help
move
this
agenda
forward
around
lupus.
B
Patients,
thank
you
senator
neil,
and
thank
you
for
bringing
the
bill
we'll
just
give
the
committee
one
last
chance
to
see
if
there
are
any
clarifying
questions
on
this.
Yes,
senator
spearman,
no.
M
Thank
you,
madam
chair.
So
the
issue
is
about
the
money.
I'm
wondering
if,
if
it's
possible
to
add
as
money
becomes
available,
would
that
still
put
dhhs
into
a
position
to
go
after
grants,
etc.
N
N
It's
a
good
policy,
but
whatever
the
wishes
of
this
committee,
I've
had
like
I'm
sorry
that
you
know
the
I've
had
like
a
super
crazy
headache
all
day,
but
hopefully
committee
can
find
support
at
least
get
the
policy
out
to
put
a
first
step
forward
to
maybe
allow
it
to
go
to
finance,
to
find
money
or
put
that
money
in
as
money
becomes
available.
B
M
I
was
just
I
I
saw
that,
but
it
seemed
like.
The
issue
was
the
money,
so
I
was
just
trying
to
figure
out
a
way
that
we
can
make
sure
that
it's
strong
enough
to
survive
and
then
whatever
gifts
or
grants
that
that
are
out
there,
they
can
still
go
for,
because
I
don't
want
us
if
we.
If
we
have
that
opportunity,
then
money
is
but
it
isn't
an
issue.
B
B
This
is
a
policy
committee,
so
this
this
committee
will
make
a
decision
based
on
the
merits
of
the
policy
because
it
has
financial
implications.
What
will
happen
then,
is
that
if
it
passes
out
of
this
committee,
it
will
get
picked
up
by
the
finance
committee
and
there'll
be
another
opportunity
for
another
conversation
to
talk
about
the
money
so
we'll
be
focused
on
policy
here.
B
I
also
want
to
make
sure
that
the
folks
who
are
on
the
call,
who
may
not
have
participated
in
something
like
this
before
know
that
we
don't
vote
on
the
bill
today.
So
by
legislative
rules,
there
has
to
be
some
separation
between
typically
between
the
time
we
hear
the
bill
and
the
time
we
vote
on
the
bill.
So
I
apologize,
but
you
won't
have
the
satisfaction
of
knowing
how
it
all
turns
out
today,
that'll
happen
at
a
future
committee
meeting
on
a
work
session.
B
L
L
L
He
has
been
faculty
at
the
nevada,
university,
nevada,
reno
school
of
medicine
and
in
2020
he
was
named
the
medical
director
for
reproductive
genetic
medicine
in
vitae
corporation,
I'm
also
joined
by
my
friend
abby
whitaker
abby
is
a
well-respected
and
award-winning
communication,
specialist
and
entrepreneur
she
and
her
husband
founded
the
abbey
agency.
L
L
That
would
be
inherent
mutations
of
breast
cancer
genes,
also
known
as
broncho1
and
bronchia
2.,
since
we
have
dr
slotnick
with
us
today,
I'm
going
to
let
him
cover
that
and
then
abby
is
going
to
tell
her
story
and
the
reason
I
brought
this
bill
was
abby
gave
me
a
call
several
months
ago
to
let
me
know
that
she
was
brock,
a
positive
and
when
and
she
asked
if
we
could
do
anything
about
about
it
and
to
make
sure,
there's
more
awareness
and
make
sure
women
get
screened
if
appropriate,
and
I
thought
that
we
could
do
that,
and
it
also
brought
to
mind
that
I,
within
the
last
five
years,
I
probably
have
a
half
dozen
friends
that
who
I
personally
know
who
have
been
diagnosed
as
bronchopositive
and
dr
slotnick
will
be
able
to
explain
the
high
risk
of
cancer.
L
If
you
are
bronchopositive
and
the
common
thread
with
all
my
friends
is,
they
had
been
fighting
cancer
for
a
while,
and
many
of
them
were
diagnosed
at
an
early
age.
But
the
dots
were
never
connected
that
they
may
have
had
a
hereditary
mutation
and
the
reason
it
matters.
If
you
have
the
genies
it
matters
for
your
the
woman
herself,
but
also
for
her
children,
because
it
is
hereditary,
so
I've
had
I've
had
friends.
L
I've
had
a
member
of
my
family
affected
by
this,
and
some
have
children
who
have
been
brocco
positive
and
some
have
been
negative.
But
the
the
key
that
we
need
to
remember
is
that
you
have
to
be
able
to
get
a
a
screening
and
a
referral
for
counseling
and
then
testing
so
I'd
like
dr
slotnick
to
start
and
then
have
abby
talk
about
her
personal
story
and
then
I'll
run
through
the
bill.
If
that's
okay
with
you,
chair,
ratty,
please
receive.
Thank
you,
dr
slotnick.
S
Thank
you
very
much.
I
very
much
appreciate
the
invitation
to
speak
with
you
today,
but
before
I
so
make
sure
that
I
compliment
compliment
senator
sivers
about
sievers
cancer,
sorry
with
for
to
have
the
energy
and
the
foresight
to
be
able
to
put
together
the
presentation
today,
it
is
her
energy
that
really
allows
me
the
honor
of
speaking
to
you
today.
S
So
my
name
is
nathan
slotnik,
I'm
a
medical
geneticist
and
today
we're
going
to
talk
about
an
increasingly
important
component
of
cancer
care,
a
subset
of
medical
genetics,
which
is
what
I
do
in
order
to
present
this
information
to
you
in
a
comprehensive
kind
of
way.
I'd
like
to
start
with
a
bit
of
background.
Now
we
are
what
we
are
because
of
what
we
inherit
from
our
parents.
Our
parents
give
us
instructions,
they
tell
the
cells
of
our
body
how
to
behave.
S
Those
instructions
tell
brain
cells
to
become
brain
cells
and
liver
cells
become
liver
cells.
The
instructions
are
called
genes.
The
genes
are
made
of
a
chemical
called
dna
and
the
dna
is
included
within
the
cells
of
our
body.
Now
each
human
adult
has,
in
their
body
approximately
30
trillion
cells.
All
of
those
cells
are
the
result
of
many
many
many
many
cell
divisions
from
a
single
fertilized
day.
N
B
B
B
A
Hi
chair
this
is
kayleen.
I
do
have
permission
to
interrupt
and
help.
Yes,
please,
okay,
mr
slotnik,
the
connection
is
kind
of
failing
out
right
now,
so
we
could
try
in
connecting
to
your
phone
chair
ratty.
Did
you
want
to
take
a
break
to
figure
this
out,
or
did
you
want
to
continue.
B
Let's
try
one
other
thing
perhaps
miss
dr
slotnick
could
turn
off
his
camera
and
sometimes
when
you're
having
some
internet
slow,
slow,
internet
problems,
the
turning
off
the
video
will
free
up
the
line.
So
could
we
try
that
first.
B
S
Thank
you
very
much.
The
point
I'm
trying
to
make
in
the
slide
is
to
say
that
cancer
results
from
a
change
in
the
dna
of
an
individual
cell
contract,
producing
a
control
less
cell
and
because
of
that
cancer
can
be
considered
as
a
genetic
condition.
S
So,
if
that's
the
case,
how
can
we
get
more
information
on
that
and
the
answer
comes
to
better
understanding
if
we
think
about
a
specific
form
of
cancer,
the
the
forms
of
cancer
that
I'll
talk
about
now
have
to
do
with
the
condition
called
hereditary,
breast
and
ovarian
cancer
syndrome.
This
is
a
syndrome
that
was
described
30
years
ago
now
by
some
researchers
in
california
and
in
nevada
by
the
way
and
results
from
a
mutation
in
a
particular
gene
called
the
rca1
or
brca2.
S
This
is
a
gene
that
has
been
appreciated
for
years,
but
its
clinical
impact
has
had
increasing
appreciation
over
the
years.
S
If
you're
a
woman-
and
you
have
a
mutation
in
brca
one
or
two,
the
impact
on
your
health
is
huge
by
age
40,
the
average
woman,
a
1
in
200
women
will
develop
cancer,
but
if
that
woman
had
a
mutation
in
brca1
or
2,
the
risk
of
cancer
to
her
is
anywhere
from
ten
to
twenty
percent
by
age.
Fifty
two
percent
of
the
population
of
women
will
develop
breast
cancer,
but
if
those
women
have
mutations
in
brca
one
or
two,
that
risk
goes
up
to
thirty
three
to
fifty
percent.
S
It's
a
huge
impact
on
the
population
lifetime
risks
are
affected
too.
One
in
eight
women
will
develop
breast
cancer
during
their
lifetime,
just
in
a
population
sense.
But
if
you
look
at
the
carriers
of
brca102
mutations,
you'll
find
that
the
risk
of
cancer
for
those
patients
is
anywhere
from
56
to
87,
but
it
doesn't
stop
there.
S
S
S
If
we
look
at
all
the
genes
related
to
breast
and
ovarian
cancer,
we'll
find
that
the
majority
80
85
percent
are
the
results
of
mutations
in
one
of
these
two
genes.
But
there
are
many
other
genes
as
well
and
to
overlook
those
genes
would
be
a
mistake,
so
we
are
now
offering
genetic
testing
for
many
different
genes.
Although
our
conversation
today
is
focusing
primarily
on
brca
one
or
two
again,
it
doesn't
stop
with
just
breast
cancer.
S
If
you
have
a
patient
with
breast
cancer,
five
percent
risk
that
patient
will
have
a
five
percent
risk
of
developing
a
second
independent
breast
cancer
within
five
years
of
the
original
diagnosis.
But
if
that
patient
has
a
mutation
in
one
of
these
two
brca
genes,
the
risk
goes
up
to
12
to
20
percent.
S
S
The
risks
are
increased
for
prostate
cancer,
for
melanoma
and,
most
importantly,
for
pancreatic
cancer
as
well,
and
for
those
reasons
there
are
certain
conditions
for
which
testing
for
brca102
has
been
recommended
and
is
now
standard
of
care
for
breast
cancer.
Breast
cancer,
under
the
age
of
45,
for
ovarian
cancer
at
any
age,
for
pancreatic
cancer
at
any
age
and
for
certain
forms
of
metastatic,
prostate
cancer
as
well.
So
this.
This
is
a
condition
that
can
influence
the
health
of
not
just
men
and
women,
but
whole
populations
can
can
be
affected
as
well.
S
Why
do
we
do
it?
Why
do
we
test
patients
in
anticipation
of
potential
risk
of
cancer?
Well,
the
answer
is
because
we
could
do
something
about
it.
If
you
have
a
mutation
in
brcare,
one
or
two,
you
know
your
risk
of
breast
cancer
is
dramatically
increased,
but
a
medication
as
simple
as
something
called
tamoxifen
will
reduce
the
risk
of
breast
cancer
in
a
patient's
lifetime
by
50.
S
If
you
have
a
brca1
or
2
mutation
and
worried
about
ovarian
cancer,
something
as
simple
as
ovarian
contraceptives,
birth
control
pills
can
reduce
risk
of
cancer
too.
S
Other
things
that
can
pop
to
the
mind
as
being
a
reasonable
options
include
prophylactic
surgical
procedures,
including
prophylactic
risk,
reducing
bilateral
mastectomies,
prophylactic
bilateral
salpingo,
orectomies
or
tube,
and
ovary
removal
and
and
ovarian
removal
itself.
All
of
these
are
surgical
procedures,
which
will
reduce
the
risk
of
cancer
for
women.
S
Now,
if
we
think
about
breast
cancer
as
a
genetic
condition,
how
does
that
happen?
Well
on
the
left
side
of
the
screen?
I
don't
have
a
pointer,
but
the
left
side
of
the
screen.
There
is
a
an
indication
of
a
particular
error
that
occurs
in
dna
synthesis.
That
error
is
called
a
dna
double-stranded
break
every
time
that
error
occurs.
S
S
So
for
that
reason,
considering
cancer
risk
and
considering
testing
should
be
part
of
every
patient's
assessment.
Anytime,
a
patient
is
seen
by
a
doctor.
There
should
be
a
discussion
of
family
history
and
personal
history
and
if
the
clinician
perceives
a
need
to
move
toward
testing
for
brca
one
or
two
mutations,
that
should
be
encouraged
and
is
something
that
can
have
a
huge
impact
on
the
health
of
them
and
men
of
the
state
of
nevada.
Thank
you
very
much.
L
B
B
Right,
dr
slotnick,
it
looks
like
you're
getting
off
easy
today,
so
thank
you
for
being
here
to
present
with
us.
Why
don't
we
go
ahead
and
turn
it
over
to
miss
whitaker
to
share
your
testimony,
hello.
I
Can
everyone
hear
me
awesome,
I'm
sitting
in
a
state
park
in
ely
nevada,
so
I
was
hoping
I
would
have
good
cell
reception.
My
name
is
abby
whittaker.
I
am
45
years
old
and
I
have
tested
positive
for
bracket
2.
I've
been
getting
mammograms
for
the
last
five
years
and
then
this
year
I
switched
to
reno
diagnostic
center.
I
Before
my
mammogram,
they
had
me
fill
out
a
questionnaire
asking
some
questions
about
my
family,
history,
etc,
etc,
and
when
I
went
in
for
my
mammogram,
they
said
that
I'd
been
flagged
to
potentially
take
a
free
genetic
test
and
I
was
like
you
sure
it's
free,
I'm
only
taking
it.
If
it's
free,
I
don't
want
to
pay
for
it
and
they're.
Like
you
know
it's
free,
so
I
took
the
genetic
test.
Had
my
mammogram
kind
of
forgot
about
it.
A
few
weeks
later
I
kept
getting.
I
I
got
a
call
from
amber
genetics
to
set
an
appointment
to
talk
with
me
about
my
test.
To
be
honest,
I
ignored
it
for
about
six
weeks
because
I
was
too
busy,
as
many
of
us
are
and
then
they
kept
calling
and
calling
I'm
like.
I
should
probably
talk
to
this
genetic
counselor.
It
sounds
like
it's
important.
They
got
me
on
the
phone
and
they
told
me
that
I
had
tested
positive
for
bracket
too.
I
didn't
really
understand
what
that
was,
and
I
didn't
really
know
a
lot
about
that.
I
What
they
told
me
was
that
it
would
increase
my
risk
over
my
lifetime
from
between
45
to
75
percent,
that
I
would
develop
breast
cancer
and
about,
I
think,
45
for
ovarian
cancer,
I'm
already
a
cancer
survivor.
I've
already
been
through
anal
cancer
and
chemo
and
radiation,
and
never
was
I
flagged
for
this
type
of
genetic
testing
or
flag
for
bracket.
I
go
to
the
doctor
all
the
time
I
have
so
many
blood,
so
much
blood
work
and
so
much
stuff
done
to
me.
I
You
think
that
maybe
they
would
have
caught
this,
but
understandably,
there's
a
lot
of
different
things
for
a
lot
of
different
procedures.
Thank
gosh,
the
reno
diagnostic
center
decided
to
ask
me
those
questions
so
that
it's
their
policy
to
ask
me
those
questions
because
now
I
know
I
have
eight
brothers
and
sisters
who
are
now
all
going
through
genetic
testing
to
know
if
they
too
have
brachiatu
or
bracha
one.
I
have
ten
cousins
throughout
the
world
who
are
also
going
through
that
testing.
I
Knowing
that
this
came
from
my
father's
side,
I
have
decided
that
on
april
15th
I
am
having
a
bilateral
double
mastectomy
and
then
I'm
going
to
have
a
hysterectomy.
After
that
I
am
able
to
make
that
choice,
because
reno
diagnostic
center
asked
me
some
simple
questions
about
my
genetic
history
and
I
was
able
to
find
out
that
I've
had
that.
I
have
brackitu
as
women
as
mothers
as
senators
as
career
people.
I
We
have
so
many
things
going
on
in
our
lives
and
the
fact
that
I
now
have
this
knowledge
and
that
I
can
make
that
decision
and
that
I
can
make
sure
that
I
don't
die
from
this
cancer.
It's
phenomenal
and
I
did
approach
senator
ganzard
well,
it
was
like
5am.
I
think
that
I
called
her
and
I
was
like
hey:
what
can
we
do?
I
What
can
we
do
and
she's
like
you
know
what
we
might
be
able
to
change
the
law
so
that
there
is
more
screening
and
the
more
women
and
men
know
this.
So
I
just
want
to
thank
her
and
all
of
I
know
many
of
you
signed
on
as
co-sponsors
for
this,
and
I
appreciate
it.
You
know
fighting
cancer
battling.
Cancer
is
something
that
none
of
us
want
to
have
to
do,
and
if
we
have
this
knowledge,
then
we
can
stop
it.
I
We
can
stop
it
with
my
daughter,
my
son,
your
daughter,
your
son,
and
I
think
that
that
is
a
wonderful
opportunity.
So
thank
you
today
for
listening.
Thank
you,
dr
slotnik.
Thank
you
to
everybody.
I
appreciate
it.
B
Thank
you,
miss
whitaker,
so,
ms
genser,
do
you
want
to
take
us
through
what
the
bill
actually
does.
B
I
L
Okay,
thank
you.
What
I'd
actually
like
to
do
is
start
with
an
amendment
that
was
posted,
because
this
helps
kind
of
simplify
the
process
of
going
through
the
bill.
So
I've
got
a
conceptual
amendment
that
was
posted
a
couple
of
days
ago
and
and
basically,
what
it
starts
out
to
say
is
this:
is
this
the
screening
and
getting
the
counseling
and
referral
for
testing
is
actually
covered
under
preventative
services
based
on
the
united
states,
preventative
services
task
force,
which
means
right
now
this
is
covered
by
by
the
feds.
L
It's
required
that
insurance
carriers
cover
again
the
the
screening,
the
referral
for
counseling
and
the
potentially
the
testing,
and
you
only
go
through
the
counseling
and
the
testing.
If
you've
had
this
personal
and
family
history
done,
which
indicates
that
you
have
or
you're
at
higher
risk,
so
you
do
that
screen,
which
is
super
simple
again.
L
It's
connecting
the
dots
and
and
part
of
what
audi
was
talking
about,
and
so
when
dr
slotnick
mentioned,
if
you
have
a
cancer
before
the
age
of
45
certain
types
of
cancers,
then
you
should
have
been
identified
to
be
referred
for
counseling
and
then
potentially
genetic
testing,
and
so
even
though
she
had
that
cancer
and
even
though
she
was
getting
mammograms,
even
though
she
was
going
to
physicians,
no
one
ever
flagged
her
until
she
had
a
a
bit
more
thorough
personal
and
family
history
taken
by
reno
diagnostic
center.
L
So
that's
part
of
the
key
is
it's.
The
insurance,
according
to
the
federal
federal
law
or
federal
code,
is
required
if
you
are
at
higher
risk
and
then
you
get
the
referral
and
then
potentially
testing,
and
so
that's
what
the
amendment
essentially
says
and
then
so
if
we
start
to
walk
through
the
bill,
that
would
have
been
part
of
section
one
section:
two.
L
What
we
did
also
is
created
a
flag
so
say
that
your
practitioner
doesn't
do
this
screening
when
you
go
get
and
get
a
mammogram
right
now
you
always
get
every
patient
will
get
a
report
back
and
on
that
report
we
have
a
notice
so
section,
two
number
three
describes
the
notice
10
to
20
of
all
cancers
can
be
categorized
as
hereditary
and
the
clinical
and
financial
value
of
identifying
patients
and
families
at
risk
is
well
documented.
L
If
you
have
a
personal
or
family
history
of
breast
ovarian,
fallopian,
tube,
paraneel
or
other
cancer.
Please
consult
your
physician
regarding
genetic
tests,
counseling
and
testing.
So
that's
a
flag
to
make
sure
that,
just
in
going
in
for
a
mammogram
that
we
can
raise
the
awareness,
then
we
can
drop
down
to
section
three
currently
in
statute
in
457,
which
is
the
cancer
statute
it
talks
about.
L
If
you
are,
if
you
have
violations
of
the
statute,
then
eventually
like
any
convicted,
if
you
would
be
guilty
of
a
category
d
felony,
what
we
did
is
we
actually
exempted
the
practitioners
from
a
category
d
if
they
had
not
followed
this.
This
is
something
new
and
I
don't
I
don't
think
practitioners
if
they
don't
follow.
This
exactly
should
be
onto
a
category
d
felony.
So
anyway,
that's
what
section
three
does
then
we
go
on
to.
Let
me
do
from
the
beginning
see
I
marked
it
up
the
exemption.
L
L
That
insurance
covers
again
that
screening
the
referral
for
counseling
and
then
potentially
the
testing,
and
it
doesn't
require
a
woman
or
a
man
to
get
the
testing,
but
it
basically
allows
them
to
get
it
and
have
insurance
coverage
for
that,
and
so
the
remain
of
the
bill
really
is
about
the
different
types
of
hospitals,
network
network
plans,
insurance
providers
and
so
forth
to
codify
in
nevada
statute.
What
is
already
required
in
federal
statute.
So
that
is
the
body
of
the
bill.
L
So
originally
the
bill
has
july
1st
of
2021,
but
I
think
that
we're
looking
towards
january
1st
of
2022,
so
they
can
update
their
plans
and
their
benefits.
And
then
the
other
thing
that
was
considered
is
once
you've
actually
taken
a
test,
a
genetic
test.
You
don't
necessarily
need
to
repeat
that,
so
we
could
also
consider
in
this
bill
that
once
you've
taken
a
test
that
we
don't
have
these
requirements
to
continue.
L
The
screening
and
the
referrals,
because
it's
already
been
done
so
that
in
general,
is
the
bill
and
again,
as
was
described
by
dr
slotnick,
when
you
test
positive
for
brca1
and
2,
the
odds
of
getting
cancer
are
off
the
charts
literally
in
your
lifetime.
It
can
be
as
high
as
87
percent.
I
think
we
really
need
to
raise
awareness
and
increase
the
screening
so
that
women
and
all
the
members
are
low.
L
Men
know
if
they
are
at
risk
so
that
they
can
take
appropriate
actions
and,
as
he
mentioned
it
could
be,
it
could
be
pharmaceuticals.
It
could
be
surgery
like
abby's
going
to
go
through,
but
what
we
want
to
do
is
make
sure
that
people
can
stay
as
healthy
as
possible,
and
abby
mentioned
her.
Her
kids,
her
cousins,
her
siblings,
because
it
is
a
hereditary
mutation.
L
I
I
can
tell
you.
I
had
a
friend
who
died
last
year
and
the
entire
time
I
knew
her
for
25
years
she
was
fighting
cancer
and
within
the
last
five
years
she
tested
positive
for
one
of
the
brca
genes
and
she
has
two
daughters
and
a
son,
both
daughters,
tested
positive.
The
son
was
negative
and
one
of
the
daughters
has
already
had
a
mastectomy,
a
double
mastectomy
at
the
age
of
30.
I
think
she's
32
now
and
and
it's
there's
sort
of
a
timeline
and
that
was
based
on
counseling.
L
So
again
you
have
to
decide
with
your
physician
what
you're
going
to
do,
but
in
her
case
and
given
the
family
history
that
she
has,
that
was
the
decision
was
made
and
then
we'll
we'll
have
testimony,
hopefully
a
little
bit
later
from
a
sister-in-law
of
mine
and
she
tested
positive
and
she'll.
Tell
you
her
story,
but
her
kids
both
tested
negative,
thankfully,
so
it's
one
of
those
things
it's
hereditary.
L
We,
we
know
how
to
diagnose-
and
I
guess
test
for
this,
so
I
really
believe
that
we
should
be
doing
it
because
it
can
save
lives.
It's
obvious,
it
can
save
lives.
So
I
thank
you
for
your
attention
this
evening
and
I
am
open
for
questions.
I
I
did
thank
you,
chair
ready
and
I'm
glad
I
waited
until
after
after
the
presentation
I
was,
I
really
was
appreciative
of
the
exemption
from
the
felony
requirement,
and
so
my
question
is:
is
there
any
kind
of
stick
to
this
carrot
to
kind
of
encourage
doctors
to
comply
with
the
law.
L
Thank
you
senator
harris
with
that
question
right
now.
I
don't
have
a
stick.
This
is
something
that's
that's
brand
new
and
you
know
when
you
think
about.
When
you
go
to
the
position,
they
usually
do
a
family
history.
They
always
do,
but
it's
that
connecting
dots
and
right
now
there
are
tools
that
have
been
developed
and
that
are
being
developed
that
make
that
really
easy
for
practitioners,
and
that
would
be
an
md
a
do
a
nurse
practitioner,
several
several
types
of
practitioners.
L
So
so
no
there's
not
a
there's,
not
a
stick,
but
I
really
hope
that
this
strongly
encourages
them,
and
I
have
been
talking
to
the
medical
association,
obs
and
and
so
forth
about
this
to
try
to
get
this
implemented.
So
thank
you.
E
L
For
the
record,
senator
heidi
seepers
cancer-
and
it's
not
in
replace
of
it,
just
allows
them
to
count.
So,
as
you
mentioned,
there
are
certain
categories
that
are
required,
but
there's
actually
more
cmes
required
than
are
categorized.
I
believe-
and
so
it's
it's
a
choice
that
you
can
make,
but
you
can
get
credit
for
genetic
instruction.
E
L
E
M
G
G
G
A
Now
tom
clark,
that's
t-o-m-c-l-a-r-k,
I'm
testifying
today
in
support
of
the
legislation
on
behalf
of
the
nevada
association
of
health
plans.
We
want
to
thank
the
senator
for
bringing
the
bill
and
also
thank
her
for
working
with
us
on
the
conceptual
amendment
that
has
been
brought
forward.
This
is
a
really
important
issue,
and
hopefully
we
can
increase
some
awareness
and
get
folks
like
my
friend,
abby,
assessed
and
tested,
and
thank
you.
B
G
R
C-A-R-I-H-E-R-I-N-G-T-O-N
I'm
executive
director
for
nevada
cancer
coalition
good
afternoon
chiarati
and
members
of
the
committee.
We
thank
senator
sivers
ganssert
for
bringing
this
forward
and
we
support
the
intent
of
this
bill
to
provide
formal
risk
assessment
for
breast
cancer
and
notification
to
women
of
her
risk
factors
specific
to
the
bracha
gene
mutation.
R
This
follows
legislation
passed
during
the
2013
session
to
notify
women
with
dense
breast
tissue,
also
a
risk
factor
for
breast
cancer.
The
american
society
of
breast
surgeons,
screening
recommendations
which
have
been
adopted
by
providers
across
our
state
as
the
most
up-to-date
and
research-based
recommendations,
states,
women,
beginning
at
age
25,
should
undergo
formal
risk
assessment
for
breast
cancer,
which
may
include
genetic
testing.
R
The
aca
requires
health
insurance
plans
to
provide
coverage
for
mammography
screening
only
once
every
two
to
one
or
two
years
for
women
over
40..
However,
if
a
woman
has
these
risk
factors
for
breast
cancer,
there
is
additional
testing
that
could
leave
her
with
hundreds
of
thousands
of
dollars
in
out-of-pocket
costs.
R
While
limited
genetic
testing
is
available
for
the
bracha
gene
mutation,
it
could
give
a
sense
of
false
hope
for
one's
cancer
risk
by
not
including
other
known
genes.
Most
patients
should
undergo
a
broader
panel
test,
as
dr
stocknet
mentioned,
which
should
be
covered
completely,
while
nevada
is
making
great
strides
in
notifying
and
informing
women
of
their
increased
risks
and
recommended
cancer
screenings,
we
need
to
ensure
they
are
also
provided
the
support
full
genetic
testing
and
yearly
screening
options
that
are
right
for
them
all
without
any
out
of
pocket
costs.
Thank
you
very
much.
R
R
G
A
My
name
is
george
ross
g-e-o-r-g-e-r-o-s-s
on
speaking
on
behalf
of
comprehensive
cancer
centers
of
nevada.
The
acronym
cccn
cccn
would
like
to
thank
senator
stevens
gansster
for
bringing
forward
this
very
important
bill
very
much
in
favor
of
the
bill
and
very
much
in
favor
of
the
conceptual
amendment.
We
would
request
that,
when
the
final
draft
of
that,
when
the
draft
of
that
conception
limit
is
ready,
we'd
like
the
opportunity
to
review
it,
because
a
word
or
phrase
can
which
could
be
maybe
slightly
different
than
it
sure
could
have
been
or.
G
J
I
am
in
support
of
sb
251
after
listening
to
abby
whitaker.
My
story
is
somewhat
similar
to
hers
and
that
I
was
never
flagged
during
the
course
of
my
breast
cancer
history.
It
all
started
36
years
ago
in
1985
I
was
diagnosed
with
breast
cancer.
On
my
left
side
I
had
a
mastectomy.
J
J
In
2015
I
went
to
my
annual
gynecology
appointment
and
my
gynecologist
said:
hey
you're
eligible
for
bracket
testing.
Let's
get
you
tested,
I
met
criteria
because
I
had
breast
cancer
when
I
was
30
years
old.
My
test
came
back
positive
during
that
time.
They
said
that
if
a
woman
tested
positive
for
the
brca2,
she
had
a
50
chance
of
developing
ovarian
cancer,
a
90
percent
chance
of
developing
breast
cancer.
J
Well,
I
jumped
on
it
and
two
months
later
I
had
a
total
hysterectomy
done
thinking
that
well,
I've
had
two
mastectomies,
one
for
breast
cancer
and
the
other
one
preventative.
I
thought
oh
right,
I'm
doing
great
well,
it
didn't
turn
out
that
way.
In
2017
I
was
diagnosed
with
breast
cancer.
On
my
preventative
mastectomy
side.
I
guess
maybe
a
piece
of
breast
tissue
had
been
left
behind
so
anyway,
I've
had
breast
cancer
on
both
sides.
Over
the
last
36
years,
I
am
brca2
positive.
J
I
have
a
son
and
daughter,
and
I
was
told
it'd
be
50
50,
whether
they
carried
that
mute
patient,
both
of
them
tested
negative.
My
as
far
as
my
family
history
goes,
it's
vague.
My
mother
never
had
breast
cancer.
To
my
knowledge-
and
I
don't
know
anyone
on
either
side
of
the
family,
my
mother
or
my
father's
side
having
breast
cancer.
J
I
have
a
granddaughter
that's
going
to
be
born
in
may,
and
that's
on
the
back
of
my
mind
now
that
this
baby
eventually
will
have
to
be
tested
for
the
bracket
gene,
who
knows,
maybe
it
skips
the
generation
but
anyway.
That
is
my
story
and
I
thank
senator
sivers
gansard
for
asking
me
to
join
in.
G
R
Hi
senator
rowdy
and
members
of
senate
health
and
human
services,
my
name
is
kendall
k,
cervino
n
d,
a
h,
l
s
e
r
v
victor,
I
n
o
I'm
a
medical
student
at
unr
and,
more
recently,
a
breast
cancer
survivor
being
diagnosed
with
breast
cancer.
20
years
old
was
the
biggest
shock
of
my
life
and
the
hardest
challenge
I've
ever
had
to
face
over
the
course
of
a
year
I
received
chemotherapy.
R
I
come
here
today
to
share
the
importance
of
brachygenetic
testing
and
of
having
the
spill
passed
after
I
was
diagnosed.
The
first
thing
my
doctor
did
was
refer
me
for
genetic
testing.
This
was
critical
in
determining
whether
my
current
or
future
family
would
be
at
risk.
Identifying
risk
status
is
crucial
in
catching
breast
cancer
early
or
before
it
even
occurs.
R
Providing
genetic
testing
resources
is
the
first
step
in
mitigating
breast
cancer,
a
disease
that
has
already
impacted
so
many
lives
in
our
state,
as
demonstrated
by
all
the
tested
people.
All
the
testimonies
before
me.
Thank
you
for
having
me
today
and
thank
you,
senator
stevers
cancer
for
introducing
this
bill.
G
G
G
J
J
So
suffice
it
to
say
that
these
numbers
are
obviously
significant,
ensuring
that
women
are
screened
and
those
that
are
average
women
have
the
ability
to
get
genetic
testing
is
critical
to
preventative
care.
This
bill
can
and
will
quite
literally
save
lives.
We
urge
your
support
and
thank
you
for
your
time
today.
A
A
G
G
G
G
R
For
the
record,
my
name
is
aaron
lynch
e-r-I-n
lynch
l-y-n-c-h,
I'm
the
chief
of
the
medical
programs
unit
at
the
division
of
healthcare
financing
and
policy,
and
the
division
is
testifying
as
neutral
on
senate
bill.
251
nevada
medicaid
already
covers
genetic
screening,
testing
and
counseling
for
broca
1
and
2
gene
mutations
for
women
who
meet
the
criteria
in
the
bill.
R
This
includes
policy
coverage
in
medicaid
services,
manual,
chapter
600,
physician
services
and
medicaid
services,
manual,
chapter
800,
laboratory
services,
and
we
also
cover
this
for
men
as
well,
and
we'd
like
to
state
that.
Therefore,
the
division
of
health
care,
finance
and
policy
has
a
zero
dollar
fiscal
note
on
this.
G
K
Hi,
I'm
robin
palmer
r-o-b-b-I-n-p-a-l-m-e-r,
I'm
a
certified
genetic
counselor.
My
focus
is
on
hereditary
cancer.
I
provide
hereditary
cancer
risk
assessment
to
individuals
and
coordinate
genetic
testing
for
hereditary
cancers.
I'm
also
an
alumnus
of
the
city
of
hope,
duarte,
california,
internationally
recognized
10-week
intensive
course.
In
cancer
genetics,
I'm
the
only
practicing
genetics
professional
in
northern
nevada.
I
believe
I've
proven
provided
written
documentation
of
my
comments
more
extensive
than
what
I
have
time
here.
K
I
think
sb
251
is
well
intentioned,
but
as
a
genetics
professional,
I
have
several
concerns
about
sb251
and
those
concerns
mirror.
My
concerns
with
the
current
legislation.
Number
one
who
can
provide
united
counseling
is
poorly
specified
by
sb
252.
Genetic
counselors
are
not
licensed
in
the
state
of
nevada,
as
they
are
in
most
other
states.
Genetic
counseling
is
undefined
in
the
state
of
nevada,
mirroring
current
legislation.
K
Tb251,
I'm
sorry,
sb
251
authorized
certain
providers
to
receive
credit
for
continuing
education
relating
to
genetic
counseling
and
testing
and
the
quotes.
I
know
of
no
state
of
nevada
requirements
for
the
amount
of
continuing
education
required
criteria
for
defining
an
acceptable
course
of
instruction.
K
K
K
Many
providers
do
not
know
that
in
an
affected
woman,
certain
pathological
characteristics
of
her
breast
cancer
suggest
hereditary
breast
and
ovarian
cancer
hereditary
cancer
risk
assessment
is
difficult
and
takes
expensive
and
continual
training
to
stay
abreast.
No
pun,
intended
of
the
complex
and
evolving
specialty
of
hereditary
cancer,
three
recommended
by
the
national,
comprehensive
cancer
network
and
accepted
practice
by
genetics
providers
is
to
offer
broader
genetic
testing
for
hereditary
breast
cancer
than
just
brca
genetic
testing.
K
If
the
gene
that
is
mutated
is
not
included
in
the
testing,
four
genetic
test
results
are
prone
to
misinterpretation
by
unknowledgeable
providers.
Genetic
testing
often
does
not
provide
a
simple,
yes
or
no
answer.
A
genetic
test
result
may
be
of
uncertain
significance
or
require
additional
testing,
such
as
a
skin
biopsy,
to
clarify
its
significance.
K
B
G
Chair
at
this
time,
there
are
no
more
callers
wishing
to
give
a
testimony
in
a
neutral
position.
B
I
Chair
ready,
senator
sears
answered,
I
was
just
reviewing
the
bill
again
and
I
wanted
to
note
that
a
violation
of
section
one
would
still
be
a
misdemeanor,
and
so,
if
it's
your
intention
to
take
away
all
penalties,
you
may
want
to
get
another
amendment
on
there
to
exempt
it
from
that
as
well.
A
B
B
There's
no
fiscal
note,
because
these
are
services
that
are
already
available,
at
least
everybody
on
the
medicaid
population,
and
I
think
you
testified
earlier
that
we're
already
doing
this
with
the
rest
of
the
insurance
companies
and
I
believe
you
reference
federal
law.
I
think
it's
part
of
the
essential
benefits
that
are
included
in
the
affordable
care
act
by
reference
to
preventative
services.
Is
that
your
understanding?
B
L
B
So
so
I
guess
my
question
is
the:
why
have
the
insurance
components
in
the
bill
if
these
are
things
that
folks
are
already
doing.
L
In
talking
to
lcb
legal,
they
said
if
we
were
able
to
put
this
in
the
bill,
then
we
would
preserve
the
coverage,
even
if
it
was
changed
at
a
federal
level.
So
we
want
to
make
sure
that
the
nevadans
have
access
to
this
counseling
and
into
the
testing
in
nevada.
So
that's
why
we're
looking
to
put
it
in
a
statute.
B
Any
changes
in
federal
policy
and
nevada
is
still
good
correct.
Thank
you
all
right,
any
other
additional
questions.
L
Thank
you
again
for
the
record,
senator
heidi
sievers
gansard.
You
know
a
couple
comments
that
have
been
brought
up.
One
is
about
there's,
there's
other
genetic
mutations
out
there
and
we
should
be
testing
for
those
right
now.
L
Federal
code
covers
brca1
and
brsa2,
and,
and
there
are
other
things-
and
I
think
genetic
medicine
will
be
refined
over
the
years,
but
I
don't
want
to
not
have
testing
for
these
mutations,
which
we
know
are,
can
be
very
lethal
because
we're
not
doing
other
things
right.
So
if
we
can
get
testing
before
brca1
and
brca2,
when
you
looked
at
the
the
pie,
charts
that
were
provided
by
dr
slotnik,
you
can
see
the
the
magnitude
of
how
many
people
potentially
could
test
positive
and
then
what
the
outcomes
could
be.
L
So
I
want
to
make
sure
that
we
do
that,
and
then
we
have
some
testimony
about
counseling
and
that's
part
of
the
reason
I
put
the
cma
cme
continuing
medical
education
piece
in
there
because
it
does
sound
like
we
don't
have
a
lot
of
genetic
counselors.
L
The
decisions
may
be
that
they
have
a
mastectomy,
but
those
decisions
can
be
made
between
a
patient
and
a
woman,
and
I
think
that
making
sure
that
we
have
folks
screened
is
extremely
extremely
important,
and
there
also
was
some
discussion
about
what
that
stream
looks
like,
and
I
can
tell
you
there's
some
tools
that
are
out
there
that
have
been
out
there.
I
was
trying
to
find
my
document
from
the
american
cancer
society,
but
it
it
basically
pinpoints
some
tools
that
are
out
there,
but
it's
really
looking
at
a
personal
history.
L
So
again,
if
you're
under
a
certain
age
and
you've
had
a
cancer,
certain
types
of
cancer
or
your
family
history,
and
as
I
would
imagine
all
of
you
know
when
you
go
to
the
doctor,
they
do
your
family
history.
So
this
is
sort
of
one
more
step,
a
little
step
deeper
in
family
history,
to
identify
those
who
should
get
referred
and
potentially
tested,
and
I
think
that
we
can
end
up
saving
a
lot
of
lives
if
we
get
the
awareness
up
and
the
assessments
and
testing
and
done
all
those
where
appropriate.
B
All
right
we're
going
to
go
ahead
and
close
the
hearing
on
sb
251
by
way
of
announcements.
Our
next
meeting
will
be
held
on
march
23rd
and
we
do
have
a
number
of
bills
to
be
heard
on
that
day.
So
I'll
just
encourage
folks
to
go
check
out
the
agenda
on
nellis
on
our
legislative
website
to
see
what
we
might
be
talking
about
next
tuesday,
and
with
that
I'm
gonna
go
ahead
and
open
up
public
comment.
B
G
G
B
Okay.
Well
then,
I
guess
that
is
a
wrap.
Thank
you
to
our
committee
members
for
your
good
attention
to
all
of
the
sponsors
who
brought
bills
today.
I
would
also
like
to
express
a
special
gratitude
to
the
patients
who
joined
us
today
on
both
bills:
sb,
175
and
sb
251.
It
always
makes
these
meetings
significantly
richer
if
we
have
the
voice
of
our
patients
at
the
table.
B
So
thank
you
to
everyone
who
made
the
time
and
of
always,
of
course,
ms
kamasi
and
mr
robbins,
our
lcb
staff
and
everybody
at
bps,
and
it
has
been
keeping
us
going.
So,
thank
you.
Everyone.
This
meeting
is
adjourned,
we'll
see
at
the
next.