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Who hiv 2012.29_eng
1. WHO/HIV/2012.29
Annex
8:
Values
and
Preferences
report
Based
on
interviews
with
community
members
affected
by
and
providers
working
on
viral
hepatitis
Background
paper
for
WHO
consultation
on
viral
hepatitis
prevention,
surveillance
and
treatment
2. 2
Acronyms
and
Abbreviations
3TC
lamivudine
ART
antiretroviral
therapy
ARV
antiretroviral
AZT
zidovudine
FTC
Emtricitabine
HBV
hepatitis
B
virus
HCV
hepatitis
C
virus
HDV
hepatitis
D
virus
HIV
human
immunodeficiency
virus
LDSS
low
dead
space
syringe
NGO
non-‐governmental
organization
NSP
needle
and
syringe
programs
OST
opioid
substitution
therapy
PLHIV
persons
living
with
HIV
PWID
people
who
inject
drugs
STI
sexually
transmitted
infections
TDF
tenofavir
WHO
World
Health
Organization
3. 3
Background
Information
It
is
estimated
that
350
million
people
are
chronically
infected
with
Hepatitis
B
virus
(HBV);
and
130-‐
170
million
people
are
chronically
infected
with
Hepatitis
C
virus
(HCV).1,2
Co-‐infection
with
HBV
and/or
HCV
with
HIV
is
increasingly
recognized
as
a
major
public
health
problem.
In
certain
regions,
up
to
10%
of
all
people
living
with
HIV
(PLHIV)
are
co-‐infected
with
chronic
hepatitis
B;
and
25%
are
co-‐infected
with
chronic
hepatitis
C.3
Viral
hepatitis
B
and
C
disproportionally
affect
people
who
inject
drugs
(PWID)
as
a
result
of
unsafe
injection
practices.
It
is
estimated
that
1.1
million
PWID
have
HBV
and
10
million
have
HCV.4
The
largest
populations
are
in
Eastern
Europe,
East
Asia
and
South-‐East
Asia.
Although
HBV
is
preventable
by
vaccination,
the
rate
of
vaccination
among
people
who
inject
drugs
is
low.
In
addition,
although
both
chronic
HBV
and
HCV
can
be
effectively
treated
and,
sometimes
cured,
very
few
PWID
access
treatment
because
of
the
high
cost
and
other
barriers
to
accessing
the
health
system.
Liver
disease
is
currently
one
of
the
leading
causes
of
morbidity
and
mortality
in
HIV-‐infected
populations,
particularly
in
settings
where
antiretroviral
therapy
(ART)
access
is
being
expanded.
It
is
well
established
that
HIV
has
a
negative
impact
on
the
natural
history
of
HBV
and
HCV,
with
a
higher
rate
of
viral
persistence,
and
more
rapid
progression
to
fibrosis,
end-‐stage
liver
disease
and
death.
Current
World
Health
Organization
(WHO)
ART
guidelines
recommend
the
earlier
initiation
of
ART
in
HIV-‐HBV
co-‐infected
individuals
with
chronic
active
hepatitis
B,
irrespective
of
CD4
count,
when
treatment
for
hepatitis
B
is
indicated.
Although
guidelines
for
managing
hepatitis
B
and
C
have
been
developed
with
high
and
middle-‐income
countries,
there
are
currently
no
global
WHO
clinical
or
programmatic
guidelines.
In
order
to
address
this
unmet
need,
WHO
has
been
requested
by
countries
to
develop
guidance
on
viral
hepatitis
prevention
among
PWID
in
low-‐income
and
middle-‐income
countries.5
The
WHO
guidance
will
be
designed
to
meet
the
needs
of
government,
policy
makers,
donors,
non-‐
governmental
organizations,
programme
managers,
health
care
providers,
patient
support
groups
and
advocates
supporting
viral
hepatitis
prevention.
A
systematic
review
of
the
evidence
has
already
been
undertaken
to
inform
recommendations
and
as
a
basis
for
this
guidance.
The
individual
needs
and
challenges
of
the
people
whose
lives
will
be
affected
by
this
guidance
are
best
understood
by
those
who
are
meeting
those
challenges.
Through
this
paper,
their
inputs
provide
a
personal
dimension
to
the
work
of
the
experts
participating
in
the
technical
review
for
the
preparation
of
this
guidance.
From
December
2011-‐February
2012,
a
qualitative
survey
was
conducted
to
collect
the
personal
experiences
and
perspectives
of
members
of
civil
society
and
service
providers
working
on
viral
hepatitis
in
sub-‐Saharan
Africa,
Asia,
Europe,
Latin
America
and
North
America.
Although
the
guidance
will
focus
specifically
on
viral
hepatitis
prevention
among
PWID,
respondents
were
asked
a
1
WHO.
Hepatitis
B
Fact
Sheet
N
o
.
204.
Geneva,
WHO,
2008.
http://www.who.int/mediacentre/factsheets/fs204/en/index.html
2
WHO.
Hepatitis
C
Fact
Sheet
N
o
.
164.
Geneva,
WHO,
2011.
http://www.who.int/mediacentre/factsheets/fs164/en/index.html
3
Soriano
V
et
al.
Viral
Hepatitis
and
HIV
co-‐infection.
Antiviral
Research,
Jan;
85
(1):
303-‐15,
2010.
4
Nelson
et
al.
Global
epidemiology
of
hepatitis
B
and
hepatitis
C
in
people
who
inject
drugs:
results
of
systematic
reviews.
The
Lancet,
Volume
378,
Issue
9791,
13
August
2011.
5
Sixty-‐third
World
Health
Assembly,
Resolution
63.18.
Viral
Hepatitis.
WHO,
Geneva,
21
May
2010.
4. 4
broader
range
of
questions
e.g.
on
testing
and
treatment.
The
results
from
those
questions
are
also
presented
in
this
report.
This
report
documents
the
main
issues
discussed
with
respondents,
and
it
will
contribute
to
the
systematic
review
to
inform
recommendations
and
to
prepare
guidance
on
viral
hepatitis
prevention
among
PWID.
Methods
A
qualitative
study
was
conducted
to
ensure
that
the
experiences
of
people
living
with
viral
hepatitis
or
who
are
service
providers
are
considered
along
with
the
technical
review
of
evidence
that
will
form
the
basis
of
the
guidance
on
prevention
of
viral
hepatitis
among
PWID.
An
independent
consultant
was
hired
to
conduct
a
survey
to
ensure
neutrality
in
the
discussions
with
respondents
and
analysis
of
findings.
Seventeen
people
were
identified
through
international
organizations
and
NGO
networks
and
asked
to
participate
in
anonymous,
semi-‐structured
interviews
regarding
their
personal
experiences
and
views
on
hepatitis
testing,
HBV
vaccination,
prevention
programs
for
PWID,
hepatitis
treatment
and
co-‐infection
with
HIV.
Fourteen
interviews
were
conducted
individually
by
phone
or
Skype.
One
interview
was
conducted
in
person
by
the
consultant,
and
two
respondents
provided
written
inputs.
All
participants
have
been
tested
for
hepatitis
and
currently
are
involved
in
programmes
addressing
issues
around
hepatitis
prevention
and
treatment
access.
A
semi-‐structured
interview
guide
was
developed
to
guide
and
ensure
uniformity
of
interviews,
to
identify
emerging
themes
and
to
facilitate
analysis
of
findings
(See
Annex
1).
All
interviews
were
approximately
one
hour
in
length
and
most
questions
were
open-‐ended
to
allow
for
free
discussion
of
individual
experiences,
motivations,
perspectives
and
concerns.
Interviews
were
not
recorded,
but
extensive
notes
were
taken
in
order
to
ensure
that
respondents’
inputs
were
accurately
reflected
in
the
report.
Verbal
consent
to
be
interviewed
was
obtained
from
all
participants,
and
participants
were
free
to
seek
clarification
and
to
decline
to
answer
any
questions
or
to
discuss
any
topics.
For
the
question
on
the
rapid
regimen
for
the
HBV
vaccine
regimen,
the
consultant
initially
incorrectly
described
the
rapid
regimen
to
interview
participants.
After
realizing
her
mistake,
the
consultant
emailed
the
fourteen
participants
that
she
discussed
this
question
informing
them
of
her
mistake
and,
based
on
correct
information,
re-‐asked
the
question.
Twelve
of
the
fourteen
participants
responded
to
her.
These
responses
are
presented
in
the
results
section
of
this
report.
The
consultant’s
qualitative
analysis
of
the
discussions
shapes
the
narrative
sections
of
this
report.
These
are
intended
for
consideration
in
the
formulation
of
recommendations
on
prevention
of
viral
hepatitis
among
PWID.
Topics
of
the
interviews
included:
• Hepatitis
testing
• HBV
vaccination
• Prevention
for
PWID
• Hepatitis
treatment
• Co-‐infection
with
HIV
Demographics
5. 5
Table
1.
Respondent
profile
by
gender
and
nationality
Africa
Asia
Middle
East
L.
America
Russia
/
CIS
Australia
Europe
N.
America
Women
-‐
-‐
-‐
3
2
Men
1
5
2
1
3
Table
2.
Respondent
profile
by
gender
and
age
30-‐39
40-‐49
50-‐59
Women
3
-‐
2
Men
2
6
4
Thirteen
of
the
17
of
key
respondents
are
living
with
HCV.
Eight
of
the
13
people
with
HCV
are
also
infected
with
HIV
(n=6),
HBV
or
HDV.
One
of
the
respondents
is
not
(and
has
never
been)
infected
with
viral
hepatitis
or
HIV.
Table
3.
Respondent
profile
by
gender
and
viral
hepatitis
and
HIV
status.
One
of
the
women
respondents
did
not
report
infection
with
viral
hepatitis
or
HIV.
HBV
HBV
HCV
HCV
HCV
HIV
HBV
HCV
HDV
HBV
HCV
HDV
HIV
Women
-‐-‐
1
1
1
1
-‐
Men
3
-‐
4
4
-‐
1
Hepatitis
testing
“My
doctor
says
I
have
hepatitis,
but
I
shouldn’t
worry
about
it.”
Participants
had
varying
experiences
with
testing.
The
most
common
theme
expressed
by
participants
was
a
lack
of
knowledge
by
both
the
testing
providers
and
participants
themselves.
This
lack
of
knowledge
was
expressed
as
misinformation
delivered
by
providers
to
participants
in
addition
to
participants’
own
lack
of
knowledge
about
Viral
Hepatitis.
The
timing
of
testing
also
contributed
to
the
amount
of
available
knowledge.
For
participants
tested
in
the
early
1980’s,
there
was
less
available
knowledge
than
for
those
tested
in
the
last
10
years.
Many
participants
expressed
relief
that
they
were
infected
with
“only”
HCV
and
not
HIV.
One
patient
whom
initially
tested
positive
for
HIV
was
not
tested
for
HCV
until
experiencing
liver
problems
years
later.
This
was
because
he
did
not
“fit
the
profile”
of
someone
who
would
have
HCV.
All
participants
were
unanimous
in
saying
that
testing
should
be
available
in
locations
most
convenient
to
the
clients.
Based
on
the
responses
from
participants
in
different
regions,
it
seems
that
this
decision
should
be
dependent
on
the
setting.
For
example,
some
participants
from
developed
countries
said
that
testing
should
absolutely
not
be
offered
at
needle
and
syringe
programs
(NSP)
since
PWID
did
not
want
to
spend
more
time
than
necessary
at
these
sites.
On
the
other
hand,
participants
from
Asia
recommended
NSP
as
a
setting
to
offer
testing.
Methadone
and
opioid
substitution
therapy
(OST)
programs
were
recommended
provided
that
testing
not
be
used
as
an
incentive
to
access
services.
Other
participants
addressed
that
testing
needs
to
be
made
available
for
persons
who
did
not
inject
drugs
also
e.g.
hospital
hepatitis
units.
The
overall
feeling
was
that
6. 6
viral
hepatitis
testing
should
be
linked
to
other
services,
inclusive
of
HIV
services,
and
should
include
counseling
as
part
of
the
testing
package.
Overall,
participants
stated
that
persons
who
should
be
prioritized
for
HCV
screening
are
PWID,
prisoners
and
persons
from
countries
where
HCV
(e.g.
Egypt)
and
HBV
(e.g.
China)
are
endemic.
Prevention
of
onward
transmission
was
the
most
common
cited
benefit
of
knowing
one
has
HCV
and/or
HBV.
Treatment
of
the
disease
was
the
second
most
common
benefit
of
knowing
one’s
hepatitis
status.
HBV
Vaccination
The
majority
of
participants
have
been
vaccinated
for
HBV.
Reasons
cited
for
not
being
vaccinated
were
they
have
already
been
infected
with
HBV
(and
now
have
natural
immunity),
it
was
never
offered
to
them
and
because
they
did
not
want
to
bother
with
something
else.
Although
most
participants
were
vaccinated,
they
still
reported
barriers
to
being
vaccinated
in
the
first
place.
The
most
common
was
the
number
of
injections.
Participants
found
that
needing
to
return
to
the
doctor’s
office
three
times
to
complete
the
full
course
was
inconvenient.
It
was
also
difficult
for
some
participants
to
remember
to
return
for
those
visits.
All
participants
agreed
that
PWID
should
be
prioritized
to
receive
the
HBV
vaccination.
It
was
also
recommended
that
prisoners,
migrants
and
other
people
originally
from
HBV
or
HCV
endemic
countries
should
also
be
prioritized
for
the
HBV
vaccine.
Prevention
programs
for
PWID6
“It
is
important
that
programs
address
the
importance
of
ALL
paraphernalia
being
clean
for
HCV
prevention.
“
In
general,
most
participants
said
that
the
basic
harm
reduction
package,
as
recommended
by
WHO7
,
is
available
in
their
country.
(The
exception
to
this
is
that
participants
in
Russia
do
not
have
access
to
OST.)
The
quality
and
size
of
the
specific
harm
reduction
programs
varies
by
country.
There
is
very
limited
HCV
focused
prevention
happening
in
any
of
the
participants’
countries.
Most
of
the
reported
HCV
prevention
seems
to
piggyback
on
existing
HIV
prevention
programs.
All
participants
were
asked
if
they
would
recommend
that
their
countries
implement
additional
hepatitis
prevention
programs
other
than
the
existing
programs.
Participants
from
Russia
recommended
OST;
and
one
participant
from
the
global
North
recommended
syringe
vending
and
disposal
machines.
“Programs
that
are
well-‐received
generally
include
current
and
former
PWID.
Providers
do
not
know
anything
about
HBV
or
HCV;
and
there
is
an
enormous
amount
of
stigma.”
All
persons
interviewed
for
this
survey
have
been
both
recipients
and/or
providers
of
preventions
services
for
PWID.
These
services
include
NSP
as
well
as
HIV
and
HCV
awareness
campaigns.
The
overarching
belief
is
that
all
services
must
be
friendly
to
drug
users.
This
means
that
the
persons
providing
the
services
should
not
stigmatize
or
infantilize
the
PWID
accessing
the
services.
Primarily
participants
from
more
developed
countries
stated
that
they
believe
current
and
former
drug
users
6
When
describing
which
prevention
programs
are
available
for
HCV
prevention
in
their
country,
none
of
the
participants
cited
the
WHO/UNAIDS/UNODC
harm
reduction
package.
They
described
components
included
in
the
harm
reduction
package.
In
fact,
only
50%
(9/17)
of
those
interviewed
stated
that
they
have
heard
of
the
WHO/UNODC/UNAIDS
recommended
HIV
prevention
interventions
for
PWID.
7
WHO,
UNODC,
UNAIDS.
Technical
Guide
for
countries
to
set
targets
for
universal
access
to
HIV
prevention,
treatment
and
care
for
injecting
drug
users.
Geneva,
WHO,
2009.
http://www.who.int/hiv/pub/idu/targetsetting/en/index.html
7. 7
are
best
suited
to
deliver
services
to
PWID
because
they
often
feel
stigmatized
and/or
judged
by
health
care
workers.
HBV
vaccination
for
PWID
-‐
Setting
Regarding
the
setting
for
vaccination,
participants
expressed
various
opinions
from
location
to
mode
of
service
delivery.
In
general,
it
is
felt
that
vaccination
should
be
available
at
the
same
locations
as
testing.
One
participant
suggested
that
vaccination
also
be
available
at
STI
clinics
and
in
correctional
facilities.
Many
participants
agreed
that
vaccination
should
be
linked
to
other
services
that
the
priority
groups
can
easily
access.
In
most
countries,
children
are
now
being
vaccinated
for
HBV
at
birth.
Participants
from
countries
who
do
not
implement
this
practice
questioned
why
their
countries
do
not
do
this
especially
given
the
low
price
of
the
HBV
vaccine.
They
suggested
that
vaccine
implementation
needs
to
come
from
the
national
level.
HBV
vaccination
for
PWID
-‐
Standard
vs.
rapid
regimen
Most
of
the
participants
did
not
know
that
there
is
a
rapid
regimen
for
HBV
vaccination.
Given
the
choice,
participants
prefer
a
shorter
regimen
that
is
not
spread
out
over
six
months.
All
participants,
who
responded
to
this
question,
stated
that
the
length
over
which
the
vaccine
is
administered
is
a
barrier
to
completing
the
vaccine
regimen.
HBV
vaccination
for
PWID:
Use
of
incentives
-‐
money
or
voucher
Although
a
few
participants
strongly
disagreed
with
the
use
of
incentives
to
encourage
HBV
vaccination,
the
majority
of
participants
were
in
favor.
However,
the
majority
stated
it
is
preferable
that
people
choose
to
be
vaccinated
because
they
want
to
take
care
of
their
health.
Provision
of
low
dead
space
syringes
Participants’
did
not
express
strong
feelings
for
or
against
low
dead
space
syringes
(LDSS).
Participants
were
most
interested
to
know
if
LDSS
syringes
could
come
in
different
sizes
and
with
removable
needles.
According
to
participants,
one
type
of
syringe
will
not
fit
all
needs.
Different
drugs
require
different
sized
syringes
and
not
all
PWID
prefer
the
same
type
of
syringe.
When
sharing
drugs,
it
is
important
for
many
to
be
able
to
remove
the
syringe
from
needle.
Psychosocial
interventions
It
was
generally
felt
by
most
participants
that
there
is
too
much
misinformation
about
viral
hepatitis
among
both
health
care
workers
and
PWID.
Respondents
were
generally
in
favor
of
psychosocial
interventions,
if
they
were
done
well.
PWID
need
more
information
on
prevention,
re-‐infection
and
treatment.
Participants
feel
it
is
extremely
important
that
accurate
information
is
shared
appropriately.
Other
participants
were
less
optimistic.
As
one
participant
said,
“PWID
don’t
need
to
be
”told”
about
behavior
change.
When
they
have
a
clean
needle,
they
use
a
new
needle.”
In
fact,
most
PWID
want
to
have
a
new
needle
and
use
their
own
needle.
They
prefer
not
to
share.
It
is
not
like
a
chillum
where
sharing
implies
something
brotherly.”
Many
respondents
stated
that
psychosocial
interventions
should
not
be
provided
at
needle
and
syringe
programs.
The
general
feeling
is
that
when
respondents
attend
NSPs,
the
goal
is
to
get
new
needles
and
leave,
not
linger
and
receive
additional
services.
Participants
did
not
specify
a
setting
that
would
be
better
suited
for
receiving
psychosocial
interventions.
As
expressed
for
other
8. 8
interventions,
psychosocial
interventions
also
need
to
be
done
in
a
non-‐discriminatory
way
by
people
with
whom
PWID
are
comfortable.
Peer
based
interventions
As
stated
by
one
participant,
“Peers
are
defined
as
a
person
who
has
a
connection
with
the
community
and
are
accepted
by
drug
users.”
The
overwhelming
majority
of
participants
stated
strongly
that
peer-‐based
interventions
are
key
in
providing
services,
especially
to
PWID.
Respondents
said
that
having
other
peers
deliver
services
improves
the
atmosphere
of
service
delivery
because
peers,
generally,
do
not
discriminate
towards
other
peers,
which
contributes
greatly
to
their
acceptance
by
and
success
with
PWID.
7.
Treatment
of
Viral
Hepatitis
Over
half
of
those
with
HCV
have
been
treated
for
their
HCV.
Those
who
originally
had
genotypes
3
and
4
all
successfully
cleared
their
HCV
with
treatment.
Among
those
who
had
genotype
1,
only
half
successfully
cleared
their
HCV
with
treatment.
Reported
side
effects
for
those
who
underwent
treatment
seemed
to
vary
in
severity
by
genotype.
Those
with
genotype
1
reported
more
adverse
side
effects
than
those
with
genotype
3.
All
participants
reported
that
HCV
treatment
is
available
in
their
countries.
However,
cost
and
accessibility
are
barriers.
Even
in
countries
where
HCV
treatment
is
provided
for
free
by
the
government,
not
all
people
do
or
are
willing
to
access
treatment.
Anecdotal
stories
from
participants
state
that
many
PWID
do
not
want
to
enter
the
health
system
due
to
stigma
felt
by
providers,
uneven
quality
of
services
and/or
fear
that
they
will
be
reported
to
the
police.
In
some
countries,
even
though
the
treatment
is
available,
it
is
extremely
difficult
to
see
a
doctor
who
specializes
in
HCV
and
can
prescribe
the
treatment.
Many
doctors
are
apprehensive
to
prescribe
HCV
treatment
due
to
all
the
side
effects
associated
with
interferon,
which
can
complicate
the
physicians’
management
of
the
patient.
Two
participants
stated
they
are
waiting
for
the
new
(and
supposedly
better)
HCV
treatment
to
become
available
before
initiating
treatment.
In
countries
where
HCV
treatment
is
not
provided
by
the
government,
the
cost
is
prohibitively
expensive
Should
WHO
develop
HCV
treatment
guidelines?
All
participants
strongly
agree
that
WHO
should
develop
HCV
treatment
guidelines.
Participants
say
this
would
be
“…a
powerful
policy
tool
and
blueprint
for
countries
to
use.”
In
addition,
due
to
fears
that
the
price
of
new
drugs
will
be
out
of
reach
for
those
in
low
and
middle
income
countries,
it
is
regarded
as
much
more
important
that
WHO
has
an
official
stance
on
HCV
treatment.
Co-‐infection
with
HIV
and
HBV/HCV
“Disease
progression
is
accelerated
for
both
diseases
when
co-‐infected.”
“Better
to
do
complete
HCV
treatment
before
initiating
ART.”
“Priority
for
ART
should
be
given
to
co-‐infected
people.”
At
the
advice
of
their
physicians,
two
of
the
participants,
both
from
Asia,
delayed
initiating
HIV
treatment
until
after
completing
their
HCV
treatment.
The
same
two
participants
were
also
advised
that
it
would
be
best
to
treat
their
HCV
when
their
HIV
viral
load
was
above
300.
9. 9
Of
the
participants
interviewed,
six
are
co-‐infected
with
HIV
and
HCV.
Although
he
never
failed
any
of
his
regimens,
one
participant
changed
his
ART
regimen
six
times
since
he
began
ART
due
to
complications
with
his
liver.
Another
participant
had
to
change
one
of
his
antiretroviral
(ARV)
medications
once
due
to
side
effects
and
a
third
participant
has
been
on
the
same
ART
regimen
since
2008.
Approximately
half
of
all
interviewed
had
relatively
low
general
knowledge
on
(treatment)
affecting
people
co-‐infected
with
HIV
and
HCV/HBV.
Those
with
low
knowledge
readily
admitted
that
they
need
more
information
on
the
issues
affecting
people
co-‐infected
with
HIV
and
viral
hepatitis.
Should
all
people
with
viral
hepatitis
initiate
ART
treatment
irrespective
of
their
HIV
CD4
count?
WHO
is
currently
reviewing
the
evidence
regarding
whether
all
people
with
viral
hepatitis
should
initiate
HIV
treatment
irrespective
of
CD4
count
Not
all
of
the
participants
have
enough
knowledge
to
answer
this
questions
authoritatively.
Those
participants
with
more
knowledge
feel
that,
in
general,
people
co-‐infected
with
(chronic)
HBV
and
HIV
should
start
initiate
ARTs
irrespective
of
their
CD-‐4
count
provided
they
are
on
a
therapy
that
includes
TDF
+
3TC/FTC.
One
participant
pointed
out
that
it
is
critical
to
test
people
for
HBV
before
initiating
ART
because
this
should
affect
the
ART
regimen
chosen.
For
HCV,
it
was
agreed
that
there
is
not
the
same
amount
of
evidence.
For
example,
some
participants
mentioned
that
it
is
not
preferable
to
use
nevirapine
or
zidovudine
as
treatment
for
people
co-‐infected
with
HCV
since
these
drugs
can
damage
the
mitochondria
and/or
interact
with
ribavirin
for
people
on
HCV
treatment.
However,
two
of
the
respondents
stated
that
they
are
on
ART
regimens
that
include
these
two
ARV
medications.
Conclusion
Seventeen
individuals
shared
very
personal
stories
for
the
purposes
of
these
interviews.
To
varying
degrees,
they
stated
they
are
hopeful
that
WHO
is
looking
at
the
prevention
of
viral
hepatitis
among
PWID.
10.
Annex
1.
Example
of
the
semi-‐structured
interview
guide
Viral Hepatitis: Semi-structured interview
M / F
Provider / community member / both
Age
Region
1. Qualitative interview introduction
Length: 45-60 minutes
Primary goal: To see things the way you see them… more like a conversation with a focus on your experience, your opinions and what you think or feel about the topics
covered
2. Verbal consent
Would you like to participate in this interview?
Verbal Consent was obtained from the study participant
Verbal Consent was NOT obtained from the study participant
3. Background Information
Overview:
Invite interviewee to briefly tell me about him/herself: General information about background… mostly about experiences and perspectives on issues surrounding HCV, HBV
and co-infection with HIV.
If the interviewee openly identifies as having been tested for viral hepatitis or has viral hepatitis, probe with the next questions.
Been through testing - serostatus not disclosed
Been through testing - serostatus positive
Been through testing - serostatus negative
4. Hepatitis testing experience
Can you tell me about your HBV / HCV testing experience?
• Where tested
• Was your experience with testing positive or negative?
o Why?
• If you have not been tested, than why not?
o What conditions/support would need to be in place to make you more inclined to test?
11. 11
Where should HBV/HCV testing be available?
• Linked to other services?
o Which ones: Vaccination? Treatment? Other?
In your opinion, who should be prioritized for HBV and HCV screening? Any particular groups?
What do you see as the benefit of knowing you have HBV? HCV?
• Change in behavior: Alcohol use? Sharing syringes? Other?
• Assess if people know that HCV/HBV diagnosis may impact HIV treatment regimen
• Better information at country level re: how many people have viral hepatitis (VH) (improve surveillance)
5. HBV Vaccination
Availability of HBV vaccine
• Have you been vaccinated?
o Why were you vaccinated?
§ Can you tell me about your experience? Positive or negative? Why?
o Where were you vaccinated
o Do you think people should get vaccinated?
§ If so, who in particular?
• If you have not been vaccinated, than why not?
o What conditions/support would need to be in place to make you more inclined to be vaccinated?
• Barriers to vaccination?
o Stigma? Health care workers attitude?
o What could improve setting for vaccination?
Setting
Where should vaccination take place?
• Linked to other services? Which ones: Testing? Treatment? Other?
Who should be prioritized for HBV vaccination?
What are your opinions/feelings about the HBV vaccine regimen?
• Length of time: the different regimens – standard vs. accelerated
• Ability to adhere to regimen
Opinion on use of incentives?
• What type?
o Probe for money and voucher
12. 12
In your opinion, who should be prioritized for HBV vaccination? Any particular groups?
6. Prevention – for PWID
What kinds of viral hepatitis prevention programs for PWID exist in your country?
Would you recommend other prevention programs?
• If yes, which ones?
What is your experience with prevention programs?
- Recipient? Provider?
- Which ones?
- Opinion?
Are you aware of the 9 prevention interventions that have been recommended by the UN (WHO/UNODC/UNAIDS) for HIV prevention?
1. Needle and syringe programmes (safe use and safe injecting) noting higher intensity coverage and paraphernalia needed and type of syringes
2. Opioid substitution therapy
3. HIV testing and counselling
4. HIV care and antiretroviral therapy for IDU
5. Prevention and treatment of STI
6. Condom programme
7. Outreach; information, education and communication for IDUs and their sexual partners
8. Hepatitis diagnosis, treatment and vaccination
9. Tuberculosis prevention, diagnosis and treatment
WHO is looking at additional prevention interventions in addition to the above 9. Examples include (see below)
1. Types of syringes
2. Psychosocial interventions provided by health services or peer driven to reduce injecting risk behaviour for HBV and HCV transmission.
3. HBV vaccination for PWID
Probe if they have heard of these interventions?
Their opinion / view?
Probe
1. There is insufficient evidence to recommend providing LDSS rather than HDSS in needle distribution programs at this stage.
o How do you react to this?
o Is this acceptable?
o What should be the message?
2. There is no evidence that psychosocial interventions reduce HCV/HBV transmission.
o How do you react to this?
o Is this acceptable?
o What should be the message?
3. HBV vaccination recommendations
13. 13
a. Short course schedule to maximize adherence combined with higher dose of vaccine for each injection to maximize immune response
b. Immediate on site availability of HBV vaccine at programs providing HBV vaccine or working closely with PWID populations.
c. Where appropriate and available, modest monetary incentives can be used to increase completion and received second short rates
o How do you react to this?
o Is this acceptable?
o What should be the message?
7. Treatment of Viral Hepatitis
Explore thoughts about viral hepatitis treatment Explain that these guidelines will not address treatment of VH alone. Can mention TDF based ART will treat HBV.
.
For each topic, differentiate between HBV and HCV treatment.
• If you have viral hepatitis, have you been treated?
o Why/ why not?
o What was your experience with it?
§ Side effects, adherence, other problems?
• Is treatment widely available in your country?
o Where?
o Quality of services?
o Accessibility, cost?
o Acceptability of service delivery?
Do you think WHO should develop HCV treatment guidelines…?
8. Co-infection with HIV and HBV/HCV – for all co-infected, not only PWID
Explain that this guidance in development will focus on the treatment of HIV in patients co-infected with HBV/HCV.
For ART treatment initiation and regimen, it is important to assess co-infection. -- Focus on questions that relate to this ---
Are you co-infected with HIV and HBV/HCV?
• Are you on ART?
• If yes: has having viral hepatitis affected your ART regimen
o If yes, how/why?
• Any additional side effects to ART regimen because of (or thought to be because of) co-infection?
Explore
• Knowledge of issues
• Knowledge of Treatment issues: has this affected your regimen?
14. 14
WHO is currently reviewing the evidence regarding whether all people with VH should initiate HIV treatment irrespective of CD4 count.
• HBV?
• HCV?
• Opinion on this?
• Is this realistic in your setting?
o Availability, access?
• What about in the context of low and middle-income countries?
o Effect on the clinical and eligibility criteria?
15.
Annex
2.
Results
of
Values
and
Preferences
survey
as
related
to
the
PICO
questions
from
the
guidelines
Question
1:
Should
a
rapid
HBV
vaccination
regimen
versus
a
standard
HBV
vaccination
regimen
be
used
among
PWID?
The
values
and
preferences
study
found
the
most
common
reported
barrier
to
HBV
vaccination
to
be
the
length
of
time
between
injections.
Approximately
half
of
all
participants
found
returning
three
times
over
the
course
of
6
months
to
be
a
barrier
fro
vaccine
completion.
Most
participants
were
not
aware
of
the
rapid
regimen
for
HBV
vaccination.
Given
the
choice,
participants
prefer
to
have
the
regimen
delivered
over
a
shorter
length
of
time.
Question
2:
Should
incentives
for
HBV
vaccination
completion
versus
no
incentives
be
used
among
PWID?
The
values
and
preference
survey
found
the
majority
of
respondents
in
favour
of
incentives
for
increasing
vaccination
rates,
although
some
were
strongly
against.
Vouchers
(for
food
or
transport)
were
raised
as
an
alternative
to
money
as
an
incentive.
The
majority
stated
it
was
preferable
that
people
choose
to
be
vaccinated
because
they
want
to
take
care
of
their
health.
Question
3:
Should
low
dead
space-‐syringes
versus
high
dead
space
syringes
be
provided
to
PWID?
Participants’
did
not
express
strong
feelings
for
or
against
LDSS.
Participants
were
most
interested
to
know
if
LDSS
syringes
could
come
in
different
sizes
and
with
removable
needles.
According
to
participants,
one
type
of
syringe
will
not
fit
all
needs.
Different
drugs
require
different
sized
syringes
and
not
all
PWID
prefer
the
same
type
of
syringe.
When
sharing
drugs,
it
can
be
important
to
be
able
to
remove
the
syringe
from
the
needle
Question
4:
Should
psychosocial
interventions
versus
no
psychosocial
interventions
be
used
among
PWID?
The
values
and
preferences
survey
found.
Respondents
were
generally
in
favor
of
psychosocial
interventions,
if
they
were
done
well.
PWID
need
more
information
on
prevention,
re-‐infection
and
treatment.
Participants
feel
it
is
extremely
important
that
accurate
information
is
shared
appropriately.
Participants
did
not
specify
a
setting
that
would
be
better
suited
for
receiving
psychosocial
interventions.
Question
5:
Should
peer
based
interventions
versus
no
peer
based
interventions
be
used
among
PWID?
The
overwhelming
majority
of
participants
stated
strongly
that
peer-‐based
interventions
are
key
in
providing
services,
especially
to
PWID.
As
stated
by
one
participant,
“Peers
are
defined
as
a
person
who
has
a
connection
with
the
community
and
are
accepted
by
drug
users.”
Respondents
said
that
having
other
peers
deliver
services
improves
the
atmosphere
of
service
delivery
because
peers,
generally,
do
not
discriminate
towards
other
peers,
which
contributes
greatly
to
their
acceptance
by
and
success
with
PWID.
