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Involving People living with HIV/AIDS:
What does the Science Tell Us?
Mark Tyndall & Thomas Kerr
British Columbia Centre for Excellence in HIV/AIDS
Dept. of Medicine, University of British Columbia
Involving Communities…
The ethical imperative to involve people living
with HIV/AIDS in policy development and
program delivery is clear
There is also scientific evidence supporting the
principles outlined in GIPA
The Situation…
The policy response to HIV/AIDS among people who
inject drugs (IDU) is inadequate and often harmful

The most commonly applied approach to injection drug
use is to impose criminal sanctions

IDU are often driven into environments where they are
difficult to locate for the purpose of providing prevention
and risk reduction information and services

As a result, the most explosive HIV epidemics in the
world have occurred among IDU

Challenges…
Service providers often experience difficulties in reaching
and communicating with drug users and other marginalized
groups on their own turf

IDU are also known to avoid seeking services out of fear
that accessing them may alert police to their illegal activities

In response, IDU have become increasingly involved in
policy change and development, and program delivery

A growing body of research demonstrates the far reaching
effects of this form of involvement

The Benefits….

Increased acceptance

Improved reach & coverage
Able to focus on the most important issues
 Cost-effectiveness


Provision of opportunities for training and employment
Reduction of stigma
 Enhanced opportunities to translate policy into action

(Broadhead et al., 1995; Broadhead et al., 1998; Grund et al., 1993;
Power et al., 1995; Latkin, 1998; Cottler et al., 1998, Wood et al.,
2003; Kerr et al., 2006)
Improved Reach and Coverage
Table 1:
Logistic regression analysis* of factors associated
obtaining syringes from the VANDUneedle exchange.
with
Adjusted
Odds ratio
95 %
Confidence Interval
Frequent Cocaine Injection
( > Daily vs < Daily)
1.56
(1.00 – 2.44)
0.049
Inject in Public
(Yes versus No)
2.71
(1.62 – 4.53)
<0.001
Require Help Injecting
(Yes versus No)
2.13
(1.33 – 3.42)
0.002
Safety of Syringe Disposal*
(Safe versus Unsafe)
2.69
(1.38 – 5.21)
0.004
Variable
p-value
*model was also adjusted for age, HIV positivity, unstable housing, residence
in the HIV epicentre, involvement in the sex trade, frequency of heroin use,
reuse of syringes, and injecting alone.
Wood et al. Journal of Urban Health 2003 80(3); 455-464.
Improved Reach and Coverage
“There was a tent set up. And there was a needle exchange going on
there…And I thought ‘wow’, that's a lot better than running the van
around and around… it's just convenient. It's on the street, it's there.
Right where people score dope, like it’s not far to walk. And then I
found out it was called VANDU…It just feels more safe. It's nice to
have that convenience especially if you're IV drug using, cause
needles are a big issue. Especially when people are doing cocaine or
stuff like that. It's so easy to use another rig that's been used if you
can't get a syringe, and if you can't afford to buy one…Actually I used
to use the [fixed] needle exchange at DEYAS all the time. Now it's just
more convenient for me to use VANDU. They're just, they're there
more. They're where you need them…I find them where I need them.”
(Program Recipient)
Kerr et al., IJDP 2006
Improved Reach and Coverage
Reduced Stigma
“It brings together a collective experience and
wisdom, but also you begin to get a different feeling
about yourself. To become part of something for who
I am and not for who I am not. For who I am as an
addict, I’m poor, I’ve got hep C, I lived in wretched
housing and all this, and then someone says, ‘Yeah,
that all makes you a really valuable person. You have
a lot to contribute to try to help people and to save
other lives, and your experience can do that.’ Then I
get a different feeling about myself.”(Founder)
Kerr et al., IJDP 2006
 IDU have played a major role in improving policies
 The Thai Drug Users Network prompted the Global Fund to
provide $1.4 USD for harm reduction programs despite
significant government opposition
Kerr et al., Lancet 2004
Resisting Oppression
Resisting Oppression
Summary
 A growing body of research has demonstrated the
benefits of involving IDU in policy and program
development and delivery
 The involvement of IDU can improve the acceptance,
reach, and coverage of programs
 Involvement can also serve to reduce stigma and provide
opportunities for training and low-threshold employment
 IDU can also play an effective role in countering
oppressive policies
Moving Forward
The GIPA principles are supported by research evidence
– although more is needed

Governments and service providers should make efforts
to promote the involvement of people living with HIV/AIDS
in policy and program development and delivery

Involvement should be maximized by supporting the
involvement of PLWA in formal systems and by supporting
the development of independent PLWA groups


For many people, this is literally a life and death issue