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

Wood et al. Journal of Urban Health (3);

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

Kerr et al., Lancet 2004  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

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