Involving People living with HIV/AIDS: What does the Science Tell Us? Mark Tyndall & Thomas Kerr

Involving People living with HIV/AIDS:Involving People living with HIV/AIDS:What does the Science Tell Us? What does the Science Tell Us?

  Mark Tyndall & Thomas Kerr Mark Tyndall & Thomas Kerr

British Columbia Centre for Excellence in HIV/AIDSBritish Columbia Centre for Excellence in HIV/AIDSDept. of Medicine, University of British ColumbiaDept. of Medicine, University of British Columbia

Involving Communities…Involving Communities…

The ethical imperative to involve people living The ethical imperative to involve people living with HIV/AIDS in policy development and with HIV/AIDS in policy development and program delivery is clearprogram delivery is clear

There is also scientific evidence supporting the There is also scientific evidence supporting the principles outlined in GIPAprinciples outlined in GIPA

The Situation…The Situation…

The policy response to HIV/AIDS among people who The policy response to HIV/AIDS among people who inject drugs (IDU) is inadequate and often harmfulinject drugs (IDU) is inadequate and often harmful

The most commonly applied approach to injection drug The most commonly applied approach to injection drug use is to impose criminal sanctionsuse is to impose criminal sanctions

IDU are often driven into environments where they are IDU are often driven into environments where they are difficult to locate for the purpose of providing prevention difficult to locate for the purpose of providing prevention and risk reduction information and servicesand risk reduction information and services

As a result, the most explosive HIV epidemics in the As a result, the most explosive HIV epidemics in the world have occurred among IDUworld have occurred among IDU

Challenges…Challenges…

Service providers often experience difficulties in reaching Service providers often experience difficulties in reaching and communicating with drug users and other marginalized and communicating with drug users and other marginalized groups on their own turfgroups on their own turf

IDU are also known to avoid seeking services out of fear IDU are also known to avoid seeking services out of fear that accessing them may alert police to their illegal activitiesthat accessing them may alert police to their illegal activities

In response, IDU have become increasingly involved in In response, IDU have become increasingly involved in policy change and development, and program deliverypolicy change and development, and program delivery

A growing body of research demonstrates the far reaching A growing body of research demonstrates the far reaching effects of this form of involvementeffects of this form of involvement

The Benefits….The Benefits…. Increased acceptanceIncreased acceptance

Improved reach & coverageImproved reach & coverage

Able to focus on the most important issues Able to focus on the most important issues Cost-effectivenessCost-effectiveness

Provision of opportunities for training and employmentProvision of opportunities for training and employment

Reduction of stigmaReduction of stigma Enhanced opportunities to translate policy into actionEnhanced opportunities to translate policy into action

((Broadhead et al., 1995; Broadhead et al., 1998; Grund et al., 1993; 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., Power et al., 1995; Latkin, 1998; Cottler et al., 1998, Wood et al., 2003; Kerr et al., 2006)2003; Kerr et al., 2006)

Improved Reach and CoverageImproved Reach and Coverage

Table 1: Logistic regression analysis* of factors associated withobtaining syringes from the VANDU needle exchange.

Adjusted 95 %Variable Odds ratio Confidence Interval p-value

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

*model was also adjusted for age, HIV positivity, unstable housing, residencein 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.Wood et al. Journal of Urban Health 2003 80(3); 455-464.

Improved Reach and CoverageImproved Reach and Coverage

““There was a tent set up. And there was a needle exchange going onThere 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 vanthere…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.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 IRight 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 tofound 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 have that convenience especially if you're IV drug using, cause

needles are a big issue. Especially when people are doing cocaine orneedles 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 youstuff 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 usedcan'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 justto 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 theremore 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.”more. They're where you need them…I find them where I need them.”

(Program Recipient)(Program Recipient)

Kerr et al., IJDP 2006Kerr et al., IJDP 2006

Improved Reach and CoverageImproved Reach and Coverage

Reduced StigmaReduced Stigma

““It brings together a collective experience and It brings together a collective experience and wisdom, but also you begin to get a different feeling wisdom, but also you begin to get a different feeling about yourself. To become part of something for who about yourself. To become part of something for who I am and not for who I am not. For who I am as an 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 addict, I’m poor, I’ve got hep C, I lived in wretched housing and all this, and then someone says, ‘Yeah, housing and all this, and then someone says, ‘Yeah, that all makes you a really valuable person. You that all makes you a really valuable person. You have a lot to contribute to try to help people and to have a lot to contribute to try to help people and to save other lives, and your experience can do that.’ save other lives, and your experience can do that.’ Then I get a different feeling about myself.”(Founder)Then I get a different feeling about myself.”(Founder)

Kerr et al., IJDP 2006Kerr et al., IJDP 2006

Kerr et al., Lancet 2004Kerr et al., Lancet 2004

IDU have played a major role in improving policies IDU have played a major role in improving policies

The Thai Drug Users Network prompted the Global Fund to The Thai Drug Users Network prompted the Global Fund to provide $1.4 USD for harm reduction programs despite provide $1.4 USD for harm reduction programs despite significant government oppositionsignificant government opposition

Resisting OppressionResisting Oppression

Resisting OppressionResisting Oppression

SummarySummary

A growing body of research has demonstrated the A growing body of research has demonstrated the benefits of involving IDU in policy and program benefits of involving IDU in policy and program development and deliverydevelopment and delivery

The involvement of IDU can improve the acceptance, The involvement of IDU can improve the acceptance, reach, and coverage of programsreach, and coverage of programs

Involvement can also serve to reduce stigma and provide Involvement can also serve to reduce stigma and provide opportunities for training and low-threshold employmentopportunities for training and low-threshold employment

IDU can also play an effective role in countering IDU can also play an effective role in countering oppressive policiesoppressive policies

Moving ForwardMoving Forward

The GIPA principles are supported by research The GIPA principles are supported by research evidence – although more is neededevidence – although more is needed

Governments and service providers should make efforts Governments and service providers should make efforts to promote the involvement of people living with HIV/AIDS to promote the involvement of people living with HIV/AIDS in policy and program development and deliveryin policy and program development and delivery

Involvement should be maximized by supporting the Involvement should be maximized by supporting the involvement of PLWA in formal systems and by supporting involvement of PLWA in formal systems and by supporting the development of independent PLWA groupsthe development of independent PLWA groups

For many people, this is literally a life and death issueFor many people, this is literally a life and death issue