- Email: [email protected]
Hepatitis C prevention and true harm reduction
International Journal of Drug Policy 18 (2007) 335–337
Commentary
Hepatitis C prevention and true harm reduction Annie Madden a,∗ , Walter Cavalieri b a
Australian Injecting and Illicit Drug Users’ League, Canberra, Australia b Canadian Harm Reduction Network, Canada
Received 29 May 2007; received in revised form 7 June 2007; accepted 18 June 2007
Hepatitis C is a global epidemic. The World Health Organization estimates the global prevalence of hepatitis C virus infection is 3% or 170 million people (WHO, 2000). The numbers of prisoners estimated to be people who inject or have injected illicit drugs exceeds 40% in many countries (Vumbaca, 2005). The lack of access to new injecting equipment in the majority of prisons results in prisons effectively acting as an incubator for the hepatitis C epidemic. Despite the growing evidence that hepatitis C is an urgent public health issue, few countries have developed strategic national responses to address the hepatitis C epidemics within their populations. Since people who inject or have injected illicit drugs are the main group infected in almost all local epidemics (Aceijas & Rhodes, 2007), hepatitis C responses, where they do exist, have largely focused on harm reduction. The inability of any country, even those with established national hepatitis C policies, to prevent large numbers of new infections, has led some to question the effectiveness of harm reduction in relation to hepatitis C prevention. Hagan (2007) questions whether we know how to effectively prevent hepatitis C infection among people who inject drugs, suggesting that harm reduction may not be an effective primary framework for this, a perspective also taken up by Mateu-Gelabert et al. (2007). Harm reduction, however, does not exist in isolation. It can work effectively only if it is genuinely supported by an enabling policy and legislative environment. The so-called ‘failure of harm reduction’ in relation to hepatitis C prevention may be more about the failure of government policy to allow ‘real’ and comprehensive harm reduction strategies to be implemented than it is about the failure of harm reduction strategies per se.
∗
Corresponding author. Tel.: +61 262791600; fax: +61 262791610. E-mail address: [email protected] (A. Madden).
0955-3959/$ – see front matter © 2007 Elsevier B.V. All rights reserved. doi:10.1016/j.drugpo.2007.06.007
Even in countries where harm reduction programmes such as needle and syringe programmes (NSP) exist, they are rarely funded or supported to provide the full range and amount of equipment necessary to support effective harm reduction. For example, good-practice hepatitis C prevention messages encourage people who inject drugs to use new equipment for every shot. But NSPs often do not provide enough equipment for individuals to put these messages into practice. This is demonstrated even further in the context of prisons, where governments routinely acknowledge the extent of injecting drug use, HIV and hepatitis C in prisons but, with few exceptions, refuse to provide people with access to new injecting equipment (Vumbaca, 2005). Systemic barriers will inevitably reduce the effectiveness and accessibility of any harm reduction programme. As long as people who use drugs are criminalized, marginalized, stigmatized and isolated by the existing system, hepatitis C prevention and harm reduction strategies will struggle to have maximum effectiveness. For example, we can provide people with access to new injecting equipment through NSPs; but, if people going to or from the NSP fear being questioned by police, they may choose not to access the programme. Likewise, programmes located in inhospitable settings, open at inconvenient times or located at a distance from areas of drug use will also struggle for effectiveness. Government legislative and policy frameworks toward people who use illicit drugs and towards hepatitis C not only affect the delivery of effective harm reduction services but also shape community attitudes and values regarding both the disease and those most affected by it. People who use drugs are already discriminated against, and those with hepatitis C are further stigmatized. This increases their marginalization and thus limits their capacity to engage proactively on health issues such as hepatitis C (ADBNSW, 2001). Stigma and discrimination are routine aspects of the daily lives of many people who use illicit drugs, resulting in poor
336
A. Madden, W. Cavalieri / International Journal of Drug Policy 18 (2007) 335–337
treatment, no treatment or abusive treatment at the hands of health, legal and social services. This has left many people understandably distrustful of the system and practitioners working within it and extremely reluctant to access services. Such stigmatization is encouraged by anti-user government policies and social structure. Hence, there is a need to move away from seeing stigmatization of people with hepatitis C as merely the view of some individual healthcare workers (Paterson, Backmund, Hirsch, & Yim, 2007) and to name it for what it is: something built into government policy. Too often the healthcare offered to people currently using illicit drugs comes with extremely moralistic and judgmental overtones. “You can access hepatitis C treatment if you stop using drugs.” “Drug users have brought hepatitis C on themselves.” “Drug addicts are not as deserving of healthcare and treatment as people who have contracted hepatitis C from other means.” People who use illicit drugs are part of society. They are not immune to this type of institutionalized marginalization and ‘message sending’. Over time they absorb and internalize these views, with serious consequences for their health and well-being. The role of internalized discrimination and self-stigma among people who use illicit drugs is important to understand. People who use illicit drugs are acutely aware of the pressures to be something other than what they are or to deny their past. It is one thing to be open about having used drugs in the past, it is quite another to talk about current drug use or to suggest that your experience of drug use was anything other than negative. Over the past 20 years, there has been a slow and steady development both of organizations run by and for people who use/have used illicit drugs and also of an international movement of drug-user activists (Friedman, de Jong, & Wodak, 1993). While there are well-organized and highly functional groups operating in some parts of Canada, most of Australia, some European countries and parts of the UK and Asia, many groups are composed of a handful of people often struggling against the odds to survive and have a voice in a hostile and unsupportive environment. Some drug user organizations are specifically challenging marginalising and discriminatory language such as: “drug addicts”, “drug addiction”, “junkies”, “drug abusers”, “clean”, “crack head”, “crack ho” (whore), etc. These wellentrenched terms are imbued with value judgments and serve to stereotype people who use illicit drugs as sick, dangerous and out of control. While simply changing language will not in itself eliminate decades of disrespect and stigmatization, language is central to changing the way people who use illicit drugs are viewed and treated in society. Many drug user organizations operate peer-based services which provide NSPs, health clinics, crack pipe distribution, peer education, overdose prevention and peer advocacy. These services are non-judgmental and provide a space where people can be honest about their drug use and issues associated with it, without having to appear ‘better or different than they are’. Furthermore, they are often the focal
point for human-rights-based activity and a locus where people who use drugs can coalesce to demand a place at the table regarding decisions which affect them, led by the motto “nothing about us without us” (Canadian HIV/AIDS Legal Network, 2005). Because peer-based approaches are likely to be nonjudgmental and supportive, participants tend to feel more comfortable and that they can trust both the situation and the ‘peer.’ Peers are also the best-placed people to engage other drug users on hepatitis C risk and prevention, since (unlike health workers - including most NSP workers), they are often present when people are injecting. As the ones ‘on the spot’, peers are well situated to observe how people actually use drugs and to educate them at a time and in a way that is appropriate for the context (AIVL, 2006). People who inject drugs are very effective when it comes to passing on information to their peers. The illicit drugs scene is based on the daily maintenance of extensive peer networks, information sharing, looking out for each other and helping each other to survive. The main challenge, however, is not in encouraging people to share information but, rather, in making sure the information in circulation is actually correct. This is why it is essential for peer-based groups to be funded to provide education, training and support for peer educators to ensure the people ‘on the spot’ have access to the best and most up-to-date knowledge and are able to pass on new information as well as challenge misinformation. In addition to supporting and training peer educators, it is important that hepatitis C peer education projects and harm reduction programmes are not forced to ‘pretend’ that they are focused on abstinence or on providing ‘pathways to drug treatment’ in order to receive funding. Harm reduction and peer education programmes must be able to be honest about their primary focus – preventing the spread of blood-borne viruses and other harms related to drug use and providing services to people who are currently using illicit drugs – without being accused of ‘promoting drug use’. We need to ensure that the language used and the types of programmes provided do not push away people who are actively using drugs or force them to change (or pretend to change) solely to secure important health services. Equally, people who use or have used illicit drugs need to ensure they do not perpetuate and support the ongoing marginalization and isolation of themselves or their peers by the way they describe themselves and each other. This is particularly important for people who are former or ex-drug users. While using language such as “staying clean,” “hitting rock-bottom” and “being in recovery” can be supportive and empowering in the context of programmes aimed at ceasing or reducing drug use, these same terms and the attitudes and values which undergird them can isolate and alienate people who are currently using and create a barrier to engagement and effective harm reduction. Interestingly, this brings us back to where we started this editorial. Rather than asking if harm reduction is failing people who use illicit drugs, we need to ask whether the system
A. Madden, W. Cavalieri / International Journal of Drug Policy 18 (2007) 335–337
(and that means all of us and all of our organizations, institutions and governments) has failed to create an environment where we can honestly and effectively work to assist people in reducing the harms which drug use (and drug laws as well) may be causing them. People who use drugs are not disempowered and disengaged because of harm reduction; they are marginalized by a discriminatory system that prevents them from engaging in healthy and protective behaviours. If we are serious about responding to the global hepatitis C epidemic, not only must we ensure that people who use or have used illicit drugs are not discriminated against as citizens, but we must also adopt language, attitudes, values, approaches and structures which help them to educate each other, support each other and speak for themselves. Recently an International Network of People Who Use Drugs (INPUD) has formed. One of its first acts was to develop a declaration on why such a network is needed. The opening paragraph of the Declaration states that: “We are people from around the world who use drugs. We are people who have been marginalized and discriminated against; we have been killed, harmed unnecessarily, put in jail, depicted as evil, and stereotyped as dangerous and disposable. Now it is time to raise our voices as citizens, establish our rights and reclaim the right to be our own spokespersons striving for self-representation and self-empowerment.” (INPUD, 2006) Supporting this Network and the principles enshrined in its Declaration is one way we can act to stanch the further growth of the Hepatitis C epidemic.
337
References Aceijas, C., & Rhodes, T. (2007). Global estimates of prevalence of HCV infection among injecting drug users. International Journal of Drug Policy, 18(5), 352–358. Anti-discrimination Board of NSW (ADBNSW). (2001). Report of the Enquiry into Hepatitis C Related Discrimination. Sydney, Australia. Australian Injecting & Illicit Drug Users League (AIVL). (2006). Peer Education Framework. Canberra, Australia. AIVL. p. ii. Canadian HIV/AIDS Legal Network. (2005). Nothing About us Without us: Greater, Meaningful Involvement of People Who Use Illegal Drugs, Canada. Friedman, S. R., de Jong, W., & Wodak, A. (1993). Community development as a response to HIV among drug injectors. AIDS, 7(Suppl. 1), S263–S269, 92/93–A Year in Review 1993. Hagan, H. (2007). HCV Synthesis Project: Preliminary analyses of HCV prevalence in relation to age and duration of injection. International Journal of Drug Policy, 18(5), 341–351. International Network of People Who Use Drugs. (2006). Why the world needs an international network of drug users activists who use drugs. Canada: Vancouver., available on http://www.aivl.org.au Mateu-Gelabert, P., et al. (2007). How can hepatitis C be prevented in the long-term? International Journal of Drug Policy, 18(5), 338– 340. Paterson, B. L., Backmund, M., Hirsch, G., & Yim, C. (2007). The depiction of stigmatization in research about hepatitis C. International Journal of Drug Policy, 18(5), 364–373. Vumbaca, G. (2005). International prisons the need for change. Of substance: National magazine on alcohol, no. 2 Tabacco and Other Drugs., pp. 10–11. World Health Organization. (2000). Hepatitis C Factsheet No 164 (updated Oct 2000). http://www.who.int/mediacentre/factsheets (accessed 3 Feb. 2006).
Commentary
Hepatitis C prevention and true harm reduction Annie Madden a,∗ , Walter Cavalieri b a
Australian Injecting and Illicit Drug Users’ League, Canberra, Australia b Canadian Harm Reduction Network, Canada
Received 29 May 2007; received in revised form 7 June 2007; accepted 18 June 2007
Hepatitis C is a global epidemic. The World Health Organization estimates the global prevalence of hepatitis C virus infection is 3% or 170 million people (WHO, 2000). The numbers of prisoners estimated to be people who inject or have injected illicit drugs exceeds 40% in many countries (Vumbaca, 2005). The lack of access to new injecting equipment in the majority of prisons results in prisons effectively acting as an incubator for the hepatitis C epidemic. Despite the growing evidence that hepatitis C is an urgent public health issue, few countries have developed strategic national responses to address the hepatitis C epidemics within their populations. Since people who inject or have injected illicit drugs are the main group infected in almost all local epidemics (Aceijas & Rhodes, 2007), hepatitis C responses, where they do exist, have largely focused on harm reduction. The inability of any country, even those with established national hepatitis C policies, to prevent large numbers of new infections, has led some to question the effectiveness of harm reduction in relation to hepatitis C prevention. Hagan (2007) questions whether we know how to effectively prevent hepatitis C infection among people who inject drugs, suggesting that harm reduction may not be an effective primary framework for this, a perspective also taken up by Mateu-Gelabert et al. (2007). Harm reduction, however, does not exist in isolation. It can work effectively only if it is genuinely supported by an enabling policy and legislative environment. The so-called ‘failure of harm reduction’ in relation to hepatitis C prevention may be more about the failure of government policy to allow ‘real’ and comprehensive harm reduction strategies to be implemented than it is about the failure of harm reduction strategies per se.
∗
Corresponding author. Tel.: +61 262791600; fax: +61 262791610. E-mail address: [email protected] (A. Madden).
0955-3959/$ – see front matter © 2007 Elsevier B.V. All rights reserved. doi:10.1016/j.drugpo.2007.06.007
Even in countries where harm reduction programmes such as needle and syringe programmes (NSP) exist, they are rarely funded or supported to provide the full range and amount of equipment necessary to support effective harm reduction. For example, good-practice hepatitis C prevention messages encourage people who inject drugs to use new equipment for every shot. But NSPs often do not provide enough equipment for individuals to put these messages into practice. This is demonstrated even further in the context of prisons, where governments routinely acknowledge the extent of injecting drug use, HIV and hepatitis C in prisons but, with few exceptions, refuse to provide people with access to new injecting equipment (Vumbaca, 2005). Systemic barriers will inevitably reduce the effectiveness and accessibility of any harm reduction programme. As long as people who use drugs are criminalized, marginalized, stigmatized and isolated by the existing system, hepatitis C prevention and harm reduction strategies will struggle to have maximum effectiveness. For example, we can provide people with access to new injecting equipment through NSPs; but, if people going to or from the NSP fear being questioned by police, they may choose not to access the programme. Likewise, programmes located in inhospitable settings, open at inconvenient times or located at a distance from areas of drug use will also struggle for effectiveness. Government legislative and policy frameworks toward people who use illicit drugs and towards hepatitis C not only affect the delivery of effective harm reduction services but also shape community attitudes and values regarding both the disease and those most affected by it. People who use drugs are already discriminated against, and those with hepatitis C are further stigmatized. This increases their marginalization and thus limits their capacity to engage proactively on health issues such as hepatitis C (ADBNSW, 2001). Stigma and discrimination are routine aspects of the daily lives of many people who use illicit drugs, resulting in poor
336
A. Madden, W. Cavalieri / International Journal of Drug Policy 18 (2007) 335–337
treatment, no treatment or abusive treatment at the hands of health, legal and social services. This has left many people understandably distrustful of the system and practitioners working within it and extremely reluctant to access services. Such stigmatization is encouraged by anti-user government policies and social structure. Hence, there is a need to move away from seeing stigmatization of people with hepatitis C as merely the view of some individual healthcare workers (Paterson, Backmund, Hirsch, & Yim, 2007) and to name it for what it is: something built into government policy. Too often the healthcare offered to people currently using illicit drugs comes with extremely moralistic and judgmental overtones. “You can access hepatitis C treatment if you stop using drugs.” “Drug users have brought hepatitis C on themselves.” “Drug addicts are not as deserving of healthcare and treatment as people who have contracted hepatitis C from other means.” People who use illicit drugs are part of society. They are not immune to this type of institutionalized marginalization and ‘message sending’. Over time they absorb and internalize these views, with serious consequences for their health and well-being. The role of internalized discrimination and self-stigma among people who use illicit drugs is important to understand. People who use illicit drugs are acutely aware of the pressures to be something other than what they are or to deny their past. It is one thing to be open about having used drugs in the past, it is quite another to talk about current drug use or to suggest that your experience of drug use was anything other than negative. Over the past 20 years, there has been a slow and steady development both of organizations run by and for people who use/have used illicit drugs and also of an international movement of drug-user activists (Friedman, de Jong, & Wodak, 1993). While there are well-organized and highly functional groups operating in some parts of Canada, most of Australia, some European countries and parts of the UK and Asia, many groups are composed of a handful of people often struggling against the odds to survive and have a voice in a hostile and unsupportive environment. Some drug user organizations are specifically challenging marginalising and discriminatory language such as: “drug addicts”, “drug addiction”, “junkies”, “drug abusers”, “clean”, “crack head”, “crack ho” (whore), etc. These wellentrenched terms are imbued with value judgments and serve to stereotype people who use illicit drugs as sick, dangerous and out of control. While simply changing language will not in itself eliminate decades of disrespect and stigmatization, language is central to changing the way people who use illicit drugs are viewed and treated in society. Many drug user organizations operate peer-based services which provide NSPs, health clinics, crack pipe distribution, peer education, overdose prevention and peer advocacy. These services are non-judgmental and provide a space where people can be honest about their drug use and issues associated with it, without having to appear ‘better or different than they are’. Furthermore, they are often the focal
point for human-rights-based activity and a locus where people who use drugs can coalesce to demand a place at the table regarding decisions which affect them, led by the motto “nothing about us without us” (Canadian HIV/AIDS Legal Network, 2005). Because peer-based approaches are likely to be nonjudgmental and supportive, participants tend to feel more comfortable and that they can trust both the situation and the ‘peer.’ Peers are also the best-placed people to engage other drug users on hepatitis C risk and prevention, since (unlike health workers - including most NSP workers), they are often present when people are injecting. As the ones ‘on the spot’, peers are well situated to observe how people actually use drugs and to educate them at a time and in a way that is appropriate for the context (AIVL, 2006). People who inject drugs are very effective when it comes to passing on information to their peers. The illicit drugs scene is based on the daily maintenance of extensive peer networks, information sharing, looking out for each other and helping each other to survive. The main challenge, however, is not in encouraging people to share information but, rather, in making sure the information in circulation is actually correct. This is why it is essential for peer-based groups to be funded to provide education, training and support for peer educators to ensure the people ‘on the spot’ have access to the best and most up-to-date knowledge and are able to pass on new information as well as challenge misinformation. In addition to supporting and training peer educators, it is important that hepatitis C peer education projects and harm reduction programmes are not forced to ‘pretend’ that they are focused on abstinence or on providing ‘pathways to drug treatment’ in order to receive funding. Harm reduction and peer education programmes must be able to be honest about their primary focus – preventing the spread of blood-borne viruses and other harms related to drug use and providing services to people who are currently using illicit drugs – without being accused of ‘promoting drug use’. We need to ensure that the language used and the types of programmes provided do not push away people who are actively using drugs or force them to change (or pretend to change) solely to secure important health services. Equally, people who use or have used illicit drugs need to ensure they do not perpetuate and support the ongoing marginalization and isolation of themselves or their peers by the way they describe themselves and each other. This is particularly important for people who are former or ex-drug users. While using language such as “staying clean,” “hitting rock-bottom” and “being in recovery” can be supportive and empowering in the context of programmes aimed at ceasing or reducing drug use, these same terms and the attitudes and values which undergird them can isolate and alienate people who are currently using and create a barrier to engagement and effective harm reduction. Interestingly, this brings us back to where we started this editorial. Rather than asking if harm reduction is failing people who use illicit drugs, we need to ask whether the system
A. Madden, W. Cavalieri / International Journal of Drug Policy 18 (2007) 335–337
(and that means all of us and all of our organizations, institutions and governments) has failed to create an environment where we can honestly and effectively work to assist people in reducing the harms which drug use (and drug laws as well) may be causing them. People who use drugs are not disempowered and disengaged because of harm reduction; they are marginalized by a discriminatory system that prevents them from engaging in healthy and protective behaviours. If we are serious about responding to the global hepatitis C epidemic, not only must we ensure that people who use or have used illicit drugs are not discriminated against as citizens, but we must also adopt language, attitudes, values, approaches and structures which help them to educate each other, support each other and speak for themselves. Recently an International Network of People Who Use Drugs (INPUD) has formed. One of its first acts was to develop a declaration on why such a network is needed. The opening paragraph of the Declaration states that: “We are people from around the world who use drugs. We are people who have been marginalized and discriminated against; we have been killed, harmed unnecessarily, put in jail, depicted as evil, and stereotyped as dangerous and disposable. Now it is time to raise our voices as citizens, establish our rights and reclaim the right to be our own spokespersons striving for self-representation and self-empowerment.” (INPUD, 2006) Supporting this Network and the principles enshrined in its Declaration is one way we can act to stanch the further growth of the Hepatitis C epidemic.
337
References Aceijas, C., & Rhodes, T. (2007). Global estimates of prevalence of HCV infection among injecting drug users. International Journal of Drug Policy, 18(5), 352–358. Anti-discrimination Board of NSW (ADBNSW). (2001). Report of the Enquiry into Hepatitis C Related Discrimination. Sydney, Australia. Australian Injecting & Illicit Drug Users League (AIVL). (2006). Peer Education Framework. Canberra, Australia. AIVL. p. ii. Canadian HIV/AIDS Legal Network. (2005). Nothing About us Without us: Greater, Meaningful Involvement of People Who Use Illegal Drugs, Canada. Friedman, S. R., de Jong, W., & Wodak, A. (1993). Community development as a response to HIV among drug injectors. AIDS, 7(Suppl. 1), S263–S269, 92/93–A Year in Review 1993. Hagan, H. (2007). HCV Synthesis Project: Preliminary analyses of HCV prevalence in relation to age and duration of injection. International Journal of Drug Policy, 18(5), 341–351. International Network of People Who Use Drugs. (2006). Why the world needs an international network of drug users activists who use drugs. Canada: Vancouver., available on http://www.aivl.org.au Mateu-Gelabert, P., et al. (2007). How can hepatitis C be prevented in the long-term? International Journal of Drug Policy, 18(5), 338– 340. Paterson, B. L., Backmund, M., Hirsch, G., & Yim, C. (2007). The depiction of stigmatization in research about hepatitis C. International Journal of Drug Policy, 18(5), 364–373. Vumbaca, G. (2005). International prisons the need for change. Of substance: National magazine on alcohol, no. 2 Tabacco and Other Drugs., pp. 10–11. World Health Organization. (2000). Hepatitis C Factsheet No 164 (updated Oct 2000). http://www.who.int/mediacentre/factsheets (accessed 3 Feb. 2006).