Substance Use & Misuse, 47:568–572, 2012Copyright C© 2011 Informa Healthcare USA, Inc.ISSN: 1082-6084 print / 1532-2491 onlineDOI: 10.3109/10826084.2011.629707

COMMENTARY

What We Do Not Know About Organizations of People Who Use Drugs

Samuel R. Friedman1, Eric Schneider2 and Carl Latkin3

1National Development and Research Institutes, Inc., New York, NY, USA; 2ACCES (ACtions pour la Citoyennete etl’Education a la Sante), Marseille, France; 3Johns Hopkins Bloomberg School of Public Health, Department of Health,Behavior and Society, and Department of Epidemiology, Baltimore, Maryland, USA

In this paper, we present some brief thoughts aboutdrug users’ organizations. After a brief discussion ofusers groups’ history, we suggest a number of issuesthat require further research.

Keywords drug users’ organizations, users’ groups, harmreduction, HIV/AIDS, hepatitis C, social movements

This paper presents a stocktaking about users groups’history and about our and others’ research on drug users’organizations. It focuses on organizations of users ofillegal heroin, other opiates, cocaine, amphetamines, andamphetamine-type stimulants (ATS). Such organizationshave become prominent parts of harm reduction effortssince the early 1980s. The first author has been writingabout this topic for more than 25 years (Friedman, 1996,1998b; Friedman et al., 1987a, 1992a, 1992b, 1992c,1995b; Friedman & Casriel, 1988; Friedman, de Jong, &Des Jarlais, 1988, 1990; Friedman, de Jong, & Wodak,1993; Friedman & Des Jarlais, 1987, 1992; Friedman,Des Jarlais, & Goldsmith, 1989b; Friedman, Des Jarlais,& Ward, 1994c; Friedman & Neaigus, 1997; Friedman,Neaigus, & Jose, 1998e; Friedman & O’Reilly, 1997;Friedman & Reid, 2002; Friedman, Sterk, Sufian, DesJarlais, & Stepherson, 1990a; Friedman, Sufian, Curtis,Neaigus, & Des Jarlais, 1991; Friedman, Wiebel, Jose,& Levin, 1993a; Friedman & Wypijewska 1995). (Somewritings on this topic have appeared in pamphlets or usernewsletters that may be hard to find.) We here present afew historical notes and suggest some research topics thatwould assist the efforts of users’ groups, harm reductionprograms, and researchers into HIV/AIDS, hepatitis C,and the lives of people who use drugs.

There is of course a wide variety of users’ groups. Mostare informal groups of friends and acquaintances that helpeach other to survive and to meet their needs on a daily

Support for this paper was provided by the US National Institute on Drug Abuse project P30 DA11041 (Center for Drug Use and HIV Research).Address correspondence to Dr. Sam Friedman, NDRI, IAR, 71 West 23d Street, 8th Floor, New York, NY 10010. E-mail: Friedman@ndri.org.

basis. These groups have to some extent been studied byboth qualitative and quantitative researchers, and are notthe focus of this paper (Bourgois, 1998; Friedman et al.,2007).

We focus instead on groups that are structured moreformally. They function as voluntary organizations. Someof them operate as membership-run organizations, butmany others have nonprofit organization structures with aBoard of Directors or Executive Committee, employees,and volunteers. Some operate locally, others nationally orinternationally.

BRIEF OVERVIEW OF USERS’ GROUPS’ HISTORY

Over the last quarter century and more, there have beenmany efforts by publicly “out” drug user activists to coor-dinate efforts on an international scale. I will review someof those with which I have been most familiar—but I warnthat my knowledge and involvement have been partial. (Inaddition, the fact that my files on users’ groups were de-stroyed in the World Trade Center in September 2001 hashindered my ability to write this section.)

There was an upsurge in group-formation and effortsto coordinate activities in Western Europe in the early1980s, led in many ways by the remarkable RotterdamJunkiebond (RJB) and its allies in the Netherlands. Thishas been described byWouter de Jong in his thesis (1987),which is unfortunately available only in Dutch (de Jong,1987). I described the RJB and its allies rather sketchilyin some of my earlier papers on users’ groups (Friedmanet al., 1988; Friedman & Casriel, 1988).

In the second half of the 1980s, and the early 1990s,drug user activists often held meetings at the Interna-tional AIDS Conferences. Many of these attendees wereactive in national AIDS organizations and nationally orlocally funded users’ groups. They succeeded in get-ting a number of speakers at these conferences, includ-ing John Mordaunt in the closing plenary of the Berlin

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WHAT WE DO NOT KNOW ABOUT ORGANIZATIONS OF PEOPLE WHO USE DRUGS 569

AIDS Conference in 1993. Mordaunt was one of theearliest British user activists living with HIV/AIDS. Hiswife, Andria Efthimiu-Mordaunt, was also active at thetime and has remained active ever since as well as be-coming a scholar of the movement (Efthimiou-Mordaunt,2004). Starting at about this same year, the annual meet-ings of the International Harm Reduction Association in-creasingly became important as an opportunity for useractivists to meet. These meetings led to the formationof the International Network of People who Use Drugs(INPUD) and then the International Network of Womenwho Use Drugs, as well as to regional networks like theAsian Network of People who Use Drugs (ANPUD; seehttp://www.anpud.info/ANPUD/History.html for a briefoverview of its history) that are loosely affiliated with IN-PUD.

Funding for user activists to attend such meetings hasalways been an issue. Many of the user activists are fi-nanced by the organization holding the conference to at-tend it. This gives this organization a degree of controlover which user activists attend, and how many attend. Itleads to some tension at times. This tension contributesto other points of friction between harm reduction groupsand users’ groups. Harm reduction internationally has of-ten been dominated by the “top-down” perspectives ofpublic health agencies or service organizations that seekto do things for people who use drugs rather than bya “bottom-up” perspective. User activists often interpretthis—perhaps correctly—as a tendency for harm reduc-tion groups to control what happens. These tensions aremoderated by the fact that users’ groups need allies andthat both user activists and harm reductionists share acommitment to harm reduction. Another important factorshaping these relationships is that by and large harm re-duction programs can only be successful to the extent thatpeople who use drugs accept their assistance—and users’groups have a lot of influence in some localities over theextent to which such cooperation takes place.

National networks or serious attempts to form themhave existed at one time or the other in the United States,Canada, France, Great Britain, and many other countries.Australia has had a government-funded group of organi-zations in each state for much of the time since the late1980s; these have been coordinated by the Australian In-travenous League (AIVL) in Canberra as the national peakorganization. The leaders of AIVL have also served as amajor resource for efforts to organize globally throughoutthis period.

Over the years, there have been a number of quitestrong organizations in various cities. These include,among others, the RJB, the New South Wales Users andAIDS Association (NUAA), the Vancouver Area Net-work of Drug Users (VANDU), Street Voice in Bal-timore, Chemical Reaction in Edinburgh, AutoSupportet reduction des risques parmi les Usagers de Drogues(ASUD) in France, and the Thai Drug Users Union (inBangkok). In addition, and often as the voice of one ormore users’ groups, there have been a number of strongusers’ newspapers (which increasingly are online publi-

cations). These have included Junkmail, the AIVL mag-azine, Black Poppy in Britain, User News in Sydney,the French ASUD Journal, and many others. These haveserved as ways for users’ groups to disseminate harm re-duction messages, as a tool for organizing users, and attimes as theoretical discussion bulletins.

SOME RESEARCH NEEDS

Although there have been some efforts by user activistsand others (such as myself) to document the activities andsocial functioning of users’ groups, much more is needed.These include:

1. Histories of users’ groups. We need overall analytichistories of the users’ movement, as well as historiesof regional, national, and local groups. Like all histo-ries, these will be shaped by the personal experiences(including drug use history) and the social and polit-ical perspectives of their authors. This is one reasonwhy we need a number of such studies, so that the di-verse perspectives can enter into fruitful debate witheach other.

2. Basic typologies and descriptions of users’ groupsshould be constructed. Two early papers by Fried-man and his colleagues included such materials, butthey fall far short of what is needed (Friedman et al.,1988; Friedman & Casriel, 1988). These descriptivematerials might cover topics like how the groups aregoverned, membership turnover, and boundaries ofmembership. In addition, they might take up what arethe major threats to user groups’ existence? What arethe roles of former users and what are the roles ofnonusers who support users, such as familymembers?As a concrete example of one way in which such re-search could focus, in France in 2005, some ASUDstructures were granted a sociomedical status. Thisled to their having secure budgets. There was and stillis debate as to how it was done, the purposes behindthis action and its consequences for harm reduction,users, and the organization’s essence as a users’ or-ganization. Comparative research on this and similarinstances of users’ groups becoming more institution-alized could help the users and others to understandthe impacts of such organizational changes.

3. What forms of users’ groups, and what activitiesby users’ groups, are most effective in reducingdrug-related harms in their local communities. Someof the papers in this issue of Substance Use andMisuse bear upon this issue, but none of them tackleit directly. It is likely that these answers may vary fordifferent harms. It will be difficult to design studiesof issues such as how variations in the numbers andenthusiasm of users who take part in the governanceof a users’ group are associated with reductionsin overdose, in HIV transmission, in hepatitis Ctransmission, in users’ hostilities with neighbors, orin medication adherence—but studies on these issueswould be very useful indeed. It might be somewhat

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570 S. R. FRIEDMAN ET AL.

easier to study how specific programs run by users’groups affect these outcomes.

4. People who use drugs routinely suffer the effects ofpolice anti-drug activities and of stigmatization, oflaws that deny full citizenship rights to those con-victed of drug use (as in France and theUnited States),and other forms of dignity-denial by relatives, neigh-bors, medical institutions, researchers, and other in-stitutions. Users’ groups often attempt to reduce theseharms. It would also be useful to have research con-ducted to describe and evaluate such efforts, andwhether and how these efforts are shaped by internal-ized stigma and/or by resentment over being stigma-tized.

5. Why do some users’ groups succeed in organizingmass bases of people who use drugs (wherebyhundreds of users take active part in their activities invarious ways—which does not just mean attendingtraining, but more active forms of involvement)whereas others either fail at their efforts to do thisor do not attempt it? How can groups change thisif they want to? To what extent is it a question ofleadership style or content? Of issues that arise thatform an initial or ongoing basis for users to organizearound? How do these issues vary across differ-ent social, political, socioeconomic, and culturalcontexts?

6. A related issue is that sometimes users’ group gothrough periods of internal factionalism over howto move ahead. Sometimes, these factional issuesinvolve questions about who is a “true user” and whois not. This question has taken the form on occasionof the relationship of these groups to organizationsof marijuana users; or of whether the main focusshould be on injection drug users versus smokers orsniffers; or whether the concentration should be onthe most marginalized and most impoverished usersas opposed to white middle class users. Other times,disputes arise out of personal ambitions and powerstruggles, and sometimes they arise over issues ofpolitical strategy. (These forms of factionalism takeplace in many other organizations too, of course.One issue is whether users’ groups differ in thesedynamics from other organizations seeking socialchange, whether as a result or correlate of their druguse or due to different ways in which stigma oroppression operates toward drug users as comparedto, for example, sexual or racial/ethnic minorities.)

7. How can users’ groups’ actions affect the willingnessof funders to provide them with money (and the lim-itations that funders put on the use of this money)?What obstacles have users’ groups faced from fun-ders, public authorities, or internally from their ownmembers when they have attempted to organize largenumbers of users?

8. What is the impact of users’ newsletters, list serves,communication through Skype and other similar tech-nologies, and websites on risk behaviors of peoplewho use drugs? On their efforts to help and support

each other on a daily basis? On the level of theoreti-cal sophistication users have in formulating organiza-tional policy and in conducting educational activitiesfor other users or for community groups? How do thevisual and other strategies of user activists’ websitesaffect their impacts?

9. What impacts do users’ groups have on drug-related policies of various kinds? Here, AndriaEfthimiou-Mordaunt’s thesis provides a good begin-ning, but much more is needed (Efthimiou-Mordaunt,2004).

10. Finally, we suggest that there are a number of criticalissues that users’ groups will have to contend withduring the next few years. To the extent that fundershave provided money to users’ groups because oftheir role in fighting HIV/AIDS, developing tenden-cies to remedicalize HIV/AIDS prevention and/or totreat it as a chronic disease may lead to reductions infunding and/or to pressures to redirect energies tomedicalized goals such as “Seek, test, treat, andretain” strategies. To the extent that the currentperiod of economic and environmental instability andrelated political and existential crises continue, theremay be increasing attempts to demonize drug usersto a larger extent as part of a divide-and-rule scape-goating strategy to head off rebellions (Friedman,1998a; Friedman et al., 2001; Samuel et al., 2001).Research on how users and users’ groups respond tothese challenges, and with what results, could be ofconsiderable value.

We need studies that use a variety of research ap-proaches to address these issues. These include socialhistories, oral histories, ethnographies, qualitative or-ganizational case and comparative studies, quantitativeevaluations, and much more. For some of these, the unitsof analysis might be the individual (as in biographies ofuser activists, or evaluations of program impact on users’behaviors and beliefs); for others the organization; for yetothers, the methods of comparative urban research couldbe applied (analogous to research by Barbara Tempalskiand others on which US metropolitan areas have syringeexchanges and what characteristics of these areas areassociated with syringe exchange presence or coverage(Cooper, Bossak, Tempalski, Des Jarlais, & Friedman,2009; Friedman et al., 2011; Tempalski, 2007, 2008;Tempalski et al., 2003; Tempalski, Cooper, Friedman,Des Jarlais, & Brady, 2008; Tempalski, Flom, et al., 2007;Tempalski, Friedman, Keem, Cooper, & Friedman, 2007;Tempalski & McQuie, 2009)); and for others, national orinternational contexts.

Declaration of Interest

The authors report no conflicts of interest. The authorsalone are responsible for the content and writing of thearticle.

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WHAT WE DO NOT KNOW ABOUT ORGANIZATIONS OF PEOPLE WHO USE DRUGS 571

THE AUTHORSSamuel R. Friedman,Ph.D., sociologist, is a SeniorResearch Fellow at the NationalDevelopment and ResearchInstitutes, Inc. (New York,USA) and the Director of theInterdisciplinary TheoreticalSynthesis Core at the Center forDrug Use and HIV Research. Dr.Friedman is an author of morethan 400 publications on HIV,STI, and drug use epidemiologyand prevention. He has both

studied drug users’ organizations since 1985 and has also workedclosely with drug user activists in their efforts to fight HIV/AIDS,hepatitis C, and other medical and social harms that drug usersencounter.

Eric Schneider is codirectorof the association ACCES,France. He was engaged sincethe late 1989, in HR, Care forPUDs, Activism and Advocacy.He is a Founder member andformer Chair of the UK NationalOutreach forum, 1991, FormerChair, of ASUD, Marseille,Former Chair of ASUD National(France), and Former Chair ofINPUD.

Carl Latkin Ph.D., is aProfessor at Johns HopkinsBloomberg School of PublicHealth, Department of Health,Behavior & Society. His workhas focused on the social andphysical context and well-being of drug users and othermarginalized populations anddeveloping intervention toenhance the role of drug usersin community-based healthpromotion.

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