A Brief History of Drug User Self-Organisations

This technical briefing tells the story of a number of different groups and networks formed by people who use drugs to promote our health and defend our rights. A historical view is taken to help draw out common themes and create a framework for discussing and developing drug user organisations. Many drug user groups take on multiple functions and also as drug user groups mature and develop so they expand, develop and extend their remits.

Grassroots drug user organising

In January 1981, the Junkiebond was formed as an advocacy and activist drug user group based in Rotterdam in the Netherlands. As early as 1981, Junkiebond started an underground needle and syringe programme (NSP) with the aim of protecting people who inject drugs from hepatitis B. They took an activist approach campaigning for effective services for drug users, challenging discrimination and defending human rights.

The Junkiesbond closed in the late 1980s, but its influence remains strong with groups like Respect in the UK and Chemical Reaction in Edinburgh Scotland embracing the grassroots approach. These groups again operate primarily through peer networks, are often well integrated and engaged with drug supply (dealing) networks, and run a whole array of mutual aid functions. These can include advocacy with drug treatment providers, peer education, secondary or peer-led needle and syringe programmes, legal advocacy and consumer advocacy with local drug suppliers.

Such grassroots groups are very reactive in nature and respond when issues arise within illicit drug scenes. For example, Chemical Reaction was actively involved in investigating and developing a response to the first outbreak of anthrax from contaminated heroin while Respect helped investigate and develop peer responses to the severe health problems associated with ketamine.

These examples illustrate the reactive, pragmatic and highly purposeful nature of the grassroots model of drug user organising. Members of the active drug scene are engaged, organised and mobilized through active drug user networks. It is notable that grassroots groups often have leaders who are more broadly involved in community activism, giving them the necessary skills set and confidence to compliment their access to their drug using network and knowledge of drugs and harm reduction. This allows grassroots groups to remain fiercely independent and grounded in active drug using networks while drawing in the required community assets to deliver on any task. These groups tend not to receive official funding or have paid staff.

Treatment Advocacy

Another early drug-user organization was the ‘Committee of Concerned Methadone Patients and Friends Inc.ʼ (CCMP), which was formed by patients on methadone maintenance therapy (MMT) in New York in 1973. CCMP's primary purpose was to address the misconceptions about MMT and to overcome the prejudice directed towards ‘methadone patients’. CCMP fought for wider availability of the treatment, empowerment of ‘methadone patients’, and elimination of discrimination against ‘methadone patients’ in health care, education, job market, housing and insurance.

The successor organisation to CCMP was the National Alliance of Methadone Advocates (NAMA), which came into being in 1988. This group is now called NAMA Recovery (National Association of Medically Assisted Recovery), reflecting its shifting ideology over time and the influence of the recovery movement in the US. Other drug user groups campaigning or advocating for Opioid Substitution Therapy (OST) also champion the rights of clients seeking to secure their right to self-determination, choice and respect, whether from a community doctor or a specialist OST service. This function can either be held within a dedicated treatment advocacy organisation, such as the Methadone Alliance that existed in the UK from 1999 to 2013, or within a drug user group with a broader remit, such as the Danish drug user group BrugerForeningen. Forming advocacy networks with progressive prescribing doctors is also a strategic and common organising model in treatment advocacy. BrugerForeningen’s highly regarded annual award for friend of the drug using community speaks to the participatory and collaborative style of treatment advocacy while the hard hitting advocacy of the Methadone Alliance shifted treatment practice and championed quality.

In many settings, OST continues to be delivered in highly medicalised and restrictive settings and OST clients’ ability to work or function freely is often severely restricted. This pattern is particularly common in Eastern Europe and Central Asia given the history of the highly medicalised Soviet system. Ukraine has seen the development of a particularly strong OST network. Association ZPT, and organizations focused around OST clients remains the most prominent model of organising within the Eurasian region.

UNODC’s World Drugs Report confirms that about 10% of people who use drugs experience problems with their drug use. This population has the right to access drug treatment that is neither cruel nor degrading. Embracing the identity of a patient rather than a criminal is understandable in settings with high levels of discrimination and criminalisation. However, there are also concerns about drug users being ‘pathologised’ – the patient identity for some carries unwanted connotations of sickness and disease. This can create discussions about identity, tactics and terminology.

Public Health Mobilisation

The emergence of HIV and hepatitis among people who use drugs led to a growth in drug user organising, particularly among people who inject drugs. A good illustration of an organisation whose origins lie in the public health model is the ‘Australian IV and Illicit Drug Users League’ (AIVL), which was formed in the late 1980s and went on to become a formally constituted and incorporated association in 1992. Within its work, AIVL aims to address the full range of health, legal and social issues affecting people who use illicit drugs. AIVL, and its array of regional organizations run NSPs, undertake social marketing campaigns, produce drug user magazines, and deliver other peer-based programmes to support public health objectives. Within their activities, they have played a significant role in maintaining extremely low levels of HIV amongst people who inject drugs in Australia and championing the needs of those affected by viral hepatitis.

Drug user groups that reflect the public health model were also developed in Europe and North America as part of the response to HIV and its impact on people who inject drugs. In the US many drug activists mobilised through the underground NSP movement given the risks of standing publicly as people who used drugs. Notably, in recent years, with the changing legal environment in the USA, there has been a growth in more public expressions of drug user organising, particularly involved in NSPs, overdose prevention and advocacy – such as the San Francisco Users Union, the New England Users Union, and Lee’s Rig Hub.

Such models have now also been rolled out across Asia and Eastern Europe where HIV epidemics continue to devastate populations of people who use drugs. Groups of injectors and opiate users have also developed public health responses to other blood borne viruses, such as Hepatitis C, and have undertaken work on overdose prevention and management.

This public health approach has also been extended to work with different populations of stimulant users. In fact much innovation with regard to pill testing, crack and ice pipe distribution and safer using strategies have come from within the community of people who use stimulant drugs, as illustrated by groups such as the Crack Squad in the UK, the Ice Queens in Australia, and a large number of peer based dance safety organizations around the world.

A strong aspect of public health mobilization is peer based or community outreach. Drug user groups, like New Vector in Georgia, demonstrated their capacity to reach into the most repressed drug scenes where high levels of criminalization make drug users extremely cautious about approaching formal services. Having the status of a trusted peer ensures that services and peer education can be taken to those who would otherwise remain unreached.

Human Rights Activism

It is now acknowledged that rights and health of people who use drugs are inextricably connected. The United Nations Joint Programme on HIV/AIDS now frames the defence of rights and the challenging of stigma and discrimination as central to ending the global epidemic of HIV. A human rights model can operate at a number of different levels:

  • Teaching drug users about their legal rights on being stopped, searched and arrested.
  • Providing legal advice and advocacy within peer networks with links to free legal services.
  • Taking out test cases to challenge rights abuses by Governments or NGOs. Drug user activists linked to the Eurasian Network of People who Use Drugs are currently challenging the denial of access to OST by Russia through an appeal to the European Court of Human Rights, citing the denial of their right to health.
  • A rights-based approach also provides drug users with the chance to appeal for international solidarity. The need for this approach was highlighted during 2003, when the Thai Government sanctioned a ‘war on drugs’ which resulted in the deaths of 2,800 people in extra-judicial executions. The Thai Drug User Network showed immense courage to mobilise other nationally leading drug user groups to organise events in solidarity outside Thailand’s Embassies in their country.
  • A growing number of national drug user groups and activists have been trained to document and report human rights abuses against people who use drugs. This is an evolving area of work but one that importantly forces governments to account on the international stage for human rights abuses committed against people who use drugs.
  • Most recently the Indonesian national drug user network PKNI has played a key role in challenging the Indonesian President’s initiative to increase the rate of executions for people caught smuggling drugs. PKNI have taken a public stance within the national dialogue on the drugs death penalty and have challenged the UN at a country and global level to defend the right to life of people who use drugs.  The executions of people smuggling drugs in Indonesia and the campaign for their rights continues.

High-level advocacy

The last five years has seen drug user activists breakthrough onto the global and regional policy stage. The first two examples of this approach was the formation of the International Network of People who Use Drugs (INPUD) to represent the interests of people who use drugs on the world stage, and the Asian Network of People who Use Drugs (ANPUD) which was formed to give a regional advocacy voice to Asian people who use drugs. INPUD was formed in 2006 at the Vancouver Harm Reduction Conference where activists wrote and endorsed the Vancouver Declaration, which remains INPUD’s founding statement. Regional networks have now been developed in almost every part of the world and women in INPUD have also organised their own sub-network – the International Network of Women who Use Drugs (INWUD). These newer networks are still evolving and attracting funding. In East Africa drug users in the Kenya and Tanzanian Networks of People who Use Drugs have been involved in advocacy engagements with members of Parliament lobbying for OST and harm reduction.

These illustrations show that drug user advocates from the national, regional and global stage are now involved, representing the interests of people who use drugs and bearing witness to the consequences of bad drug policy and practice. As INPUD’s founding statement asserts: “Nothing About Us Without Us!”.

Women’s Organising

There is a longstanding and strengthening tradition of women drug users organising together. This dates back to initiatives supporting drug using mothers, as was pioneered by ACTIV in Canberra in a partnership between child and maternal health services. This also inspired the London based Ladybirds Project, which brought drug using mothers together to create art together and to use this art to promote the interests and rights of drug using mothers. This has important echoes in the work of ‪ACESO - International Organization for Women in Georgia that sees women who use drugs, and who have often served extremely long prison sentences, working together to produce art that is both empowering for the women involved and helps to raise funds for the drug user group. The Asteria Project in Kyrgyzstan is another network in Eurasia that has a special focus on the needs of women drug users who have been shown to face much higher levels of violence than their male peers, particularly from state actors such as the police.

This local level organising is also mirrored at the global level by Women in INPUD (INWUD), which brings together women within INPUD to focus specifically on the needs and advocacy agendas of women drug users.

Drug Law Reform Activism

Many different types of drug user groups include a focus on drug law reform, given the global criminalization of people who use drugs as proscribed by the common interpretation of the United Nations drug conventions. The legal environment faced by people who use drugs has been shown to fuel the HIV epidemic and reduce engagement with HIV testing or treatment services. As different countries around the world start to experiment and have positive results with more flexible interpretations of global drug control conventions, there is an increasing dialogue about drug law reform and the role that drug user activists play in this critical domain of work.

Drug user groups have played key roles in influencing drug policy, as was shown by Auto-Support usagers de drogues (ASUD) in France, who successfully stimulated a national debate about drug consumption rooms by announcing their plans to launch such a facility without Government permission. The resulting publicity led to the media visiting the ‘launch’ of ASUD’s facility, which allowed ASUD to highlight the positives of such a scheme and the remaining legal barriers, which were removed overtime. At a global level, INPUD established the Drug User Peace Initiative, including a demonstration outside the Commission on Narcotic Drugs in 2010, and have been engaged in advocacy within the United Nations around drug policy issues. As the discourse within the United Nations grows about the evident contradictions between the UN’s drug control conventions and its overriding obligations to protect human rights, it is critical that drug user advocates are able to operate within the UN’s civil society processes. 

Conclusion

People who use drugs are increasingly organising and mobilising together. In places, this process is happening with the support and facilitation of professional partners, while in other settings it is drug users ourselves who are helping to spread, technically support and share the importance of drug user organising.

This history is far from complete but it does try and set out the scope and opportunities of this work and most importantly pulls out some of the key themes to support those looking to promote and develop drug user organising. Coact are planning to launch this history as a living resource on our website and we invite drug user groups to share with us their histories and work so we can add and develop this evolving technical resource on drug user organising.  In the next edition, I will describe Coact’s new model for Starting Up A Drug User Group.

Mat Southwell and Lana Durjava, Coact

Mat Southwell has worked in the drugs and HIV fields as practitioner, manager and activist for 25 years, in England and worldwide. Mat was an early harm reduction worker in the UK and in 1991 founded the pioneering Healthy Options Team (HOT), a harm reduction agency that employed peer workers and used community mobilisation strategies with people who use drugs.

Lana is Coact’s technical writer. She has MA in Philosophy and is currently training as a psychologist. Her main fields of research are psychotraumatology, addiction studies and attachment theory. Her work background is in research and journalism.

Mat and Lana work for Coact which is a team of technical support experts who are both drug users and drugs professionals. This dual background helps Coact build bridges and facilitate learning engagements between the drug using community and professional stakeholders in the drugs response.

Тhe rest from the seventh edition of „Drugs - Policies and Practices" you can read HERE.

And the old numbers of the magzaine Drugs - Policies and Practices.