Drug User Organisations

INPUD is disappointed that, yet again, members of the drug using community and the organisations which represent people who use drugs have not been formally consulted on policy recommendations which directly concern them. We would re-state in the strongest possible terms that people who use drugs are part of the solution. To paraphrase the Foreword of the Chair of the Commission (Global Commission on Drug Policy), Fernando Henrique Cardoso, we too are driven by urgency.[1]

Drug user organisations have been in existence since the 1970s, when people who use drugs (PUD) in a few European countries began to organise around issues like drug treatment and drug policy. Junkiebonden in the Netherlands is generally recognised as the first drug user organisation. In Australia, drug users had begun to organise before anyone realised HIV might become a problem for PUD. However, it was the realisation that HIV might become an epidemic in the mid-1980s that galvanised many groups to become official entities, supported with small amounts of funding by state and eventually the federal government.

The NSW Users and AIDS Association in Sydney was the first registered drug user organisation in Australia. It was strongly involved in the first needle and syringe programs (NSP) in 1986-87 in Kings Cross, and has been involved in almost everything to do with drug users in NSW since. Some of the states followed, and the Australian Injecting and Illicit Drug Users League (first called the Australian IV League – or AIVL), came out of the state drug user organisations along with individuals who also wanted to have a voice at the federal level. AIVL operated in the first years on a voluntary basis until in 1993 it received core funding to go with the small activities that had been supported previously. AIVL, along with some of the Australian state drug user organisations, has continued to grow, providing leadership at the global level. The success of our organisations in Australia has been integral to proving drug users can run legitimate, high quality, ethical organisations with a unique area of expertise, not only in HIV and blood borne virus prevention, but also in understanding significant drug related issues at a level other organisations can’t.

Different countries have had variations in the way drug users have organised, but for the most part drug user organisations have evolved out of services for PUD in the HIV response. Some have started after methadone and buprenorphine have finally become available, while others came from services started by current illicit drug users. Around the world, PUD have found ways, both legal and illegal, to look after their friends, providing small services such as unofficial NSP outreach. After the services they provide are recognised, legitimised and eventually funded, the PUD have then worked to be able to provide everything they can think of that a drug user might need including HIV testing and treatment, NSP, peer education, methadone, referrals, family counselling, advocacy and more.

Most low and middle income countries have only had drug user organisations in the last ten years or less. There are still many countries in the world without an acknowledged drug user organisation, while others have many local drug user organisations along with a national level network providing coordination to the members at the local level. The levels of experience vary from place to place. As in other countries, some have had ups and downs, struggling with a variety of issues. These include the impacts of criminalisation, where PUD, even those working in necessary harm reduction organisations, are vulnerable to imprisonment and forced “rehabilitation” regardless of their level of drug dependence. Many PUD have become involved through the HIV response, and key leaders within organisations have been unable to pass on their knowledge before dying from HIV and hepatitis C related complications. Very few drug user organisations in low income countries have any core funding or support while others have managed to get support from their local governments, international donors and UN agencies.

In recent years, an international network, the International Network of People who Use Drugs (INPUD) has formed. The formation of INPUD encouraged PUD from a range of countries to form regional networks, such as the Asian Network of People who Use Drugs (ANPUD) and the Middle East and North African Network of People who Use Drugs (MENANPUD). Again, levels of experience, support and sustainability vary among these networks. Their members may be national networks of PUD, individual PUD or a mixture of both, and their methods of representing PUD in their region vary.

As the organisation recognised to represent PUD at the global level, INPUD has been able to find a place of influence in the HIV and hepatitis C response internationally. INPUD is working towards the next United Nations General Assembly Special Session (UNGASS) on drug policy, due to be held in New York in 2016. This will be the first time since 1988 that the UN and its member states will seriously consider how the world approaches drug policy. INPUD has also been involved in many international drug policy debates, HIV and hepatitis B and C related bodies, and has represented PUD at major conferences and events. It is managing a major funding grant at a time when funding is becoming more scarce, and is using the funding to increase the capacity of PUD in countries where there has been little support for them.

ANPUD has also been able to achieve a level of influence in the five years or so of its existence. It was formed from a series of meetings held during conferences, until it received funding through AIVL. From there, ANPUD was able to get more funding, and places in regional committees and events in Asia. ANPUD is also supporting the development of PUD networks in some Asian countries.

Although these networks have been formed for a few years, the level of difficulty in managing a relatively new type of organisation has been challenging, and each is still finding its feet. There are never enough resources to go around, some members have less resources and less experience than others. Language is a constant source of difficulty, as are political, social and cultural differences. It will take time, effort and resourcing for the networks to build themselves.

There will always be differences between all PUD organisations depending on the legal, health and social environments in which they exist. However, they are all based on a framework of human, health and social rights of PUD, as equal members of all communities. Drug user organisations and networks all over the world are committed to improving the lives of PUD through advocacy about things like changes to drug policy, reducing stigma and discrimination towards PUD, improvements in the quality of services and increased access to services. Despite the many serious challenges, they are all achieving positive changes in their communities.

[1] http://www.inpud.net/en/inpud-response-global-commission-drug-policy%E2%80%99s-taking-control-pathways-drug-policies-work