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Community-based and community-led harm reduction
In this video, Judy Chang from INPUD explains the differences between community-based and community-led harm reduction
When governments and non-government organizations do talk about and prioritise harm reduction and provision of services for people to use drugs, they often reduce harm reduction to a set of 10 interventions. For example, needle syringe programs, opioid agonist therapy, A.R.T. Hepatitis C treatment and naloxone for overdose prevention. Not only is this reductive of harm reduction, which we’ve seen above is more of an approach and organizing principle. But it also means that we only think of harm reduction as something that is done to or for people who use and inject drugs. However, harm reduction works best when it meaningfully involves people who use drugs and is used as a tool of empowerment for people who use drugs.
Harm reduction services and programmes have to be done with rather than for people that are most directly affected, in this case, people who use drugs, at the end of the day, it is common sense. You could build the best program in the world with highly qualified staff, well stocked with all the right testing and treatment technologies. And yet, if the services and medical tools aren’t deemed important or wanted, if programs aren’t designed in ways that attract people and keep them coming in, if peers aren’t aware of the services and if medical personnel and staff are known to be dismissive and or judgmental and discriminatory, people use drugs, won’t use the service or programme.
This is why community based and community led harm reduction is key to successful harm reduction, as it means that the insights, inputs and involvement of communities who are directly impacted by policies, programs and services are valued. It enables us as people who use drugs to take back power and demand that the nothing about us without us principle is realized, community based and community led harm reduction means that people who use drugs are not only clients or service users, but also service providers, advocates and managers. Its person centered, adaptable and innovative. It helps people who use drugs to overcome barriers to health care by improving a equality of care and equity of treatment.
Community based and led harm reduction is more than an intervention. It’s more broadly about social justice by firmly putting people usually seen as subjects only in the driver’s seat. It’s as much about human rights, power shifting and self-determination as it is about health care.
It’s crucial to note that community led organizations, that is those led by and for people who inject drugs are not the same as generic community based organizations In community led organizations, power and decision making, life in the hands of community members, that is, people who inject drugs Whereas in a CBO, which may be a local affiliate of a national or international NGO, power may reside only with some members of the community or more commonly with administrators who are not community members. It is the self determining and self-governing nature of an organization and its commitment to pursue the goals that its own members have agreed upon. That makes it a genuinely community led organizations.
Important decisions about the nature of time and place of services and programs are made by people who use drugs so that we are not just the foot soldiers delivering harm reduction services but are leading the response. Community led harm reduction empowers people who use drugs to design the delivery of harm reduction, including control over how and where the money is spent. As a social justice movement, it challenges the marginalization and stigmatization of people who use drugs.
Some of the earliest examples of community led and based harm reduction comes from the Netherlands and Australia in the 1970s and 80s. This work has been documented in the Taking Back What’s Ours docu series, collaboratively produced by INPUD and Rights Report Foundation. In the Netherlands, a group of people who use drugs have formed one of the first drug user led organizations known as junkiebond. The group managed to persuade the Dutch government to directly pay peers to distribute sterile needles and syringes to their peers to help prevent the transmission of HIV. And I said I need to have two professional field workers and it has to be drug users and you have to be paid. And they were really shocked.
Drug users paying. Maybe they will buy heroin for it. Yeah, it could be. But I don’t know what how people spend their money at the ministry. Similarly, in Australia, during the height of the HIV epidemic, it was people who use drugs who banded together and demanded that the government not only fund HIV prevention tools such as needle and syringe programmes and opioid agonist therapy, but also fund the foundational and organisational work of drug user led networks and collectives to continue protecting our communities.
The role of community mobilization and organizing has been recognized by UN entities, including the World Health Organization, as a critical enabler in the HIV response INPUD are the only global peak body representing people who use drugs with our membership made up of regional networks led by people who use drugs,
In 2017 we worked with UNODC, WHO? UNAIDS, UNDP, UNFPA, USAID and PEPFAR to produce the document implementing comprehensive HIV and HCV programmes with people who inject drugs, also known as the Injecting Drug Users Implementation Tool. This guidance is recognized by the UN system as normative guidance and gives practical advice to policymakers and programme managers on how to run effective community based harm reduction programmes.
This was a real highlight for INPUD Having our principles and our way of work endorsed by the UN gives political weight to the theory and practice of meaningful community involvement. Practical examples of what community led harm reduction can achieve can be found in INPUD’s report taking back What’s Ours. If we consider the ongoing overdose epidemic among people who inject drugs in Canada, it has always been the community who have taken action, often at political risk, to themselves. One example is in Vancouver, Canada, where peers were responsible for pushing for the founding of insite which was the very first government sanctioned supervised injection site in 2003.
Later, in 2017 in Moss Park, Toronto, activists set up an unsanctioned supervised drug consumption site based out of a tent and trailer in response to soaring overdose deaths in the face of inaction from authorities. If we turn our minds to covid-19, we can see again, as was the case when the HIV epidemic hit, that it is communities stepping up, particularly in the face of the failure of health and economic systems. People who use drugs mobilized rapidly to provide prevention, education, distributed life-saving services and food packages, and advocated for services to adapt to protect people and negotiated with police to prevent harassment and arrest of people who use drugs.
There are many, many things that need to change. First, we need to end the war on drugs and be working towards the full decriminalization of drug use. It’s not possible to reach all the people that need harm reduction services when in many contexts they are putting themselves at risk to do so. Political will and public support for harm reduction won’t broadly materialize as long as people who use drugs are seen as criminals. Secondly, the situation of funding for harm reduction overall, let alone for community led harm reduction programs, is incredibly dire. In fact, in many countries, there is a rollback as HIV falls off people’s radars.
When funding disappears, it is always community led programs that are cut first, meaning that it is service that lose person centered and empathetic treatment. Thirdly, within community based harm reduction programmes, peer educators and peer outreach workers are often undervalued, insecure and underpaid. This continuous a vicious cycle of stigma and discrimination that we face. We need a transformation in how many mainstream harm reduction programs treat peers. A great resource is the MDM video on peer workers, Peer experts, and need to be treated as such. Community empowerment needs to be seen as key to harm reduction.
We deserve respect and dignity because it is us that are the agents for change, both for our own individual health and the health and human rights of our communities. It is only by treating us as experts that we can together make a powerful and tangible difference to harm reduction and the world’s response to people who use drugs.
”..harm reduction works best when it meaningfully involves people who use drugs and is used as a tool of empowerment for people who use drugs.”.. In this session Judy will dive into the role of the community of people who use drugs, as leaders and active participants in harm reduction programs.
As you’ve heard in Week 1, harm reduction avoids labelling people who use drugs as victims, sick or criminals. Projecting “helplessness” prevents constructive thinking and, in some ways, denies respect of people’s existence, their individual choices, their humanity and the right to be full citizens.
“Community based and led harm reduction is more than an intervention. It’s more broadly about social justice by firmly putting people that are usually seen as subjects only; in the driver’s seat. It’s as much about human rights, power shifting and self-determination as it is about health care.”
Judy dives into the difference of “community based” and “community led” and highlights the commitments of the international stakeholders in this regard.
You have heard the term “nothing about us, without us” several times throughout the course. After watching this video, feel free to share with your fellow students how this concept is (or should be) made reality in your local context.
Optional
You will find a link to the first video of a series called: “taking back what’s ours”. It features the origins of community involvement of people who use drugs in different countries.
You will also find the guideline that Judy presents in this video; the Injecting Drug Users Implementation Tool. You can download it directly from the link below, or access a shorter briefing note, put together by INPUD, via this link.
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