“We’re coming in with love, with compassion, with kindness”: The importance of peer-led advocacy in South Africa
"The change happens during tea while outside having a smoke and the deputy ministers ask for a lighter and that's where you start chatting”. Source: June Muks
Around the world, drug prohibitionist and its consequent stigma limit the autonomy and protections for people who use drugs. The World Drug Report 2022 estimates that there are 11.2 million people across the world injecting drugs, often unable to access clean injecting equipment. The lack of drug regulation means governments are responsible for exacerbating drug-related harms, and chronically under-fund harm reduction interventions. For meaningful harm reduction and decriminalisation to happen, governments need to engage with people who use drugs to see the harmful reality that prohibition creates, and ensure that future solutions are co-created with those most affected by criminalisation.
In South Africa, the exact number of drug overdose deaths remain unknown, with both fatal and non-fatal opioid overdoses still occurring amongst populations of people who use drugs and particularly affects people living on the street who inject drugs. Drug-related harms are also exacerbated by needle sharing amongst people who inject drugs, increasing the risk of blood-borne virus (BBV) transmission. A 2019 South African study showed a 43% prevalence of HCV amongst a group of respondents who injected drugs, highlighting the lack of research done into this population.
Peer-led organisations play a key role in reaching marginalised drug-using populations to ensure that even the most isolated groups are supported when and if needed. However, peer-led outreach programmes are not just about providing clean injection equipment or harm reduction advice; they’re about connecting with individuals on a personal level, as well as treating people with compassion and respect.
TalkingDrugs spoke with Angela McBride, the Executive Director of the South African Network of People Who Use Drugs (SANPUD) to discuss the importance of work done by community-led organisations. Organisations like SANPUD are peer-led and help coordinate the work of grassroot organisations providing harm reduction to PWUD and promote advocacy campaigns across South Africa:
“What we do is give a lot of technical assistance around community organisations. So we'll usually put out calls for proposals for peer led advocacy campaigns…for example, one is the peer educators in the Cape Town organisation informal network…They're hosting a harm reduction, [Information, Education and Communication] sharing activity here in Cape Town. So we act as the facilitator for this. It also kind of gives us a bit of autonomy, but most importantly it gives freedom and autonomy to the networks that we're engaging with.”
The work these community organisations create is amplified by SANPUD’s connections with several government departments, particularly the National Department for Social Development and the National Department of Health. For an organisation like SANPUD, regular engagement with government officials makes a huge difference to the presence and visibility of peer-led organisations. It also means that SANPUD is invited back into policy-making spaces to represent the interests of people who use drugs:
“We all spoke about what the national drug master plan should look like, how decriminalisation should be in there, how peer led activities should be in there. So we're being invited into spaces and into rooms where people are still a bit iffy. But because of the good word we get from other government agencies, they let us in.”
So how do organisations like SANPUD achieve progress when even providing clear evidence isn't enough to persuade policy makers? Interestingly, forming connections during the seemingly mundane parts of the day proved to be very valuable. According to Angela, it’s the “human interaction’’ that stimulates an understanding between two groups that don't necessarily see or interact with the people who are affected by their decisions:
“The change happens during lunch. The change happens during tea while outside having a smoke and the deputy ministers ask for a lighter and that's where you start chatting”.
Ensuring peers participate at the political level, and getting decisionmakers to meet with people who use drugs, is an important step in breaking down the barriers created through stigma and by prohibitionist policies that have isolated them from political participation, neglecting their role in conversations about health care and human rights. SANPUD’s work and other peer-led organisations are guided by the harm reduction saying: “Nothing about us, without us”.
The Impact of Peer Workers
Although cannabis was legalised in South Africa in 2018, the continued criminalisation of other drugs perpetuates significant harms to people using them. But, by involving peers at every stage of the work that goes on to dismantle the policies dictating the control and legality of drugs, their increased visibility beyond cannabis can help lead to de-stigmatisation and better working rights for peer-workers.
SANPUD’s work is beginning a long process to formally integrate peers in the field of harm reduction, ensuring they’re paid fairly for their work. As Angela emphasised, this needs to be implemented from the very start of devising and implementing harm reduction strategies:
“[Harm reduction peers] should be getting comfortable after two years and then moving higher up… into positions of finance, management, coordination, so that eventually after five years, it's not [run by] some multi million dollar organisation…but that it’s community organisations run by people who started the program, who started as peer educators, who started it as outreach workers, who are now five years later established strong enough that this big corporation just acts as a fiscal agent and that it's run by the community.”
Peer workers in South Africa and across the world are in the best and most informed position to make harm reduction decisions that will directly impact themselves and their communities. Without listening to people who use drugs, harm reduction strategies fail to understand what's working and what isn't. Angela also notes how it's not just the fact that people have used drugs that makes peer involvement so important, but that they generally understand the process and struggles of having to access healthcare while managing other costs of living:
“We understand the hustle. We understand you gotta get money, that you can't spend four, five hours waiting for your [antiretrovirals]…the [Opioid Substitution Therapy] hours are bonkers. How are you supposed to juggle that and the job and/or even looking for a job?”
There are many other peer-led organisations working in South Africa providing crucial harm reduction services to people who use drugs. HarmLess offers a range of services in Pretoria, particularly on reducing HIV transmission and related harms. They also offer needle and syringe distribution, sexual health advice, referral for antiretroviral therapy, as well as screening for Hepatitis B and C. Beyond these practical and life-saving services, HarmLess also organises peer educators to go out into communities and offer advice and information about available clinical care, without forcing abstinence-based treatment on people.
Koketso Mokubane, another voice from SANPUD, discussed his experience with HarmLess and his subsequent treatment for HCV at the International Network on Health and Hepatitis in Substance Users (INSHU) conference in October of this year. Having peers like Koketso and Angela present at these events is crucial in engaging the community with policy-makers and academics doing research on issues related to HCV and injecting drug use. Recognising people’s contributions to research is, as Angela summarises, about “giving [people who use drugs] a platform to be open and honest so that when they come home they're comfortable and they feel strong in themselves.”
Although governments must be held responsible for the harm people who use drugs experience as a consequence of prohibition policies, they must also be encouraged to engage directly with peer-led groups that are working tirelessly everyday, doing the groundwork to protect and save the lives of the most vulnerable people using drugs. By granting access to spaces where key decisions are made, organisations like SANPUD are having an influential role over decisions that directly affect them and are working to increase the visibility and representation of all people who use drugs.