HIT Hot Topics came back stronger than ever with a message of solidarity on peer-led outreach and a call to redouble action on drug-related deaths and ill health. DDN reports, photography by nigelbrunsdon.com
The stage was set for the first Hit Hot Topics conference for three years – and the tenth anniversary event. Pat O’Hare held up a ‘chill out’ leaflet from 30 years ago and recalled how HIT’s advice on taking ecstasy ‘caused a lot of fuss’. Times had changed but the challenges around harm reduction were no less significant. Coming together as a community was so important, said chair Niamh Eastwood of Release, because ‘it provides us with resilience’.
Colleen Daniels, public health lead at Harm Reduction International (HRI), set the scene by drawing on the Global state of harm reduction report. The last two years had seen a slight increase in uptake of harm reduction interventions, she said. There had been a decrease in injecting but more people taking drugs overall, and both the COVID pandemic and the Ukraine war had had a significant impact on harm reduction services – their availability, accessibility and quality.
People of colour, women, LGBTQI+, migrants and refugees faced additional barriers and it had become obvious that the ‘war on drugs has worked as a means of racial control’.
‘Massive Gaps’
There were also ‘massive gaps’ in prison harm reduction, and barriers to effective therapies such as hepatitis C medication, which was ‘extraordinarily expensive’ in some countries. Naloxone, ‘one of the most cost-effective interventions in public health’, was still not enough of a priority in tackling the ‘massive issue’ of overdose.
The data on mortality and morbidity showed that funding for harm reduction was only 5 per cent of what was needed in low- and middle-income countries. It was a situation affected by an ‘antiquated colonial top-down approach’, she said.
‘We have to look back to look forward,’ said Peter Furlong from Change Grow Live, who spoke from long-standing personal experience of pioneering harm reduction. ‘The new drug strategy says we’ll have world class treatment system – but what’s happened to the evidence?’ he asked. We’d lost the balance of harm reduction, treatment and recovery and the sharp increase in drug-related deaths ‘comes back to abandoning harm reduction’.
The purity of drugs had increased, cocaine-related deaths had risen significantly, and Dame Carol Black’s review showed that ‘money alone will not fix this’. ‘We have to redesign services to make them more attractive, involving people who use drugs,’ he said. ‘We need to make treatment easier to access.’
Tackling Exclusion
The need to tackle exclusion became clearer as the day went on. Jesse Bernard, a writer, DJ, researcher and filmmaker talked about three events that had shaped his own experience – being excluded from school, censorship of his music (drill, a subgenre of rap), and policing related to drugs.
He learned the hard way that people of colour were treated differently when he was suspended from school, but ‘nothing happened to the other [white] kid’. There were ‘school to prison pipelines – if you’re kicked out of school, you’re more likely to end up in prison’.
Censorship of black music and criminalisation of artists had ‘always been there’, from jazz in the 1910s onwards. Musicians had endured all kinds of suppression including broadcasting bans, shows being cancelled and being forbidden to record. Artists had evaded censorship by inventing new words and slang, which were shared rapidly online.
Mackayla Forde, a poet and academic known as Red Medusa, took up the narrative. Black people had been subjected to violence, lies – and to disproportionate stop and search.
Did people who made global drug policy consider race? A search of key words in 41 documents suggested they didn’t. Words and terms such as race, racism, racist, and racial injustice didn’t feature. ‘Our story has not been included in the literature,’ she said.
Dynamic peer networks were helping to rewrite the narrative. Phoenix – aka Mohawk, a ‘rebel educationist’ – travelled to parties around California with information and a ‘pharmacopeia to help hydrate people and help them think about harm reduction’. From being a ‘raver, engaged in a lot of drug use, getting whatever I could to enhance my experiences’, Mohawk rose to the challenge of outwitting the NYPD to distribute water, evading arrest, and – with the aid of a borrowed spectrometer – running a drug-checking lab from an apartment living room, ‘Ubering samples back and forth from a party to give people the information.’
The need for this intervention was acute, particularly with such high risks from a tiny amount of fentanyl. ‘I feel I have to work outside of an institutional context,’ said Mohawk. ‘There are a lot of people like me, low income, people of colour, at very great risk.’
Sharing Information
Karin Silenzi de Stagni had had similar experience of needing to find people and intervene at the right time. As part of a small volunteer-run charity called Psycare UK, she shared information – at parties, schools, music events, festivals – wherever people might come into contact with recreational drugs. ‘Young people taking drugs is part of human nature – it’s a natural thing to do, to discover, to know,’ she said. ‘So we try to take the stigma out and create bridges with health services. And because we are peers and not in uniform, we are approachable.’
Prohibition led to lack of information and all kinds of risks – adulteration and misidentification of drugs, dosing errors, adverse interactions from polydrug use, and effects of pre-existing medical conditions. Added to festival conditions – lack of sleep, sensory stimulation, lots of people, bad weather – psychedelic drugs could magnify the mindset and setting and lead to symptoms that appeared to be common with psychiatric illnesses. Psycare took ‘a non-conventional approach without medication and without burden on the NHS’ to help the person understand and integrate their experience, and tried to work with them afterwards. ‘We’re non-judgemental and listening is key,’ she said. ‘We allow the process to unfold and let them acknowledge their capacity to treat themselves. It’s a mutual learning experience.’
Self esteem and respect
Using drugs for 42 years, 18 of them injecting, had informed Lee Hertel’s decision to create Lee’s Rig Hub in Minneapolis, ‘a space to drop in and hang out’, with access to syringes, HIV testing, information and the internet. Until then, ‘services were delivered in a very stigmatised setting, with people expected to stand outside in all weathers and temperatures,’ he said. His hub was a place for camaraderie, which made a ‘great difference to self-esteem and self-respect’. It also acknowledged that ‘people want to get high’ and got on with ‘meeting and educating more and more people’.
Haven Wheelock met her challenge while living and working in Portland, Oregon – ‘founded as a white supremacist state, with some of the highest rates of substance use and misuse in the country, where drug laws always disproportionately affect black people’. Her work at Outside In, helping to link marginalised and homeless people with health and wraparound services, made her realise the desperate need to increase care for people who use drugs.
With support from the Drug Policy Alliance, she became chief petitioner for decriminalising small amounts of all drugs. It resulted in a transfer of millions of dollars in tax from the legalised cannabis market to create a harm reduction programme across the state from naloxone rollout to distributing crack pipes. A peer-led council (‘over half of people on it have been incarcerated and there are no cops’) was deciding where the money goes and there had already been ‘great progress’ in distributing naloxone and crack pipes. The council’s work was not easy, as it was ‘a messy process – messy and passionate’ with untrained people, she says. ‘But we have a lot of passion and the potential is amazing.’
Distributing crack pipes was also a hot topic in the UK, as Dr Magdalena Harris of the London School of Hygiene and Tropical Medicine explained. The safe inhalation pipe provision (SIPP) project had been driven by the significant rise in crack use alongside neglect of the relevant harm reduction. There was ‘little incentive for people who use crack to go through the door of services’, she said.
Prohibition of crack pipes had led to an increase in pipe sharing and crack injecting, which were both associated with ‘a lot of health harms’. People were also resorting to making their own pipes, which might not be heat resistant, have sharp edges and result in vapour inhalation being overly hot – all significant issues ‘in relation to a vulnerable population’.
The project was working to try and change the law and had police and crime commissioner support, but she was feeling frustrated at the hurdles to get it off the ground. ‘Efforts have stalled – people are not certain about the legality,’ she said. ‘We have to demonstrate that it won’t cause harm, but we can’t do it as it’s against the law.’ The Ethics Committee was concerned it would cause undue harms to a vulnerable population, but as a qualitative researcher she was excited at being able to address people’s needs and urged anyone interested to get involved in the collaborative project.
Hep C Elimination
As a project with the full weight of UK government – and World Health Organization – support behind it, the goal of hepatitis C elimination by 2025 seemed to be within reach. But as Tracey Kemp, Change Grow Live’s harm reduction lead explained, much of the significant progress was down to working with invaluable Hepatitis C Trust peers, ‘a force to be reckoned with’ and part of ‘an army of us working together’ to test and treat.
Harm reduction pathways were ‘the golden thread’ in making testing and treatment accessible to all, and this meant ‘meeting people where they’re at,’ she said. ‘Gone are the days when you could only get treated in treatment centres. We’re rocking up in car parks and at people’s doors’ to make sure of not losing people who were not in structured treatment. Sustaining elimination would depend on having adequate harm reduction, including syringe provision, and collaboration and partnerships – including working with other providers to engage people in treatment.
Uncomfortable questions
With a clear evidence base for effectiveness, the project was meeting clearly defined goals. So hearing about Danny Ahmed’s experience with the diamorphine assisted treatment (DAT) programme in Middlesborough raised many uncomfortable questions. The programme, also known as heroin assisted treatment (HAT), had been celebrated as a highly successful intervention, but was being discontinued through lack of funding from the local authority.
As the programme’s clinical lead at Foundations, Ahmed had seen ‘huge levels of engagement – 97 per cent’ from the people involved. Middlesborough had the highest number of people using heroin in the country and with half of its wards deprived, there was ‘no better place to look at alternatives to traditional treatment models,’ he said. Patients were relatively young (an average age of 38-40) and had ‘medieval levels of life expectancy’ as well as being likely to have mental health issues and be impacted by early trauma. ‘It was obvious we needed to do something,’ he said.
Starting in October 2019 the programme operated for three years, using two rooms with injecting booths and offering wraparound support (DDN, November 2019, p5 and DDN November 2020, online news). Many individuals became completely abstinent from street heroin, and many reduced their use of alcohol and street tablets. Furthermore, he says, ‘the biggest outcomes were the connections, not related to drugs… there were vast increases in physical health, mental health and wellbeing. Staggering changes… people were able to get their own housing.’ There was also a 60 per cent reduction in crime.
At £16.50 per person per day, he was told that DAT was too expensive. But on what terms? Of those who didn’t take part in the programme, six died and 43 had custodial sentences. ‘We heard that the programme has failed,’ said Ahmed. ‘But it hasn’t. Commissioning has failed, the drug strategy has failed and people who use drugs have been failed.’
‘We hear that there’s no demand from treatment services for this treatment,’ added Niamh Eastwood. ‘We need to tell OHID that there is. Fifty per cent of people who are dying aren’t in treatment.’
Hearing throughout the day about such dynamic work to scale seemingly insurmountable challenges certainly demonstrated a harm reduction community ready to fight for its lives.