‘We now have three years to achieve our shared goal of elimination of hepatitis C as a public health issue in London,’ London Joint Working Group (LJWG) co-chair Dr Suman Verma told LJWG’s 2022 conference. Despite the challenges of COVID, there had been ‘incredible perseverance, partnership working and innovation’ during this time, she said.
‘I felt shock and fear, because there’s such a lot of stigma around hepatitis C,’ said Rory O’Donnell, who was recently diagnosed through a blood spot test at a drug service. ‘I wasn’t aware that I was at risk, even though I’d injected. And I never realised that it could be cured.’
He’d started treatment of one-tablet per day, but found he’d cleared the virus after just one month of the three-month treatment period and was now planning to work as a peer mentor.
People with lived experience were vital in persuading others to come forward, he stressed. ‘People would probably be a little bit more open knowing someone has used out there and contracted the virus, rather than someone who hasn’t. There’s a lot of fear attached to it, and a lot of people putting their heads in the sand.’
‘We’ve been through this terrible pandemic and when it started people said it would be a great leveller – but as ever, of course it was not,’ said senior advisor the mayor of London on health policy, Dr Tom Coffey. The fact that the poorest Londoners were most likely to get – and die from – COVID mirrored the situation with hep C. ‘A treatable condition, but again it affects the poorest – people in prison, people who are drug users, the homeless. But what gives me hope is our work with HIV,’ with very ambitious targets being met, he said. ‘What we’ve done with HIV, we can do with hep C. So it’s really important that we do outreach work to identify people like Rory who are unaware they have the virus.’
Pace of change
The pace of change had been extraordinary, and the headline was that fewer people were dying or getting cancer from hep C, said NHS England’s hepatitis C clinical lead, Professor Graham Foster. ‘Four or five years ago when I said we should go into drug services and actively treat people there was massive opposition to that. We were berated by colleagues for wasting NHS money on drug users, but now they’re all getting access to treatment. If you go into a drug service you will get tested and you will get treatment – that is transformative.’
The challenge, however, was to keep that going – which was not going to be easy. ‘You need people out on the streets, finding people, engaging them and getting them into treatment. But the funding for that will disappear in 18 months.’ HIV was a ‘poster child’, he said, ‘but why are we second fiddle? There’s more hepatitis C in London than HIV, so why isn’t it “Give the finger to HIV and hepatitis C?”’ There were also a number of hospitals that still weren’t engaged, he said, and where the numbers of people treated remained inadequate. ‘And we still haven’t got a community pharmacy programme. I’m going to call the mayor out, I’m afraid. We’ve heard a lot about some very good work in many areas but we haven’t seen any money for hep C. In 18 months NHS England will walk away, which is where we need the mayor to step up.’
What was needed was a mayoral post to coordinate the strategy and keep the elimination goals going, he stressed. ‘Given the large amount of money put into HIV I don’t think it’s unreasonable to ask for that. Look at the work being done – people are coming from primary care, from drug services, and we’re treating people in the most deprived areas. We’re getting to people that nobody else gets to, and we give them a hand up. We tell them that they’re not on the margins of society, and just because they use drugs it doesn’t mean we don’t care. We’ve got to think about how we maintain this as the NHS steps back.’
‘If we can do it with HIV we can do it with hep C,’ agreed senior project manager, HCV elimination specialised commissioning at NHS England, Specioza Nabiteeko. ‘We need to build on those pathways that already exist,’ and take an overall, genuinely holistic, BBV approach.
Every time someone offered a test, supported someone through the process or signed a prescription they were working towards elimination, said head of programme for HCV elimination, NHS England, Mark Gillyon-Powell. There had been a massive increase in testing in drug services and people accessing treatment since 2015, and a 37 per cent reduction in deaths. ‘So we’ve already met the WHO targets way early – but it’s not good enough, we need no one to be dying. We keep treating people so we’re emptying the bath, but until we switch off the taps of new people being infected we can’t get to the point of elimination.’
There was still a long way to go in preventing onward transmission and reinfection, he said, while in post-treatment more could be done in terms of offering dedicated support to those more prone to reinfection. ‘If we can identify what the risk factors are for reinfection in a much clearer way, how can we support people better? We need to optimise the support that’s available to enable them to protect themselves.’
‘We really need to think about which populations are at greatest risk of reinfection and think about how we might access them,’ agreed consultant epidemiologist and head of hepatitis C and BBVs at UKHSA, Dr Monica Desai. While there was new focus on harm reduction through the drug strategy, it was also crucial to make sure that investment continued and ‘we monitor needle and syringe provision to fully understand what coverage looks like and where we may have gaps.’
When it came to reinfections, it was essential to make sure harm reduction services were bolstered and that there was genuinely joined-up commissioning, said the Hepatitis C Trust’s director of community services, Stuart Smith. ‘You can’t have one body commissioning treatment and another commissioning harm reduction and preventing new infections.’
LJWG had just begun phase 2 of its work on developing a peer-based needle exchange for London (DDN, February, page 5), said LJWG coordinator Dee Cunniffe. ‘We’re looking at the phase 1 recommendations and seeing what a model to do that would look like. We’re doing a start-up – we’re not calling it a pilot because it really has to be long-term’. It would have peer leadership embedded, she stressed, and be fully replicable as a pan-London approach. ‘So any commissioners out there, come and speak to us now.’
‘For me, elimination is simple,’ said Foster. ‘It means you use drugs and you’re pretty sure you’re not going to catch hep C. And if you do catch it, you get it diagnosed and treated very quickly. High-risk people get tested when they go to their GP. That’s elimination. Once we’ve done that, we’ve cleared it. That’s real.’
Dynamic commissioning was essential, he said – ‘doing something, seeing it doesn’t work, then doing it differently. We’ve got to move quickly, keep the momentum going. But we’ve got to maintain the discrimination-free approach. When I started HIV and hepatitis C were feared diagnoses because there was terrible, overt discrimination. All of that’s gone, but it will come back if we’re not careful. So we’ve got to maintain the focus – to keep talking about stigma and getting rid of it.’
Underfunding and fragmented care were among the levers creating stigma, along with other issues like restrictive and coercive treatment policies, said principal public health specialist at the London Borough of Hackney, Maggie Boreham. A recent paper had stated that illicit drug use was the most stigmatised mental and physical health condition worldwide, ‘because it’s considered to be about bad choice, bad character, some form of weakness’, she said. ‘This is 2022 – it’s just not good enough.’
‘We’re all thinking in the same way, and working together as a system – and that’s pretty rare in healthcare,’ director of corporate services at the Hepatitis C Trust, Leila Reid, told delegates. ‘We’re in a brilliant place, with a couple more years of the elimination programme, and it’s been amazing seeing the role of people with lived experience being so front and centre to this. We’re doing brilliantly on treatment, brilliantly on engagement but we’re not doing quite so brilliantly on harm reduction. So that will be pivotal over the next couple of years.’ DDN