NHS England’s target date to eliminate hepatitis C is now just six years away. DDN hears what progress has been made, and what’s left to achieve, at the LJWG on Substance Use and Hepatitis C annual conference.
‘The strategy from NHS England has always been to eradicate hepatitis C,’ NHS clinical lead for hepatitis C, Dr Graham Foster, told December’s Seven years to elimination: the road to 2025 event. ‘We’ve never pulled punches – we just want to get rid of the damn thing for once and for all.’
Reductions in drug prices meant this was now achievable, he said, and the strategy had been to split the country into networks and allocate treatment numbers accordingly. ‘From the get-go we insisted on outreach treatment, and we insisted on using the cheapest drugs. The strategy is to get out there and find and treat, and we’ve been pretty successful. We’re still not testing enough, but the figures are moving up. We are working, we are curing people, the strategy is being successful.’
Testing rates in good drug services stood at around 95 per cent, while in some it was as low as 5 per cent. ‘So the challenge is to move that bottom segment into the top segment’. Treatment in prisons remained poor, meanwhile, and too many needle exchanges still weren’t offering testing. However, death rates were falling, as were waiting lists for liver transplants.
But the main challenge was that ‘too many people with a history of drug use still aren’t getting tested’, he said. ‘We need to look at the good services and follow their lead.’
‘For me it’s about supporting services to be doing this treatment themselves,’ said nurse consultant at King’s College, Janet Catt, adding that peers were fundamental to reaching marginalised populations. ‘A lot of people know they’re positive, but hep C treatment can also help them engage more with drug treatment and build goals for themselves,’ added peer support worker Chris Laker. ‘Word of mouth builds that treatment is accessible and successful. Clients really want this.’
People who inject drugs accounted for 95 per cent of all new diagnoses, consultant hepatologist at Chelsea and Westminster, Dr Suman Verma, told the conference. They were a group that tended to ‘dip in and out’ of treatment, she said, and were often of no fixed abode, with no GP and no NHS number. ‘But they do engage with needle exchanges.’
This is where a recent pilot project offering testing in pharmacies with needle exchange facilities had proved so successful (DDN, June 2018, page 5). The aim had been to develop sustainable, effective point-of-care testing and pathways into treatment, she said, adding that it was important that participating pharmacies had adequate facilities for confidential discussion and were able to refer patients with positive tests to the appropriate pathway.
‘But what do you do if you have no fixed abode?’ The answer was the pharmacies themselves acting as mailing addresses for clients so they wouldn’t miss appointment notifications, she said. In the pilot more than 50 per cent of service users were found to be antibody-positive, and 57 per cent of those tested were unaware that treatment was now interferon-free. ‘Opportunistic HCV testing in NSP community pharmacies can be really effective,’ she stated.
‘We all know that hepatitis C is a huge health inequality issue that affects some of the most marginalised,’ said London Assembly member Susan Hall. ‘So it’s a travesty that it wasn’t part of the mayor’s recent report into health inequalities. It shows what a battle we have on our hands to get people to take notice.’ There was growing momentum from more and more organisations to take action, however, but this would need a ‘huge amount’ of joined-up working across often complex networks.
In terms of the practicalities of operational delivery networks (ODNs) meeting their HCV targets, Dr Katherine Morley of the National Addiction Centre at King’s College shared the results of an evaluation project on identifying obstacles. Among the main themes that emerged were degrees of confusion over who should be meeting Public Health England (PHE) reporting requirements, as well as issues around referrals to secondary care as a result of service user drop out, often related to time lag. Missing data was also a problem, the result of providers having different electronic patient record systems – ‘an endemic problem across the NHS’.
Chair of the British Viral Hepatitis Group, Dr Andy Ustianowski, described the methods used in Greater Manchester’s HCV elimination programme, and the lessons learned. The first step was to ‘get an idea of what you’re dealing with – the numbers’, he said, and also to ‘get rid of preconceptions’. The next step was always to ‘contemplate the simplest model’ and work out how to get people to engage for minimal cost.
‘Work out what needs to be done – what’s absolutely necessary and what’s “nice”,’ he told delegates. ‘The “nice” might need to be sacrificed.’ The programme was treating around 930 people a year, he said, using community pharmacies and reaching out to treat people’s networks. ‘Before we treat them we incentivise them to bring their network up for testing.’
Also useful were interrogation of records, rapid prison diagnosis and treatment, and – just as importantly – knowing when an initiative had reached its logical conclusion and should be stopped. The programme was currently also scoping the possibility of testing in primary care and A&E settings, he added. ‘Anyone who’s got a good idea, I’m happy to shamelessly nick it.’
‘One of the things I feel in retrospect is why is it so difficult?’ said former Hepatitis C Trust chief executive Charles Gore. ‘We have these drugs, they cure people – so why does it seem such a struggle?’ In the 1990s, after his hepatitis C diagnosis, he had only been able to find one support group, he said. ‘Everybody was using heroin, and half of them were nodding out – it didn’t feel very supportive.’ He had set up the Hepatitis C Trust despite having ‘no useful experience’, as there was not a single charity for the condition. ‘It was very much on-the-job learning. But I cared about people with hepatitis C, particularly those who don’t have a voice.’
Although the charity had had to abandon its aim of only employing people with a hep C diagnosis after it proved ‘way too restrictive’, it was still driven by the belief that ‘people with lived experience are incredibly useful’, he said, with the role of peers now central to the hepatitis C response in the UK.
Awareness remained a critical issue, and not just in this country, he stated. ‘The big problem is that not enough people are diagnosed, and I’ve become a big convert to the idea of screening. There’s now screening in drug services and prisons, but we need to do more of it. And with the cost of the drugs coming down, it means you can spend more money on screening and it will still be cost effective.’
There were now discussions about long-acting injectables for the condition, he told delegates – ‘one shot and that’s all. It looks like that might be possible’, while in the past NHS England’s rationing of drugs had been ‘appalling’ (DDN, April 2017, page 20). ‘In my view that was simply because of the assumption that people with hepatitis C were a disadvantaged group, and wouldn’t complain too much.
‘I truly think this is doable, and we’re beginning to see more and more countries saying, “yes, we want to do elimination”,’ he continued. ‘We have a cure for a disease that kills people, and we don’t do it? That’s just insane.’
‘There are lots of things yet to do, there are still some challenges,’ Dr Suman Verma told the conference. ‘But we just have to keep on pushing harder.’
Speaker pictures by Jon Derricott. To view video footage of the event visit Jon Derricott’s YouTube channel.