Organisations and peers have risen admirably to the challenge of continuing the hep C elimination fight during the COVID crisis, heard delegates at LJWG’s annual conference. But the final steps towards elimination will be the hardest. DDN reports.
‘The last year has been incredibly tough for everyone, but it’s been inspiring to see how different organisations have come together on this issue despite the pandemic,’ London mayor Sadiq Khan told the London Joint Working Group on Substance Use and Hepatitis C’s (LJWG) annual conference – an online event this year. Just one example had been the ‘enormously successful initiative to offer blood-borne virus testing to homeless people housed as part of our Everyone In scheme (DDN, September 2020, page 6), which spread awareness about the virus and the treatments available’.
Stores of Hope
While the situation was still ‘incredibly challenging’, said event chair Vicky Hobart – the Greater London Authority’s (GLA) head of health – there were ‘real stories of hope’ in what could be achieved with effective joint working. The Routemap to eliminating hepatitis C in London (DDN, May 2020, page 10) steering group had continued to meet, while the initiative to roll out BBV testing for homeless populations in temporary accommodation had been ‘a flagship moment’.
More than 1,000 people had been tested – 7 per cent with active infections – and more than 40 had already started treatment, she said, with partners now looking at how this approach could be applied to other settings. Future priorities would include multi-morbidity testing and diagnosis, opportunities for co-commissioning and ‘real efforts and pressure towards faster testing and turnaround of results’.
London had been a world leader in its response to hep C, chief executive of the World Hepatitis Alliance, Cary James, told the conference. The alliance had launched a survey to measure the impact of the COVID crisis, with responses from more than 30 countries. ‘Just about everyone said that their services had been interrupted, but everyone was talking about how they’d been working to overcome these barriers – that shift was really inspiring to see.’
While Eastern Europe had reported significant problems in terms of people being able to access services, it was far less of an issue in the west, he said. ‘People and organisations in London really were leaders in that. Even before the COVID crisis, London was a leader globally in terms of its response to hepatitis C – the routemap being launched was a very strong indication of that – and what’s happened since COVID has hit has really reinforced it. We always hold up the great work being done here, especially around peer-to-peer services and the huge role community has in making elimination a reality. It’s something that’s really helping to educate the world.’
Globally, however, stigma remained a significant challenge, he said. ‘There’s generally a lack of compassion for people living with viral hepatitis. On paper, hepatitis elimination is such a no-brainer, but there’s a lack of empathy from the people who have to pick up that elimination plan and give it to their finance minister to pay for it. That’s one of the biggest challenges we face.’
Public Health England (PHE) was about to publish a document showing the pandemic’s ‘devastating impact’ on testing, said PHE consultant epidemiologist Dr Emily Phipps. ‘We saw a huge drop-off, particularly in the early days of lockdown.’ While this was the case across all settings, drug services had been hardest hit, and despite immense efforts from the Operational Delivery Networks (ODNs) treatment numbers had also fallen. ‘But without those efforts they really would be rock-bottom – so the ODNs really are to be commended’.
In terms of the impact on people who inject drugs, there had also been concerns around people being able to access injecting equipment and substitute medication, as well as ‘reported changes in risk behaviours’, she said, with one in six people surveyed by PHE reporting injecting more frequently.
‘But despite all the doom and gloom we’re still seeing a reduction in cases, and there are some very exciting numbers coming out of London in particular,’ she continued. ‘But as we come closer to elimination it’s going to become even harder to identify people remaining to be tested and treated,’ and optimising available data would be key to this. ‘There are still people in London who don’t know about direct-acting antivirals – not just patients, but also professionals including GPs – so there’s definitely communications work to be done as well.’
While the events of the last year had tested everyone to the limit, said clinical lead of the pan-London street outreach Find & Treat service, Dr Al Story, the Everyone In strategy had been ‘quite revolutionary – it was an amazing achievement to get so many people off the street and into accommodation.’ Rough sleeping had been increasing in London for almost a decade and had become ‘one of those problems that people had been conceiving as intractable and impossible – but it’s amazing what can be done with the political commitment’.
Having thousands of people in accommodation represented ‘amazing opportunity’, he stated. ‘We were given the green light to seize this opportunity and offer a full BBV screen to as many people as we could’, in partnership with a number of other organisations. The model was peer-led diagnosis and treatment initiation, ideally within a day – ‘and the vast majority of people we’ve engaged with have started treatment within 48-72 hours. We’ve been trying to take what was once a war of attrition – multiple appointments – and squash it into an outreach encounter that can be done in literally a few hours.’
In terms of the data, what was most striking was the ‘staggering number’ – almost half – who had never been tested, he stressed. ‘We know the population we work with can present some unique challenges but we’ve been delivering tuberculosis services to this same population for many, many years and we achieve outcomes that are better than in the general population.’ The team had also been expanding its work to the street sex worker population, he said. ‘So far just 30 women have been screened but the findings are quite mind-blowing. A very high proportion are homeless, a quarter are rough sleeping and almost half are currently injecting. There’s a very high undetected reservoir of hep C in that population, and a great opportunity to take services to people.’
COVID had ‘blown a greater wedge in what were already quite marked health inequalities’, he stated. ‘We’ve seen an increase in rough sleepers, and many people new to the streets are coming out of job loss and loss of housing tenure. And I think we haven’t seen the half of this yet.’ On a more optimistic note, the use of peers offered ‘an amazing opportunity’, he told the conference. ‘They’re not corrupted by medical training, they remain completely open-minded and agnostic and responsive to patients’ needs, and I think with the right tools and support they can lead the revolution here.’
One example was shared by the Hepatitis C Trust’s senior peer support lead, Imran Shaukat. ‘When COVID hit we had to adopt to a completely new model,’ he said. ‘A lot of clinical staff were deployed to ICU wards, meaning the charity had issues keeping the service going, so all the peers got together and almost reinvented the service. We absolutely adapted – we started doing the medication delivery and keeping in touch with people on the phone – and even though the pandemic was psychologically and physically challenging the silver lining was that we were working very closely with our partner organisations and found that co-working was just the way forward. It just naturally happened, and that relationship’s continued. That’s the key to elimination – everyone coming together under one goal.’
Peers were also able to engage very effectively with people not in drug services, he pointed out. ‘But my worry is that as the numbers are going down resources will start to be pulled back and leave us open to further spikes of the virus.’
‘The elimination agenda is a great objective, but these will be hard miles – the last few cases are the hardest,’ said Story. ‘From a co-commissioning perspective there’s real safety in numbers here – it makes great economic and practical and epidemiological sense to join up. And, most importantly, it makes sense for patients.’