Why isn’t more being done to tackle hep C?

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Charles Gore

A new report is calling for hepatitis C to be prioritised as a major health inequalities issue by Public Health England, the NHS and local authorities. 

Although hepatitis C is a curable virus, just three per cent of those infected are treated each year in England, according to a new report from the Hepatitis C Trust.

This has led not only to vastly expensive emerg­ency hospital admissions for potentially avoidable complications, says The uncomfortable truth: hepatitis C in England, but an almost fourfold increase in deaths and admissions for hepatitis C-related end-stage liver disease and liver cancer in the last 15 years.

Around half of the people in England who inject drugs are infected with hepatitis C and access to sterile injecting equipment is vital, says the document, as is ‘treatment as prevention’ – treating people to reduce the likelihood of future transmissions. The report also explicitly refutes the assumption that drug users’ lifestyles are too chaotic for them to adhere to treatment programmes.

‘That’s not the evidence,’ Hepatitis C Trust chief executive Charles Gore tells DDN. ‘People keep asking the wrong questions – instead of asking, “can we give these people treatment?” they should be asking, “how can we give these people treatment?” If you ask that, you find a way – it’s really not that difficult. People can adhere to treatment as long as you arrange it so that it’s convenient. There are undoubtedly some people whose lives are too chaotic, but there are people who aren’t using drugs whose lives are too chaotic – in the middle of an incredibly messy divorce, say. It should be assessed in exactly the same way.’

One major problem is the huge variations in service provision – and waiting lists – across the country, he points out, alongside variations in who will actually treat drug users, ‘or indeed substance users – I heard in the last few days about somewhere where they were insisting on people being abstinent from alcohol for six months before treatment, which is ridiculous,’ he says. ‘In other parts of the country people are very unconcerned about that – it’s “are you ready for treatment, can we support you properly?”’

The trust published a report earlier this year that said local authorities weren’t ready to take responsibility for hepatitis C, with only a quarter actually having any figures on how many people were infected in their area. Has there been any improvement on that front? ‘We haven’t done a follow-up yet, but anecdotally I’m not at all sure that they’ve completely got their heads around public health,’ he states. ‘On a more positive note, I do think that Public Health England are definitely getting themselves in order and they do seem to understand that hepatitis C needs to be a priority – they’re certainly looking to really improve things in prisons, for example. 

When it comes to drug services, the report calls on them to establish peer support programmes and encourage testing, among other measures – does he think that hepatitis C is enough of a priority for them? ‘No, and too many make assumptions about people’s readiness and priorities. Everyone they come into contact with should be tested for hepatitis C. Then they should be referred, and it’s not up to a drugs worker to take a decision about somebody’s readiness – and more importantly, their need – for treatment. How do you know they don’t have cirrhosis? It’s not enough to say “they’ve got other priorities” – their priorities might change if they’re told, “if you don’t do treatment now you’re not going to be able to do it, and you’re going to be looking at a liver transplant”. It’s about testing, then it’s about referral, then it’s about supporting people into referral.’

Given that many people with a substance use history have not always ‘been treated so fantastically well’ in hospital they may not necessarily be inclined to go, he says, and may need motivational help. ‘But it’s not about forcing them onto very difficult treatment – it’s about assessing them and giving them choices. They’re not going to be forced to have a biopsy, which is another fear people have. It’s about making sure they’re in the system so if they need to do treatment they have the option, and if they don’t they can do it a point that’s good for them. Given that we’re moving to this era of much easier drugs for a much shorter duration, it would be sad if they didn’t have that option.’

It’s also vital that the right information gets out to drug users, he stresses, and the message is a simple one. ‘The first thing is, it’s really important to get tested, because if you’re negative you can be given the information about how to stay negative. Very often people think they’re infected, whereas 50 per cent of injecting drug users don’t have it, so you might well be in the 50 per cent who don’t, and you can avoid it. If you’re positive, it’s about how not to transmit it and that there’s treatment available, so you can get rid of it.

‘Just because you’re using drugs doesn’t mean you don’t have a right to treatment, and the trust is there to fight for people if they come across snooty hepatologists who say “no, you’re too difficult”. You have the right to treatment. And it’ll cure it.’

The uncomfortable truth at www.hepctrust.org.uk