Curing hepatitis C has become a reality and makes sense for the public purse as well as public health. So let’s get on with it, says Dee Cunniffe.
If you heard there was a disease that affected an estimated 216,000 people in the UK, including 160,000 people in England, and was contributing to an increased mortality from liver disease – one of the five ‘big killers’ – and also posed a significant public health risk, 
you might say that something should be done about it. In the case of hepatitis C, the ball has started to roll, but those of us who work in this area know that so much more could, and should, be being done right now.
Hepatitis C – also known as hep C or HCV infection – is a virus that infects the liver. It is usually spread through blood-to-blood contact, and if left untreated, can cause serious and life-threatening damage. It’s for this reason that it is sometimes known as the ‘silent killer’ as it can remain undetected for many years – currently an estimated 40 per cent of people don’t even know they have the condition.
We know that hepatitis C is a condition of inequalities, disproportionately affecting marginalised groups. Injecting drug use remains the major risk factor for infection in England, 50 to 80 per cent of injecting drug users are infected with hepatitis C within five years of beginning to inject (Hepatitis C in London, PHE, 2015).
Formed in 2009, the London Joint Working Group on Substance Use and Hepatitis C (LJWG) is a group of expert clinicians and patient advocacy and voluntary sector leads, working in collaboration with a wide group of stakeholders. Our common goal is to implement an integrated plan to drive improvements in the prevention, diagnosis, treatment and outcomes of hepatitis C in people who use drugs, and reduce the spread of the virus. Our ultimate mission is to prevent new infection in people who do, or who have, injected drugs (PWIDs) in London and to help treat and eliminate HCV as a public health threat.
Why is this important? Well, we know from the PHE figures that the prevalence of hep C among people who inject is higher in London (55 per cent) than elsewhere in England (45 per cent) and that currently there are around 60,000 people in London who carry the virus.
But here’s where the figures get worrying. LJWG’s Public health report on commissioning of HCV services in London for people who inject drugs (2013) found that only three per cent of people diagnosed with hep C in London are being treated – an even smaller proportion than the 4.2 per cent in the rest of the country), and only one in three London boroughs has a hep C testing-to-treatment pathway.
In London’s prisons the situation is similarly poor, says PHE, with only 6.4 per cent of new receptions reported as having been tested, compared with 7.8 per cent in the rest of England. When people with chronic HCV infection remain undiagnosed, they in turn fail to access treatment. Often they will then present late with complications of HCV-related end-stage liver disease (ESLD) and cancer, which we know have low survival rates.
However, there is plenty that can be done about the current rates of hepatitis C in London and elsewhere around the country. The main causes of liver disease are alcohol misuse, obesity and viral hepatitis and of these, hepatitis C is the one most amenable to intervention. When the new wave of direct acting antiviral (DAA) drugs came onto the scene a couple of years ago, the outlook became significantly brighter for hepatitis C patients: this disease is now curable in 90-95 per cent of cases. This means that our vision to help eliminate HCV as a public health threat now lies in the realms of the possible.
Our work with substance users in London shows how much of a difference these new medicines have made. Our LJWG hep C care booklets, produced in collaboration with Magdalena Harris from the London School of Hygiene and Tropical Medicine, include comments from clients like Brad, who said: ‘I’m thinking about my future in a different way now. I’ve started to be a bit more positive and started thinking right, I could get rid of this. If I get rid of this within the year, that’s it, I’ve got a new life.’
Or Ivan, who said: ‘Getting shot of hep C, it’s making me more confident… free… I just feel so much more lifted. I really do, and if it didn’t work at least I was given the option, at least people are trying for me, they’ve not given up on me, thinking “he’s not worthless”. They’re thinking “he’s worth it, let’s give him a hand”.’
The LJWG is a member of the Hepatitis C Coalition, a national group of clinicians, patient groups, charities and other groups who also want to see a more coordinated and effective approach to testing, treating and curing people with hepatitis C in the UK, and greater emphasis on the prevention of new infections. Finding patients through community outreach – through drug and alcohol services particularly – getting them tested and on to treatment in a timely manner is ultimately a win-win situation: people suffering from hep C can get the disease out of their system and get on with their lives, while the NHS saves itself cash from having to treat advanced liver disease for the same patient later on down the line.
Liver disease costs the NHS around £500m every year and the figure is rising annually, so testing and treating for hepatitis C – especially among the most at-risk groups of people – should be a national priority.
That’s before the severity of the public health risk is put into the picture. The sooner people are cured, the sooner they no longer pose a risk to others of passing on the disease. Among people who inject drugs, that has to be a major concern. The mantra of ‘test, treat, cure’ covers all bases and solves the issue.
The call to action therefore needs to be three-fold: increase testing, increase diagnoses and maximise treatment for all those with hepatitis C, especially for people who inject drugs. The LJWG is committed to working towards this goal and invites all those who share our vision to get involved with us.
Dee Cunniffe is policy lead of the London Joint Working Group on Substance Use and Hepatitis C.
The LJWG will be holding its annual conference at the Guildhall in London on Tuesday 26 September 2017. Click here for more information and to get involved.