Dee Cunniffe, Policy Lead, London Joint Working Group on Substance Use and Hepatitis C
I first became fully aware of how devastating hepatitis C could be through someone who was very close to me who I observed over many years suffering from the effects of the virus. Hepatitis C made him constantly exhausted, he had to go through invasive biopsy assessment and felt isolated and stigmatised by the disease. In the early 2000s he underwent interferon treatment (the only treatment available at the time) which was horrendous – it made him seriously depressed to the point of being suicidal, and he had to stop the treatment before he was cured.
I soon realised that this person who was very important to me wasn’t alone in his experiences, although at the time it felt very much like he was. We met more and more people who had hepatitis C, and who had similar stories – limited or no access to support, poor availability of information and sporadic access to treatment.
That’s what led me to want to do something to address hepatitis C – a huge health issue that never seemed to make headlines and was so often overlooked and misdiagnosed. I spoke to several health care professionals and patients from across London who I knew were similarly frustrated by lack of attention on hepatitis C, and in 2009 we decided to start the London Joint Working Group on Substance Use and Hepatitis C (LJWG). Hepatitis C is transmitted through blood-to-blood contact, therefore sharing needles or works is a common route of transmission and around half of people who inject drugs are living with hepatitis C. We knew that information and pathways to care for this vulnerable group of people were at best patchy and at worst, non-existent.
Since those days I am so delighted that the whole landscape had changed for people living with hepatitis C. New NICE-approved drugs, that can be taken in tablet form for usually around 12 weeks with minimal side effects, will cure the virus in almost all patients. And through the dedicated and heartfelt work of many individuals and organisations, there is more (although not enough) public awareness about hepatitis C and less (although still too much) stigma.
But we still have a lot to do!
The brilliant new curative treatments mean we could eliminate hepatitis C once and for all. For us in London that means diagnosing and supporting into treatment the 40,000 people living with hepatitis C in the capital.
The LJWG brings people together who are committed to this aim. From drugs service workers, patient experts, GPs, prison healthcare staff and the specialist hepatologists and nurses, we all have a part to play. Our annual conference, this year on the 3 December at the Guildhall, brings all these people together and is free for NHS and third sector staff to attend (you can find out more and book here).
Another exciting project we are working on is the introduction of hepatitis C testing in pharmacies that offer needle exchange services. This offers an important opportunity to engage with a very vulnerable, high risk group who do not regularly engage with drugs services or GPs. We piloted testing in eight pharmacies in London earlier this year and found that just over half of those tested had hepatitis C antibodies, meaning they had been exposed to the virus and needed to be referred for testing for active infection. The pharmacies involved were directly linked to hospitals that could support patients with further testing and treatment, and we are now rolling out a second phase of the pilot that tests people for active hepatitis C infection (you can find out more here).
One of the most interesting findings of our first pharmacy testing pilot for me was that 57% of people that the pharmacists engaged with did not know that hepatitis C treatment is now interferon free. This is hugely important. I have seen first-hand how debilitating interferon treatment is and know the idea of it will be a serious deterrent to people getting tested and treated, so we need to do much more to shout about the new treatments and to make sure everyone knows that they can be easily tested and cured, without having to use interferon.
Sometimes working in the field of hepatitis C has felt like an uphill struggle – in our stretched NHS it’s been hard to get the proactive action needed to raise awareness, to diagnose people and to give them the support and treatment they need.
However, we now have momentum I have not seen before and an ever growing number of committed doctors, nurses, drug service staff, patients and others who are dedicated to finding, supporting, treating and curing everyone with hepatitis C. We are inspired by the goal of eliminating hepatitis C so it is no longer a blight on anyone’s future, and I know we’ll get there.
You can find out more about the LJWG here: www.ljwg.org.uk.