Despite its prevalence, hepatitis C has long been under-prioritised by health services. But could new drugs and a new commitment from the NHS mean we may finally see this killer condition eradicated?
Last month Public Health England (PHE) published the updated version of its ‘liver disease atlas’, which unsurprisingly made for grim reading. Not only does liver disease account for 12 per cent of total deaths among men in their 40s, but people in the most deprived communities who die from the condition will do so a decade earlier than those in more prosperous areas (see news, page 5).
While many of the deaths on the PHE map are alcohol-related, many more will be a result of hepatitis C, and PHE has renewed its call for people to get tested as a ‘substantial proportion’ of those living with the virus are unlikely to be aware that they are infected (DDN, September, page 4).
Despite hep C’s prevalence and its reputation as the ‘silent killer’ the condition has been, says the Hepatitis C Trust, ‘grossly under-prioritised’ by health services (DDN, November 2013, page 4). That, however, seems to be changing, with a recent commitment from NHS chief Simon Stevens to invest in ‘revolutionary’ new treatments and continue to work closely with the pharmaceutical industry to bring prices down.
The comments were ‘really welcome’, Hepatitis C Trust deputy chief executive Rachel Halford tells DDN , as ‘he’s out there in public now – there’s a commitment that there perhaps wasn’t two years ago’. The trust however has stressed the need for the government to take ‘bold action’ in partnership with the industry to make availability of the new treatments universal.
‘I think there’s been a great improvement,’ says Halford. ‘I think the biggest problem we have now is finding all the undiagnosed. If things continue as they are, the concern is that the ODNs [Operational Delivery Networks for treatment] run out of patients so the emphasis has to be on finding the undiagnosed and supporting people into treatment. We’ve got Simon Stevens’ comments, the price of the drugs has dropped dramatically and we know that there are more coming on line, so essentially what we need is to ensure that we have the people in place to access the treatment.’
While stigma inevitably remains a significant barrier it’s also important to ‘change the actual message’, she stresses. ‘You have people who perhaps were diagnosed some time ago and have dropped off the radar, and one of the things we hear from drug services we work with is that people still think they’ll be getting interferon. We need to change the message so that it’s about oral treatments with no – or limited, short-term – side effects. Stigma will always be an issue, but if we can we raise awareness around the new treatments then it all becomes more common. So hopefully you’ll just go to your GP, get your prescription and off you go, as with something like antibiotics. That ease of access in itself would de-stigmatise it.’
A new report from the London Joint Working Group on Substance Use and Hepatitis C (see column, facing page) sets out a number of recommendations for improving access, including that testing be offered in all drug treatment services and needle exchanges, and GP practices be commissioned to offer testing to former drug users and those not in contact with services. The report also wants to see integrated HCV treatment commissioned within drug treatment where possible, a call the trust backs.
‘Part of the remit of the ODNs is to have outreach, and drug services are the obvious places to do it – there are some that already do,’ says Halford. ‘There’s no reason why nurses can’t be out there doing everything and going into drug services. We’ve got a pilot in Birmingham where a nurse runs a clinic inside a drug service, which we’re running with the support of peers to see if we can reduce DNAs [Did Not Attends].’ Another opportunity is prisons, she states, with estimates of the proportion of the prison population with hepatitis C ranging from 10 to 24 per cent. ‘The prevalence, if you average it out, is probably around 15 per cent – that’s a big prevalence, and a captive audience.’
The trust has said before that with the right action there’s no reason why hep C couldn’t be eliminated within the next decade. Does the new NHS position make that aim more realistic? ‘I think it does,’ she says. ‘And also the work happening in Scotland and Wales – they’re the ones leading the way with their commitment and action towards elimination, so what we need to see from our government is some kind of framework or action plan. While it’s fantastic that Simon Stevens has stood up and said what’s he’s said, we still don’t have a strategy, a plan, a framework.
‘The framework we worked on with NHS England was abandoned last year, and they were going to be putting together some kind of operational delivery framework but that hasn’t come to fruition either. So I think what we need is something substantial in writing that lays out the pathways and maps out exactly how we’re going to achieve this, because we will see that in Scotland and Wales. They can calculate the numbers they’re treating, how many will be left in 2020, and so on. What we need to see is our government and the NHS doing that as well.’
WITHIN OUR GRASP
We can win the war against hepatitis C but we need to seize the opportunity, says Dee Cunniffe
We have seen great strides in the development of treatment for hepatitis C in recent years. Revolutionary new drugs for this life-threatening disease, which can result in cirrhosis, liver failure or liver cancer, can save people’s lives and make a real difference. But the battle has not yet been won.
Despite the introduction in 2014 of new direct-acting antiviral drugs, which can cure hepatitis C in more than nine out of ten cases, there remain huge barriers to those attempting to access treatment. Through our new report, the London Joint Working Group on Substance Use and Hepatitis C (LJWG) reveals that increasing the number of people treated with these medicines offers the potential to halve disease burden in ten to 20 years.
This is an exciting and important opportunity in our efforts to reduce the number of people dying from the disease by 65 per cent before 2030. However, significant action and progress is needed to enable access to these life-saving drugs – especially for the vulnerable, socially excluded sections of the population who inject drugs.
Furthermore, this isn’t just about increasing access to the treatments themselves. With 40 per cent of people living with hepatitis C in London estimated to be undiagnosed, access is only half the battle. To successfully eliminate the disease, we need to ensure this ‘silent killer’, which often remains undetected for many years without symptoms, is diagnosed effectively. This will require services to shift their approach across the patient pathway, from improving testing regimes to enabling better access to drugs.
Current service provision across the country, and particularly in London, is often patchy, disjointed and unable to support the needs of vulnerable, socially excluded populations such as people who inject drugs.
So, what can we do to improve services?
Firstly, we need to ensure there is more ‘joined-up’ thinking across services in all London boroughs. Improved coordination will enable patients to receive the testing and treatment they need, where and when they access it. Joint commissioning arrangements should also be developed between clinical commissioning groups (CCGs) and public health to ensure robust and deliverable pathways are established.
Secondly, all boroughs should create and implement a strategy specifically targeted at addressing liver disease and hepatitis C. An important area to be tackled here is reaching people who inject drugs. This remains the major risk factor for becoming infected.
Our third key call is for hepatitis C antibody testing to be offered in more places across the capital. Testing should be accessible at all drug treatment services and other venues, such as needle and syringe exchange programmes, as well as in pharmacies.
While significant challenges remain to successfully eliminating hepatitis C, our findings offer hope that we can significantly reduce the number of lives lost to the virus. Joining up services and improving access to these revolutionary life-saving drugs can enable us to halve the disease burden in ten to 20 years, helping us on our way to achieving our targets. This might seem ambitious, but with the right structural changes, it’s firmly within our reach.
Dee Cunniffe is a policy lead on the London Joint Working Group on Substance Use and Hepatitis C (LJWG)