The liver is a vital organ which performs several important functions in the body, such as converting sugar from food into energy, and fighting infections.

The hepatitis C virus, or HCV, which affects the liver, can therefore have a significant impact on health; and in some cases lead to very serious illness.

The path that a hepatitis C infection follows can vary greatly from person to person. Some patients will be unaware that they are carrying the infection; whereas others can become acutely ill immediately following infection, although this is quite rare.

Transmission can occur through blood to blood contact and, very rarely, from an infected mother to baby.

Historically, the condition has been a difficult one to treat and, due to its capacity to be asymptomatic during its early stages, easy for those infected with the virus to miss. 

However in recent years, several developments have been made in treatment, which has led some experts to predict that the virus will be eliminated in the decades to come.

To find out more about the condition, we contacted the team at The Hepatitis C Trust, and Charles Gore, the Chief Executive, kindly took some time to answer our questions.

Hepatitis C: who does it affect?

It is estimated that over 200,000 people are living with hepatitis C in the UK, and yet many people are unaware that they have the condition due to a lack of symptoms and not being screened.

As Charles tells us:

‘The largest risk group for hepatitis C is people who inject drugs, many of whom have chaotic lives and are out of touch with health services. There is a high prevalence of hepatitis C within some South Asian and Eastern European communities due to unsterile medical practices in these countries, but this group is also unlikely to see themselves as at risk, with hepatitis C considered a ‘drug-user’s disease’.’

‘Many of those still living with hepatitis C may have received infected blood before 1991 or be from a cohort of people who injected drugs a long time ago, perhaps only several times, and do not consider themselves to be part of this risk group.’ Charles adds.

Those who fall into these categories are encouraged to attend regular testing for hepatitis C as well as other infections.

Charles explains that: ‘the biggest challenge to eliminating hepatitis C is reaching those who are living with hepatitis C but not yet diagnosed, and ensuring they are referred into treatment as quickly as possible. According to estimates by Public Health England, 40-50% of those living with hepatitis C in England remain undiagnosed.’

Testing for hepatitis C

Hepatitis C can usually be diagnosed through two blood tests: the antibody test and the PCR test.

  • The antibody test checks to see whether the immune system is producing antibodies to fight the virus.
  • The PCR test checks if the virus is still present and reproducing in the body.

The results of these are usually available within two weeks.

Further blood tests and scans may be required to determine the extent of any damage that has been caused to the liver.

So, what measures are being taken to encourage at risk members of the population to get tested?

‘Testing in substance misuse services has been increasing in recent years, but is still suboptimal in some areas.’ Charles explains. ‘We would like to see the introduction of opt-out testing in substance misuse services, with monitoring systems and targets put in place as part of commissioning contracts.

Charles also mentions the particular strategies in place to test for hepatitis C in the English prison system.

‘Since 2017, there has been a universal opt-out testing policy in place for prisons in England, but uptake of testing and treatment in prisons is still highly varied. Some prisons are regularly achieving testing rates approaching 80% of new receptions, while in others, barely 10% of new receptions are being tested. There is a need for more robust national guidance on the implementation of testing in prisons.’

How is hepatitis C treated?

Most people diagnosed with hepatitis C can be cured with treatment. This has led both NHS England and the World Health Organisation (WHO) to announce target dates for when they hope to achieve widespread elimination of the disease (which we’ll discuss in more detail later).

As Charles goes on to explain:

Until 2014, hepatitis C treatment was delivered via injection, lasted between 24 and 48 weeks, resulted in significant side effects, and had an overall cure rate of less than 50%.’

‘New direct acting antiviral (DAA) treatments first became available in 2014. These treatments are tablet-based with a duration of 8-12 weeks, have few side effects, and result in cure rates of approximately 95%.’

The complex nature of the hepatitis C treatments available prior to the introduction of DAA meant that patients were more at risk of slipping through the healthcare system’s net.

Due to the vast improvement in treatment access and suitability, patients are now more likely to complete their treatment course.

‘DAA treatments make delivery of treatment exponentially easier and more palatable for patients.’ Charles tells us.

‘Treatment can now be delivered through community services, which are easily accessible to patients in settings where they are comfortable and linked to other support needs; like pharmacies, substance misuse services, homeless hostels and primary care.’

‘This eliminates the need for visits to hospital or cumbersome monitoring appointments throughout treatment, which were particularly challenging for patients with chaotic lives.’

Although DAA treatments have modernised the way that those with hepatitis C are treated, the road to elimination is not without its difficulties, as Charles explains:

‘The challenge now is to ensure the systems are in place to enable delivery of treatment in the community, as well as finding the undiagnosed and engaging them into treatment.’

Hepatitis C elimination: NHS England and WHO target dates

NHS England and the World Health Organisation have recently announced targets for eliminating hepatitis C, as they hope to relegate the virus to classification as a ‘very rare’ disease.

At the beginning of this year NHS England announced their target date of 2025, a whole five years earlier than the target date set out by WHO.

The NHS announcement of upcoming negotiations with industry,’ Charles explains, ‘intended to support the elimination of hepatitis C in England by 2025, promises to agree a role for the pharmaceutical industry in expanding programmes to find currently undiagnosed patients and initiate them onto treatment.’

So, what potential obstacles could prevent this target elimination date being achieved?

Charles highlights: ‘Sub-optimal testing levels, regional caps on treatment, overly complex care pathways, a fragmented commissioning environment, and short-term treatment funding models all present significant challenges.’

‘Currently, experts across the hepatitis C care pathway tell us without exception that England will not meet the WHO goal of eliminating hepatitis C by 2030 unless the number of people receiving treatment is greatly increased.’

We also asked Charles what he thought would need to be done to bring the target of 2025 within reach.

Expanded testing initiatives in community settings and new ways of incentivising and contacting those who may be at risk will be necessary to overcome these challenges.’ he explained.

‘There are still significant missed opportunities to encourage people to get tested in other locations with high concentrations of at-risk groups. Currently, most testing takes place in primary care or drug services, but could also be encouraged in pharmacies, hostels, day centres, police custody, A&E, children’s centres, or through street outreach teams. New methods of incentivising people to get tested should be considered, including financial incentives for at-risk groups coming to test or bringing others to test.’

Charles goes on to explain that: ‘the development of a national hepatitis C elimination plan with bold new strategies and ambitious targets for increased treatment numbers is essential if the UK is to meet or exceed the WHO goal.’

Accessing support

Receiving a hepatitis C diagnosis and commencing a course of treatment can be a daunting time for patients, but there are schemes in place to help.

Charles mentions that the support provided by peer programmes is particularly encouraging.

‘Peer programmes – where interventions, including talks and ‘buddying’ to appointments, are delivered by a former patient from a similar life background – are a highly effective way of providing support to hepatitis C patients. They also raise awareness and encourage people to get tested and treated. Experts tell us that the credibility of peers in at-risk communities, particularly in prisons and among people who inject drugs, is far greater than any messaging delivered by health professionals and far more effective in getting people into treatment.’

‘Peer programmes for hepatitis C are currently run by The Hepatitis C Trust across the country, and the peer-to-peer approach is used by many voluntary organisations and substance misuse services. However, peer programmes could be expanded and included as an integral part of hepatitis C treatment services in commissioning contracts.’

The shorter treatment timescale for many hepatitis C patients has meant that traditional support groups are now not as favoured as they have been in the past.

As Charles explains, ‘While there are still local hepatitis C support groups in some areas, take-up of these has been falling as treatment is now relatively short, simple, and comes with few side effects.’

Those looking for easy-to-access, confidential support can contact The Hepatitis C Trust via their helpline.

The Hepatitis C Trust runs a national helpline staffed by former patients with expert knowledge,’ Charles explains, ‘providing non-judgmental advice and support on any matters relating to hepatitis C.’

You can find more information on the Hepatitis C Trust website.