Hepatitis C in London: 2022 data
Updated 29 July 2024
Notes on the report
Aim of report
This report describes the recent epidemiology of hepatitis C in London. It provides an update on trends and identifies areas and populations at increased risk. It aims to support the elimination of hepatitis C as a major public health threat by 2030.
Intended audience
This report is aimed at:
- healthcare professionals involved in the diagnosis and/or treatment of hepatitis C
- infected patients
- commissioners involved in planning and financing of hepatitis C services
- public health professionals
- researchers,
- government and non-governmental organisations working on hepatitis C
Data sources
This report presents data from:
- laboratory surveillance
- sentinel surveillance
- unlinked anonymous monitoring surveys of infections and risk among people who inject drugs
- drug treatment services
- mortality data from the Office for National Statistics
- transplant data from the UK Transplant Registry
See Appendix 1 for more detail on data sources.
Executive summary
Infection with hepatitis C virus (HCV) is an important cause of liver disease. Transmission typically occurs through exposure to the blood of someone infected with the virus. This could take place through sharing needles used to inject drugs or through unprotected sex.
Untreated infection can lead to end-stage liver disease (ESLD) and hepatocellular carcinoma (HCC). The World Health Organization (WHO) has set out a strategy to eliminate hepatitis C as a major public health threat by 2030. In 2021, WHO introduced specific impact targets for incidence and mortality.
In 2022, London accounted for 31% of laboratory case reports of hepatitis C in England. It had the highest rate of new laboratory reports (61 per 100,000 residents) compared to other regions of England.
The number of new laboratory-confirmed reports of hepatitis C (5,345) in London in 2022 was its highest in the last 10 years. It is important to note that the number of new laboratory reports cannot be used to reliably estimate new infections. This increase may reflect increased testing and reporting, including the opt-out testing scheme at emergency departments.
The rate of hepatitis C reports varied across local authorities in London in 2022. Lambeth had the highest rate at 567 reports per 100,000 population, and Bexley the lowest at 6 reports per 100,000 population. This variation may be due to different testing services and different risk factors amongst populations in these areas.
The greatest risk factor for hepatitis C infection remains injecting drug use. In London in 2020/21, 64% of people who had ever injected drugs (PWID) had anti-HCV antibodies, indicating current or previous infection. This was a slight increase since 2019 (59%).
Amongst PWID with anti-HCV antibodies, 24% tested positive for HCV RNA (indicating current infection), the lowest in the past 5 years following a consistent decrease each year. This is likely to be a result of improved testing and access to treatment for hepatitis C amongst PWID in London.
Uptake of HCV testing amongst PWID in London remained high at 91% in 2020/21, but so did sharing of needles within the past month, a key risk factor for transmission (29%). In the UK in 2021, while 89% of PWID had ever used a needle exchange, only 64% of PWID reported adequate needle and syringe provision, highlighting a need for improvement.
Most new reports of hepatitis C in London in 2022 were males (68%) aged 35 to 54 years (68%). There was an increase in the number of new reports in young adults aged 15 to 24 years. Since 2013, there has been a decreasing trend in new reports in children aged 1 to 14 years, who likely became infected through maternal to child transmission.
In 2022, the rate of new hepatitis C reports in London was greatest in the most deprived 10% of the population (63 reports per 100,000 population), and lowest in the least deprived 10% of the population (10 per 100,000). At least 10% of new laboratory confirmed reports of hepatitis C in London in 2022 reported ever experiencing homelessness.
In London in 2021, the under-75 crude mortality rate from hepatitis C-related ESLD or HCC was 0.55 per 100,000 population, meeting the impact target set out by WHO of less than 2 deaths per 100,000 population by 2030.
Treatment outcomes were available for a small proportion of hepatitis C cases from 2013 to 2022 (24%). Where available, 86% achieved a sustained viral response 12 weeks after treatment. A small proportion of cases in London were identified as becoming reinfected following treatment (2% from 2015 to 2022), varying by operational delivery network (ODN) and highest in West London ODN (4%).
In summary, great improvements have been made in London across multiple sectors to tackle hepatitis C. In particular, increased uptake of treatment has led to a dramatic reduction in severe disease. Cases of hepatitis C in London are more common among those from the most deprived populations. Risk of infection remains acutely associated with injecting drug use, and suboptimal needle and syringe provision remains a concern. Improvements in access to testing, treatment and harm reduction services, and monitoring the equity of access to treatment and care services remains essential for London to achieve the WHO goal to eliminate hepatitis C as a major public health threat by 2030.
Public Health recommendations
The following recommendations for London have been adapted from the Hepatitis C in England: 2023 report and Eliminating Hepatitis C in England: All-Party Parliamentary Group on Liver Health Inquiry Report. The recommendations are grouped by the relevant organisations and authorities focusing on:
- making improvements and monitoring metrics
- adequate harm reduction/prevention
- Increasing the numbers and proportion diagnosed
- Increasing the numbers accessing hepatitis C treatment
UK Health Security Agency
The recommendations for the UK Health Security Agency (UKHSA) are to:
- monitor needle and syringe programme activity, and advocate for these as cost-effective interventions that prevent hepatitis C transmission
- support commissioners of hepatitis C treatment and care services, primary and secondary care clinicians, and other stakeholders with data analysis and monitoring the availability, access and uptake of approved hepatitis C treatments in primary and secondary care, drug treatment services, prisons and other settings in London
- work with commissioners, providers of laboratory services, hepatitis C treatment and care services to improve the quality and availability of testing and treatment data on hepatitis C
NHS England
The recommendations for NHS England are:
- for health and justice leads to ensure that blood borne virus opt-out testing for new receptions to prisons in London continues to be monitored to inform strategies to improve the offer and uptake of testing
- for health and Justice leads to monitor harm minimisation policies in detention settings, including provision of disinfectant/decontamination equipment for sharps
- to continue working with public health agencies, clinicians and other stakeholders to monitor and support the equity of access to treatment and care services among individuals with hepatitis C infection in London
Local authority
The recommendations for local authorities are for:
- public health professionals working in London local authorities to include hepatitis C in Joint Strategic Needs Assessments (JSNA) and subsequent health and wellbeing strategies
- commissioners of services for people who inject drugs to sustain or expand, as appropriate, the current range of provision, including opioid substitution treatment and needle and syringe programmes according to NICE guidance
Other needle and syringe provisions may include:
- initiatives such as capillary blood sampling and point of care testing, and opt-out testing approaches
- testing to be introduced in as many community settings as possible, including pharmacies, homeless hostels, day centres, and through street outreach teams, in addition to sexual health clinics and substance misuse services
- ensure the legal requirement to report hepatitis C positive laboratory results to UKHSA, including those from dried blood spot testing
- PCR/RNA testing should be carried out, or reflex testing on antibody positive dry blood spot (DBS)
- drug treatment and BBV prevention services should ensure that appropriate information, repeat testing and support are provided to prevent re-infection
Integrated Care Boards (ICBs)
The recommendations for Integrated Care Boards (ICBs) are for:
- public health professionals working in London local authorities and ICBs to include hepatitis C in Joint Strategic Needs Assessments (JSNA) and subsequent health and wellbeing strategies
- commissioners and providers of laboratory services to ensure that RNA amplification tests are performed on the same sample as the original antibody assay (reflex testing) to reduce referral delays and increase cost effectiveness
- diagnostic laboratories should include patient referral instructions on the laboratory report, and implement direct reporting of new diagnoses to their ODN, as well as to the individual requesting the test
- ensure that integrated and robust pathways of care are available for patients with hepatitis C, ideally co-ordinated through a clinical network - this includes pathways for patients who test positive for hepatitis C in primary care
Operational Delivery Networks
The recommendations for Operational Delivery Networks (ODNs) are for:
- testing and treatment in the community to be prioritised, the patient pathway to be reviewed and flexible services located where patients are most likely to access them to be designed
- treatment must be made available in community settings, and be flexible and accessible to all patients
- treatment should also be made available to those who are re-infected in line with a ‘treatment as prevention’ approach
- ODN managers and clinicians should make targeted efforts to engage with currently injecting individuals infected with hepatitis C and offer treatment in accessible community settings
All stakeholders
The recommendations for all stakeholders are to:
- support improved awareness among professionals, for example by encouraging participation in e-learning
- continue to produce and disseminate appropriate communications, like reporting and infographics, to help mark World Hepatitis Day using resources
Background
Hepatitis is a term meaning ‘inflammation of the liver’. Hepatitis C is caused by infection with the hepatitis C virus (HCV). Symptoms can include:
- anorexia
- abdominal discomfort
- nausea and vomiting
- fever
- fatigue
HCV progresses to jaundice in approximately a quarter of infected patients. However, it can often be asymptomatic. Of those exposed to HCV, about 40% recover. The remainder, whether they have symptoms or not, develop chronic infection, which can lead to cirrhosis, end stage liver disease (ESLD) and liver cancer (hepatocellular carcinoma, HCC) (1).
Direct acting antivirals (DAA) offer a fast and effective cure to the vast majority of people with hepatitis C, without many of the complications associated with previous treatments.
In 2016, the WHO Global Health Sector Strategy on viral hepatitis called for 3 million people with chronic hepatitis C to have been treated by 2020 and for treatment coverage to reach 80% of the global eligible population by 2030 (2). This strategy was updated with absolute impact targets for incidence and mortality in 2021 (3). Eliminating hepatitis C as a public health threat by 2030 has been outlined as a key priority in the strategic plan of the UK Health Security Agency (UKHSA) from 2023 to 2026 (4).
As part of disease surveillance, UKHSA monitors HCV prevention, testing, diagnosis, and treatment (5, 6). The most recent estimates suggest that around 70,600 people (0.15% of the population) were living with chronic hepatitis C infection in England by the end of 2022, an estimated decrease of around 45% since 2015 (7).
Based on current trends, the UK is on track to achieve the WHO elimination goal of an 80% reduction in chronic HCV prevalence by 2030.
In 2015, NHS England (NHSE) established specialised hepatitis C Operational Delivery Networks (ODNs). These are responsible for delivering hepatitis C treatment in England (8). The Networks involve regional centres that manage treatment decisions and prescribing, but have a dispersed treatment model to support partnership working and local treatment access.
There are 22 NHS Operational Delivery Networks (ODNs) across England, of which 4 ODNs serve primarily London residents, these are:
- West London
- North Central London Viral Hepatitis Network
- Barts
- South Thames Hepatitis Network
Hepatitis C disproportionately affects people who inject drugs (PWID) and other groups less likely to engage with mainstream health services.
Additional services contributing to treatment and prevention of hepatitis C include:
- opt-out testing for blood borne viruses at emergency departments, introduced in April 2022
- high intensity testing and treatment programmes at prisons, introduced in September 2019
- community outreach services such as peer supporters and mobile treatment vans (9, 10)
Trends in testing
New laboratory reports
New laboratory reports cannot be used to reliably estimate new infections. Changes in the numbers diagnosed in laboratories often reflect trends in testing or reporting, rather than incidence.
The number of laboratory confirmed reports of hepatitis C in London (5,345) was its highest for the last 10 years in 2022 (Figure 1). This followed a steady decline in numbers from 2016 to 2020.
Reduced testing, reporting, and disruption to services during the coronavirus (COVID-19) pandemic in 2020 and 2021 will have resulted in fewer tests and diagnoses for those years (11, 12). The increase observed in 2022 may also reflect changes in testing, in particular the introduction of opt-out blood-borne virus testing in emergency departments in April 2022 (9).
Figure 1: Number of laboratory confirmed reports of hepatitis C in London, 2013 to 2022
Figure 1 includes individuals with a positive test for hepatitis C antibody and/or detection of hepatitis C RNA. Due to the variability in the quality of laboratory reports and the inability of current serological assays to differentiate acute from persistent infections, we are unable to estimate the actual proportion of cases with evidence of past infection or persistent infection.
Cases aged under 1 are excluded from this dataset. The data is sourced from the Second Generation Surveillance System (SGSS).
London accounted for about a third (31%) of all hepatitis C laboratory reports in England in 2022 and had the highest rate of reporting compared to other regions (Figure 2). The rate of laboratory reports of hepatitis C in London decreased steadily from 2016 to 2020, but has risen each year since 2020 (Figure 3). The rate of laboratory reports in London in 2022 (60.8 per 100,000 population) remains double the national rate (30.1).
Figure 2: Number and rate of laboratory confirmed reports of hepatitis C per 100,000 population, by region, 2022
Figure 2 includes individuals with a positive test for hepatitis C antibody and/or detection of hepatitis C RNA. Cases aged under 1 are excluded from this dataset. The left y axis: number of laboratory confirmed reports (bars). Right y axis: rate per 100,000 of laboratory confirmed reports (yellow dots). The data is sourced from SGSS.
Figure 3: Rate of laboratory reports of hepatitis C per 100,000 population, residents of London and England, 2013 to 2022
The rates in Figure 3 are calculated using mid-2021 population estimates from the Office for National Statistics (13). Cases aged under 1 are excluded from this dataset. The data is sourced from SGSS.
Of the laboratories in London, Kings College Hospital had the highest number of reports in 2022, increasing by 37% since 2021 (Figure 4). Charing Cross Hospital also reported an increase of 47% since 2021.
Figure 4: Number of reports of hepatitis C by reporting laboratory, London, 2021 to 2022
The data source for Figure 4 is SGSS.
Positivity in sentinel surveillance
Sentinel surveillance of blood borne virus testing has been running since 2002, supplementing the routine surveillance of hepatitis C (14). Data on testing for hepatitis C-specific antibodies (anti-HCV) are collected as a marker of ever having a hepatitis C infection, which does not necessarily represent current infection. Participating laboratories cover approximately 32% of the population registered with GPs. As part of the sentinel laboratory surveillance programme, 8 laboratories in London (Chelsea and Westminster Hospital, Dulwich laboratory, Ealing Hospital, North Middlesex Hospital, UKHSA reference laboratory, St Bartholomew’s Hospital, St George’s Hospital and University College Hospital) are participating and collect more detailed information about people being tested for hepatitis C.
In 2021, in London, 204,628 samples from 175,746 individuals were tested for anti-HCV antibodies. Overall, 2,085 individuals (1.2%) tested positive (Figure 6). This was lower than the proportion of individuals testing positive in England (3.0%).
When stratified by ODN, in 2021, the most anti-HCV tests were conducted by South Thames Hepatitis Network. The highest proportion of anti-HCV positive tests was observed in North Central London (4.5%), and the lowest was in West London (0.8%).
Figure 5: Number of individuals tested at sentinel surveillance sites and percentage of individuals tested positive by region and ODN, 2021
The left y axis on Figure 5 is the number of individuals tested (bars). The right y axis is the percentage of individuals who tested positive (yellow dots).
Source: Sentinel surveillance of blood borne viruses.
Site of testing
The national hepatitis team at UKHSA describe the site of hepatitis C testing for new case reports in London. Where known, from 2013 to 2022 (60%), the greatest number of reports came from hospitals (38%), followed by drug services (17%), general practice (17%), and sexual health (16%) (Figure 6).
Figure 6: Number of laboratory confirmed reports of hepatitis C in London, 2013 to 2022, by site of testing
Groups at increased risk
People who inject drugs (PWID)
PWID are the group most affected by hepatitis C in the UK (5). Where risk factors have been disclosed, injecting drug use has been cited as a risk factor in more than 90% of all HCV laboratory reports in the UK (15).
UKHSA’s Unlinked Anonymous Monitoring (UAM) Survey of PWID measures prevalence of hepatitis C antibodies in current and former PWID in England, Wales, and Northern Ireland (16).
Recruitment to the UAM Survey was heavily impacted by the COVID-19 pandemic. UAM Survey data for 2020 and 2021 have been combined for most geographies as participant numbers were too small for them to be presented separately. There were also changes in the geographic and demographic profile of those taking part in the survey in 2020 and 2021 which should be considered when interpreting the data.
In London, the survey estimated the prevalence of antibodies to HCV in PWID as 64% in 2020/21, above the England prevalence (58%) and slightly higher than in London in 2019 (59%) (Figure 7) (16).
The prevalence of HCV RNA amongst PWID who tested positive for anti-HCV antibodies was 24% for London in 2020/21, a decrease of 5 percentage points since 2019, and a decrease of 41 percentage points since 2016 (Figure 8). This was slightly lower than the combined England value for 2020/21 (27%).
Figure 7: Number of samples tested and anti-HCV prevalence, London, 2012 to 2020/21
The left y axis on Figure 7 is the number of samples (bars). The right y axis is anti-HCV prevalence (trend line).
Source: Unlinked Anonymous Monitoring Survey of HIV and Hepatitis in People Who Inject Drugs.
Figure 8: Number of samples tested and HCV RNA prevalence in people who inject drugs who are anti-HVC positive in London, 2012 to 2020/21
The left y axis shows the number of samples (bars). The right y axis shows HCV RNA prevalence (trend line).
Source: Unlinked Anonymous Monitoring Survey of HIV and Hepatitis in People Who Inject Drugs.
Needle and syringe sharing and use of needle and syringe programmes
Needle and syringe sharing (either receiving or passing on a used needle or syringe) is an important risk factor for hepatitis C transmission. Overall, the level of needle and syringe sharing reported by those currently injecting psychoactive drugs has increased across England, Wales, and Northern Ireland in the past decade, from 14% in 2012 to 22% in 2021 (16).
However, in London, the level of needle and syringe sharing has slightly decreased from 16% in 2012 to 13% in 2020/21. The proportion of current injectors reporting either direct or indirect sharing (sharing of needles or syringes, or mixing containers or filters) in the past month was 29% in 2020/21. This was lower than the England prevalence (40% for direct and indirect sharing) (Figure 9).
In 2021, in England, Wales, and Northern Ireland, 89% of PWID who participated in the UAM Survey had ever accessed a needle exchange (16).
Adequate provision of injecting equipment is important to reduce sharing and re-use of equipment. Needle and syringe provision (NSP) is considered ‘adequate’ when the reported number of needles and syringes received met or exceeded the number of times the individual injected.
In 2021, the proportion of PWID in the UK reporting adequate needle/ syringe provision was sub-optimal; around 66% of PWID who had injected during the preceding month reported adequate needle/syringe provision in England, Wales, and Northern Ireland (15).
Figure 9: Level of direct and indirect sharing (see definitions of direct and indirect sharing below) of injecting equipment amongst people who inject drugs, London, 2012 to 2020/21
Sharing of needles and syringes among those who had last injected in the 4 weeks preceding participation in the survey.
Sharing of needles and syringes, mixing containers, or filters among those who had last injected in the 4 weeks preceding participation in the survey.
Source: Unlinked Anonymous Monitoring Survey of HIV and Hepatitis in People Who Inject.
Hepatitis C testing uptake among people who inject drugs
The proportion of PWID who report uptake of voluntary confidential testing for hepatitis C has changed little across the UK in the last decade (at 85% in 2012 and 86% in 2021) (16). This uptake of testing among PWID was higher in London than in the UK overall and has also changed little in the last decade, at 90% in 2012 and 91% in 2020/21 (Figure 10).
Figure 10: Hepatitis C test uptake among people who inject drugs, London, 2012 to 2021
Source: Unlinked Anonymous Monitoring Survey of HIV and Hepatitis in People Who Inject Drugs
Ethnicity
For new laboratory reports of hepatitis C in London from 2018 to 2022, where information on ethnicity was available (35%), the most commonly reported ethnic group was White (69%), followed by Asian (15%), Black (10%), then mixed (6%) (Figure 11).
Figure 11: Number of new laboratory confirmed reports of hepatitis C by ethnic group in London, 2018 to 2022
Age and gender
Among data on new laboratory reports, males accounted for 68% of those testing positive for hepatitis C between 2018 and 2022, most frequently aged between 35 and 54 years (Figure 12).
Figure 12: Age-group and gender of new laboratory confirmed reports of hepatitis C in London, 2018 to 2022
Source: SGSS
Young adults
As most new infections are acquired via injecting drug use at a relatively young age, the prevalence of infection in young adults can be used as a proxy measure of incidence. The number of new laboratory confirmed HCV cases aged 15 to 24 years, in London, was higher in 2022 than for the previous 5 years (Figure 13).
Figure 13: Number of new laboratory confirmed reports of hepatitis C aged 15 to 24 years, in London, 2013 to 2022
Mother to child transmission
The number of hepatitis C cases associated with mother to child transmission can be estimated by describing the number of cases amongst children. There were 5 cases aged over 1 year and under 15 years in 2022, a decrease since 2013 (14 cases) (Figure 14). Children aged under 1 were excluded because they may still have circulating anti-HCV antibodies obtained from their mother without being infected themselves (18).
Figure 14: Number of new laboratory confirmed reports of hepatitis C aged 1 to 14 years, in London, 2013 to 2022
Other risk factors
General risk factors
A risk factor for each case is described by UKHSA based on clinical notes and the setting of test. Where this information is available (15%), from 2013 to 2022, the most common risk factor cited was PWID (79%), followed by prison (20%) (Figure 15).
Figure 15: Number of new laboratory confirmed reports of hepatitis C by risk factor, London, 2013 to 2022
Gay, bisexual, and other men who have sex with men (GBMSM)
An increase in hepatitis C infection amongst GBMSM has been described in recent years (19, 20). There is no well-completed data source currently available describing sexual orientation of hepatitis C cases. However, the number of hepatitis C cases who may be GBMSM can be estimated from combining the number of cases diagnosed at sexual health services with their age and gender. Overall, where age, sex, and testing site was available (60%), 7% (239 of 3,231) of new laboratory confirmed cases in London in 2022 were adult males (aged at least 18 years) tested at sexual health services (source: SGSS).
Homelessness
The homeless population is known to be disproportionately affected by hepatitis C (21). In London, in 2022, 10% (531 of 5,345) of new laboratory confirmed cases reported that they had ever experienced homelessness (source: SGSS). Testing at community outreach services is more likely to be accessed by individuals experiencing homelessness.
In London in 2022, for new laboratory confirmed cases where testing site information was available, 3% (118 of 3,596) were tested at community outreach services (source: SGSS).
Deprivation
Hepatitis C disproportionately affects deprived communities in England (22).
Deprivation can be described using deprivation deciles, which are calculated by ranking all of the small areas in England, from most deprived to least deprived, and dividing them into 10 equal groups.
These range from the most deprived 10% to the least deprived 10% of small areas nationally. The deprivation decile of each new laboratory report of hepatitis C in London was estimated by obtaining the small area corresponding to the case’s postcode, and looking up the national deprivation decile of that area.
The deprivation decile of each small area in England in 2019 is available from the Ministry of Housing, Communities and Local Government (23). It is important to note that this does not include individuals without a residential postcode, for example, if the case did not provide this information or if they are homeless, and could therefore underestimate rates in the most deprived deciles (23).
The rate of hepatitis C reports was calculated as the number of hepatitis C reports in London divided by the number of individuals in London, stratified by national deprivation decile. The number of individuals in London in each deprivation decile was estimated by obtaining population estimates for each small area in London, looking up the national deprivation decile of each small area, and summing the populations of small areas in each decile.
Deprivation decile could be estimated for 43% (2,295) of new laboratory reports in London in 2022. The rate of hepatitis C reports was highest in the most deprived decile of London (53 reports per 100,000 persons) and lowest in the least deprived decile (10 per 100,000) (Figure 16).
Figure 16: Rate of new laboratory confirmed reports of hepatitis C in each deprivation decile, London, 2022 [Note 1]
Note 1: National deprivation deciles of hepatitis C reports in London were estimated from the case’s postcode using national deprivation data from the Ministry of Housing, Communities and Local Government from 2019 (23).
Morbidity and mortality
Hospital admissions for hepatitis C
Hospital admissions data for individuals with a diagnosis code for hepatitis C were not available for 2022 at the time of writing.
Transplants
Liver transplant data are available for the 7 centres performing liver transplantation in the UK from the UK Transplant Registry at NHS Blood & Transplant (24). Two of the 7 centres are in London (Royal Free Hospital in Camden and King’s College Hospital in Lambeth). Note that each year period runs from 1 April to 31 March (that is, 2021 runs from 1 April 2021 to 31 March 2022).
The number of liver transplant recipients with a positive HCV status has decreased from 2014 to 2021, in transplant centres in London and across the UK (Figure 17).
Figure 17: Number of liver transplant recipients with positive HCV status, 2014 to 2021
Source: NHS Blood and Transplant (24)
Deaths from hepatitis C
The under-75 crude mortality rate from hepatitis C related end-stage liver disease (ESLD) or hepatocellular carcinoma (HCC) in individuals with hepatitis C mentioned on their death certificate has decreased in London from 0.75 per 100,000 persons in 2013 to 0.55 per 100,000 persons in 2021 (Figure 18) (25). The mortality rate in England has remained lower than the mortality rate in London over this period, and was 0.47 per 100,000 persons in 2021. This meets the impact target set out by WHO in 2021 of equal to or less than 2 HCV-related deaths per 100,000 persons by 2030 (3).
Figure 18: Mortality rate from hepatitis C related end-stage liver disease or hepatocellular carcinoma in London, 2013 to 2021
Treatment
The NHS England Registry was commissioned by NHS England in 2017 from the Arden and Greater East Midlands Commissioning Support Unit to capture more detailed information for patients. The Hepatitis C treatment monitoring in England report summarises the data held within the registry and treatment outcome system up to the end of April 2018.
ODN-tailored hepatitis C testing and treatment dashboards are now available for each of the 22 ODNs. The dashboard summarises testing, diagnosis and treatment data at ODN level down to the level of individual service providers. This is used to support resource allocation and monitoring of local case finding and linkage to care activities.
The dashboard collates data from laboratory surveillance systems, the NHS England Hepatitis C patient treatment monitoring and outcome system, and the national drug treatment monitoring system (NDTMS). The data is not currently available publicly but is provided to ODN leads or data managers. For more information please contact your local Health Protection Team or Field Service.
In England, between 2016 and 2021, 73% of diagnosed patients with chronic hepatitis C initiated treatment, and 72% of those who initiated treatment achieved a sustained viral response (SVR, HCV RNA negative). In 2022, 963 patients diagnosed with HCV infection initiated treatment.
Treatment outcomes are described for new laboratory reports of hepatitis C in London (8). Where this information was available (from a sample size of 787, 82%), 72% of cases in London in 2022 achieved a sustained viral response 12 weeks after completion of treatment (SVR 12) (Figure 19). The proportion of cases who achieved SVR 12 appears to have declined from 2016 to 2022 (72%, down from 92%), but there has been an increase in missing outcomes over this time, while relapse rates have remained stable (Figure 19).
Figure 19: Treatment outcomes of new laboratory reports of hepatitis C, London, 2013 to 2022
Source: UKHSA HCV dashboard (8)
Reinfections
The number of reinfections amongst treated cases of hepatitis C has been estimated in the hepatitis C dashboard produced by UKHSA (8). Reinfection was defined as:
-
a positive HCV RNA test at least 7 months after starting treatment and having achieved a sustained virological response (SVR) during treatment
-
a negative HCV RNA test at least 6 months after starting treatment, followed by a positive HCV RNA test at least one month after the negative HCV RNA test
-
a subsequent treatment date 7 months after the previous treatment having achieved an SVR
From 2015 to 2022 in London, there were 326 reinfections out of 15,745 treated HCV infections (2.1%) (8). This was lower than the England median (2.8%). The percentage of reinfections in London varied by ODN, and was lowest in Barts (0.8%) and highest in West London (4.2%) (Figure 20).
Figure 20: Percentage of reinfections amongst treated cases in London, by ODN, 2015 to 2022
Source: UKHSA HCV dashboard (8)
Discussion
In 2022, London accounted for 31% of laboratory hepatitis C case reports in England, and after a steady downward trend from 2016 to 2020 numbers have risen each year since 2020.
This increase could reflect increased testing and reporting, including the opt-out testing scheme at emergency departments, following a reduction in testing during the COVID-19 pandemic.
Importantly, as the number of new laboratory reports is susceptible to changes in testing and reporting, it cannot be used to reliably estimate new infections.
There was significant variation in rates of HCV laboratory reports between individual local authorities in London in 2022. This analysis should be interpreted with caution, as cases are often assigned to the local authority of the reporting laboratory where there is no known residential address.
Using data from sentinal surveillance, when stratified by ODN, in 2021 the most anti-HCV tests were conducted by Thames Hepatitis Network. The ODN with the highest proportion of ant-HCV positive tests was North Central London with 4.5% positivity, and the lowest was in West London (0.8%). Variance in proportions of reported HCV positivity by ODN could be due to differences in testing and case finding as well as population differences.
Laboratory case reports can also be stratified by the site of testing. 60% of reports from 2013 to 2022 included data on testing site, with the greatest number of reports coming from:
- hospitals (38%)
- drug services (17%)
- general practice (17%)
- sexual health (16%)
This data could be used to infer information about demographics of people most at risk of HCV infection.
There are particular characteristics associated with a higher chance of being infected with HCV.
The biggest risk factor in the UK remains injecting drug use, cited as a risk factor in more than 90% of laboratory reported cases where risk factors are disclosed (15). In London in 2020/21, UKHSA’s Unlinked Anonymous Monitoring (UAM) Survey of PWID estimated the prevalence of anti-HCV in PWID to have increased from 59% in 2019 to 64% in 2020/21.
The prevalence of HCV RNA amongst PWID who tested positive for anti-HCV antibodies was estimated at 24% for London in 2020/21, continuing a steady downward trend since 2016. The increased prevalence of HCV antibody positive results but reduced prevalence of HCV RNA results amongst PWID in London in 2020/21 could indicate a higher rate of people previously exposed but no longer infected with the virus, due to increased levels of treatment (17).
Caution should be used when interpreting this data due to the data being combined for 2020 and 2021, and changes in the geographic and demographic profile of survey participants.
Another demographic group that has seen an increase in new laboratory confirmed HCV cases in London in 2022 is 15 to 24-year-olds. This is a concern as infections in young adults is a proxy measure of incidence. Further investigation into the data, population and service (testing) factors behind this increase in cases is therefore warranted.
People with hepatitis C often experience other social risk factors, such as detention and homelessness. HCV disproportionately impacts the most deprived communities in England, with new HCV laboratory reports being highest in the most deprived decile in London in 2022 and lowest in the least deprived decile. These factors mean identifying and treating people with hepatitis C infection can be challenging, and testing and treatment services need to be delivered in a way that meets the needs of these groups.
Outcomes for people who are infected with HCV have changed over time. The impact targets set out by the WHO to eliminate hepatitis C as a public health threat aim to reduce HCV-related mortality by 65% relative to a 2015 baseline by 2030 (3). As of 2023, the UK has seen a 31% reduction in mortality related to HCV, surpassing the 10% target for 2020. In London, the HCV mortality rate has decreased from 0.7 per 100,000 persons in 2015 to 0.55 per 100,000 persons in 2021. This surpasses the WHO guidance of an annual absolute HCV-related mortality rate equal to or less than 2 per 100,000 population.
Outcomes for people initiating treatment for HCV are recorded in the UK. In London in 2022, 72% of people with HCV who had initiated treatment achieved SVR-12, a sustained viral response (HCV-RNA negative) for 12 weeks after completion of treatment. This figure has decreased in recent years, from 92% of people achieving SVR-12 in 2016, although this may be due to increasing absence of data as relapse rates have not significantly changed.
Appendix 1. Data sources
HCV Testing and treatment dashboard (August 2023 pan-London)
Dashboard produced quarterly by UKHSA National Infection Service (NIS) to inform local targeted testing and case finding initiatives, and to support local monitoring of progress towards elimination goals.
Second Generation Surveillance System (SGSS)
UKHSA’s laboratory reporting system.
NHS Blood and Transplant
The annual report on liver transplantation contains key data on liver transplantation in the UK, including demographic characteristics of donors and transplant recipients.
Sentinel Surveillance of blood borne viruses
There are 7 participating centres in London - UKHSA Colindale, North Middlesex Hospital, St Barts and the London Hospital, King’s College Hospital, St George’s Hospital, Chelsea and Westminster Hospital and University College Hospital.
Limitations of the data include:
- some duplication of individual patients
- exclusion of dried blood spot, oral fluid, reference testing
- exclusion of testing from hospitals referring all samples that do not have the original location identified
Individuals aged less than one year are excluded because positive tests in this group may reflect the presence of passively-acquired maternal antibody rather than true infection.
Sentinel surveillance of blood borne virus testing in England: 2021
Unlinked Anonymised Monitoring Survey of People Who Inject Drugs
This survey measures the changing prevalence of hepatitis C in current and former PWID who are in contact with 60 specialist drug agencies (eg needle exchange services and treatment centres) in England, Wales and Northern Ireland. The programme also monitors levels of risk and protective behaviours among PWID.
People who inject drugs: HIV and viral hepatitis monitoring
Appendix 2. Hepatitis C resources
Hepatitis C in the UK and England
Latest PHE hepatitis C virus (HCV) reports, slide sets and infographics for England and the UK.
Hepatitis C in England and the UK
Liver Disease Profiles
The liver disease profiles produced annually contain data for Upper Tier Local Authorities, former Government Office regions, England and Lower Tier Local Authorities and provide key facts, prevention strategies and links to further resources.
People who inject drugs: HIV and viral hepatitis monitoring
Data tables and commentary for the unlinked anonymous monitoring surveys of infections and risk among people who inject drugs (PWID).
People who inject drugs: HIV and viral hepatitis monitoring
RCGP Learning - Hepatitis C: Enhancing Prevention, Testing and Care
This course is aimed at improving knowledge of everyone who works in drug treatment, or with drug users, and is specifically aimed at those who have a non-clinical or non-medical background. It provides an understanding of hepatitis C and its prevalence. It also gives an overview of the liver and its function, and the stages and natural history of untreated hepatitis C liver disease.
Summary of Hepatitis C: Enhancing Prevention, Testing and Care, RCGP Learning
National Drug Treatment Monitoring System (NDTMS) Data Recording
Information about current levels of testing in local drug services is available to local authority commissioners and providers on the restricted section of the NDTMS wesbite.
Acknowledgements
UKHSA
Ruth Simmons, Blood Safety, Hepatitis, Sexually Transmitted Infections (STIs) and HIV Division
Sally MacVinish, North London Health Protection Team, Health Protection Operations
External bodies
Sentinel surveillance reporting laboratories (Chelsea and Westminster hospital, Dulwich laboratory, Ealing Hospital, North Middlesex Hospital, UKHSA reference laboratory, St Bartholomew’s Hospital, St George’s Hospital and University College Hospital)
Frontline testing and treatment services (drug services, sexual health services, community outreach, find and treat)
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