Written evidence submitted by The Hepatitis C Trust


Background to The Hepatitis C Trust and reason for submission


The Hepatitis C Trust is a registered charity that was founded in 2001 and operates across the UK. It is a patient-led organisation and key stakeholder in the present NHS England programme to eliminate hepatitis C. Most of our board, staff and volunteers have had hepatitis C and been cured following treatment. The Hepatitis C Trust’s work includes peer support programmes; training sessions for health professionals; a helpline offering support and advice; and supporting relevant policy and parliamentary activity.


We are submitting to this call for evidence to outline the potential implications of Integrated Care Systems for the NHS England goal to eliminate hepatitis C by 2025.


Background on hepatitis C in England


Hepatitis C is a blood-borne virus that can cause a range of health impacts, but primarily affects the liver. People can live for many years without symptoms and untreated cases can cause fatal cirrhosis and liver cancer. Hepatitis C is transmitted through blood-to-blood contact, with the majority of cases arising through the sharing of drug injecting paraphernalia, though there are other potential transmission routes, including overseas medical care, tattooing and receipt of a blood transfusion in the UK prior to 1991 (the latter is currently the subject of the ongoing Infected Blood Inquiry, ordered by the UK Government). Hepatitis C disproportionately affects disadvantaged and marginalised communities, including injecting drug users, homeless people, prisoners, and certain migrant communities. This makes tackling hepatitis C crucial to the aim of promoting population health and confronting inequalities in outcomes, experience, and access in the health system.


Hepatitis C is preventable, treatable and curable. Since 2015, direct-acting antiviral (DAA) treatments have been available through the NHS. DAA treatments are a significant improvement on the old, interferon-based treatment, with short treatment durations, no significant side effects and cure rates of over 95%. Between 2005 and 2014, deaths from hepatitis C-related liver disease had more than doubled, but in the last seven years the availability of DAA treatments has led to a 35% fall in deaths from hepatitis C-related liver disease. However, there are still 81,000 people in England estimated to have a current hepatitis C infection, with the majority remaining undiagnosed.[1]


UK Government commitments and the NHS England elimination deal


In May 2016, the UK joined 193 other member states at the 69th World Health Assembly in committing to eliminate viral hepatitis C globally by 2030 and in January 2018, NHS England announced its ambition to eliminate hepatitis C in England by 2025, five years ahead of the World Health Organization target. This commitment included signing up to targets for an 80% reduction in incident (new) chronic hepatitis C infections and a 65% reduction in mortality from hepatitis C. Hepatitis C is unique among public health issues – we can eliminate it within a relatively short amount of time, provided there is commitment and strategic coordination by the UK Government and health bodies.


In April 2019, NHS England announced a “first of its kind” deal to find and cure tens of thousands more people with hepatitis C, with the aim of England becoming the first country in the world to eliminate the virus. As part of the NHS Long Term Plan’s focus on reducing health inequalities, the deal enabled NHS England, three pharmaceutical companies and other partners to work together to proactively identify and treat patients living with an undiagnosed infection of hepatitis C. A contract was negotiated between NHS England and three companies who produce DAAs (Gilead, MSD and AbbVie). For the duration of the deal drug prices are fixed, creating a saving for the NHS against what the drugs would cost at market price without the deal, and partners have also developed programmes to identify the many thousands of as-yet undiagnosed people with hepatitis C in England. The deal was initially slated to last three years, but was subsequently extended to five years, ending in April 2024.


Under this deal, a wide array of partners including NHS England, NHS Hepatitis C Operational Delivery Networks (ODNs), NHS Trusts, pharmaceutical partners, drug and alcohol services, the HM Prison and Probation Service, primary care providers, and voluntary sector organisations such as The Hepatitis C Trust have been able to work together to find and treat people with hepatitis C, who are often far from services. As a result of the deal, elimination by NHS England’s 2025 goal is a real prospect. With deaths from hepatitis C-related liver disease down 35% and overall hepatitis C prevalence down 37% in England in recent years, the Department of Health and Social Care and NHS England’s approach to the virus has been recognised by the World Health Organization as providing an example to the rest of the world.


However, data also shows that improvement in terms of diagnosing and treating people with hepatitis C has been undermined by a lack of progress in reducing new infections. UK Health Security Agency (UKHSA) reports have consistently noted that the rate of new infections has not fallen.[2] Similarly, a recent report by The Hepatitis C Trust and HCV Action found that hepatitis C reinfection is a concern in many parts of the UK and that ongoing reinfections suggest that there are still unknown groups who are not being found, tested, and treated, and who are transmitting hepatitis C by blood-to-blood contact.[3] This highlights the need for increased prioritisation of prevention measures, such as needle and syringe programmes (NSP) and Opioid Substitution Therapy (OST), both of which have been shown to reduce hepatitis C infections. Drug services and local authorities require support to ensure they are informed and resourced for their role in preventing hepatitis C infections.


The implications of Integrated Care Systems for the commissioning of hepatitis C treatment and health inequalities


Responsibility for commissioning hepatitis C treatment currently sits primarily with NHS England Specialised Commissioning, and since 2014 NHS England decisions have enabled those infected with hepatitis C to access DAA treatments on the NHS. In 2014 NHS England’s Clinical Priorities Advisory Group (CPAG) recommended that Sofosbuvir be funded for those patients at significant risk of mortality, for example, even before NICE approval of the drug.[4] However, access to drugs was expanded significantly with the advent of the elimination deal in 2019. Prior to the elimination deal, though NHS England directly funded treatment from a ring-fenced budget, additional funding was not being invested in additional case-finding and diagnoses. This led to one witness telling an inquiry by the All-Party Parliamentary Group on Liver Health that “When you speak to specialist commissioners in NHS England, they say ‘our job is not to commission services, our job is to fund drugs’. But if you can’t deliver the drugs adequately then it’s pointless funding the drugs.” In the inquiry report in 2018, the APPG commented that this represented a “clear barrier to efforts to eliminate hepatitis C is caused by the limitations of the commissioning system, despite conditions like treatment costs and ease of treatment now being better than ever before”. Additionally, prior to the deal, ODNs were subject to a maximum cap on how many people they could provide DAA treatments to, but this cap was lifted when the elimination deal was implemented.[5]


However, the current strategic procurement deal comes to an end at the end of March 2024. NHS England programme leaders are considering other potential options for replacement, but nothing has been confirmed as of yet. It has also not yet been publicly confirmed at what point responsibility for specialised hepatitis C commissioning will shift to ICSs, though there have been indications from NHS England that it may not be among those services considered immediately suitable for greater ICS leadership until at least April 2024.

The Health and Care Act 2022 gives the NHS “the opportunity to reconnect the commissioning of whole pathways of care, through delegation of NHS England and NHS Improvement’s responsibilities for commissioning some specialised services to ICSs”.[6] The Hepatitis C Trust does note that in theory, if hepatitis C commissioning becomes one of the conditions that moves to become the responsibility of ICSs in this way, the reintegration of commissioning responsibilities through ICSs could strengthen overall care pathways for people affected by hepatitis C, who often come from marginalised backgrounds and have co-morbidities such as drug use and mental health.


NHS England have noted that for HIV - a blood borne-virus with some overlaps with hepatitis C in terms of case-finding, prevention and treatment needs it is hoped that the advent of Integrated Care Boards (ICBs) and the inclusion of local authorities via Integrated Care Partnerships (ICPs) will mean that inpatient and outpatient treatment (currently directly commissioned by NHS England and NHS Improvement) might be more effectively aligned with prevention (commissioned by local authorities) and with HIV testing (commissioned by CCGs). NHS England also hope these types of collaborations will help to ensure greater integration in the design of services, informed by insight and data on the needs of local communities and an understanding of how to reduce inequalities that may exist.[7] Such benefits could also be expected to apply to ICSs adopting responsibility for hepatitis C, which has a similar mix of commissioning responsibilities.


However, we would also underline that the restructure and decentralisation entailed by the shift to ICSs – in combination with change expected in the central NHS England deal as it reaches the end of its current life – could represent a risk of fragmentation of care and loss of momentum towards the strategic aim to eliminate hepatitis C or maintain it thereafter, towards which NHS England and partners have invested heavily and made great strides. NHS England and NHS Improvement has indicated that it will remain the accountable commissioner for specialised services and ICBs will still be required to commission against nationally set service specifications and clinical access policies, in order to not to lose the benefits of standardisation and universal access expectations achieved under the present system. But it will also be vital that ICS leaders be made aware of the public health threat that hepatitis C continues to represent until and even after it is eliminated; of the learnings that have been made in recent years about the best ways to find and treat those at risk of hepatitis C; and of the continued preventive work and fast response to outbreaks that will be necessary to ensure the elimination is maintained thereafter.


Finally, ICPs are intended to include representatives from the ICB and the local authorities within their area, but also other partners such as NHS providers, public health, social care, housing services, and voluntary, community and social enterprise (VCSE) organisations.[8] In terms of the goal to achieve and maintain hepatitis C elimination, ICPs should incorporate the full range of partners that have been part of the local functioning of the elimination deal, to draw on and retain the relationships that have been built in the drive for elimination between NHS organisations, voluntary sector organisations like The Hepatitis C Trust, drug service providers, primary care (including both GP practices and community pharmacies), prison and probation services, and the Fast Track Cities Initiative, among others.


October 2022


[1] UK Health Security Agency (2020) ‘Hepatitis C in England 2022: Working to eliminate hepatitis C as a public health problem’. Available at: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/1057262/HCV-in-England-2022-short-report.pdf

[2] UK Health Security Agency (2020) ‘Hepatitis C in England 2022: Working to eliminate hepatitis C as a public health problem’. Available at: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/1057262/HCV-in-England-2022-short-report.pdf

[3] The Hepatitis C Trust and HCV Action (2022) ‘Reframing Reinfection’. Available at: http://www.hepctrust.org.uk/sites/default/files/Reframing%20Reinfection.pdf

[4] NHS England (2014) ‘NHS England agrees funding for life-saving hepatitis C drug’. Available at: https://www.england.nhs.uk/2014/04/hepatitis-c/

[5] All-Party Parliamentary Group on Liver Health (2018) ‘Eliminating Hepatitis C in England: All-Party Parliamentary Group on Liver Health Inquiry’. Available at: http://www.hepctrust.org.uk/sites/default/files/Eliminating%20Hep%20C%20APPG.pdf

[6] NHS England (2022) ‘Roadmap for integrating specialised services within Integrated Care Systems’. Available at: https://www.england.nhs.uk/wp-content/uploads/2022/05/PAR1440-specialised-commissioning-roadmap-addendum-may-2022.pdf

[7] NHS England (2022) ‘Roadmap for integrating specialised services within Integrated Care Systems’. Available at: https://www.england.nhs.uk/wp-content/uploads/2022/05/PAR1440-specialised-commissioning-roadmap-addendum-may-2022.pdf

[8] The King’s Fund (2022) ‘Integrated care systems: how will they work under the Health and Care Act’. Available at: https://www.kingsfund.org.uk/audio-video/integrated-care-systems-health-and-care-act