A government debate on the elimination of Hepatitis C took place in Parliament today (12 June). The debate discussed the UK’s progress towards global targets set by the World Health Organisation (WHO) to eliminate hepatitis C as a major public health threat by 2030.
In January 2018, NHS England announced its ambition to eliminate hepatitis C by 2025, five years ahead of the World Health Organization target. However, expert contributors to an inquiry on hepatitis C elimination held by the APPG on Liver Health agreed that given current testing and treatment numbers, England is not in a position to deliver on this ambition, with even the 2030 Word Health Organization elimination goal posing a significant challenge.
Judi Rhys, Chief Executive of the British Liver Trust, said: “We are delighted that NHS England are playing a leading role in tackling hepatitis C and eliminating this deadly virus. A key challenge will be the fact that hep C often has no symptoms in the early stages and it is thought that less than half of those living with the virus have been diagnosed. It is therefore vital that anyone who is at risk asks to be tested.
“Many people who are undiagnosed are not aware that they may be at risk. We would urge anyone who has ever dabbled in drugs (even if it was many years ago); had unprotected sex with someone who may have been infected; had a tattoo or received healthcare in a country with a high prevalence of the virus or who may be have been put at risk in their workplace, for example from a needlestick injury, to get tested to be sure. Further information is available on our website here.”
As most people historically infected with hepatitis C and in touch with services have now been treated, the greatest challenge is finding undiagnosed patients and re-engaging those previously diagnosed into care to ensure ambitious treatment target numbers are met. This will become more challenging as time goes on, due to the need to find increasingly hard-to-reach groups who are not in touch with services
Ambitious action must be taken to increase the numbers of people tested, diagnosed, and treated.
British Liver Trust back recommendations by The Hepatitis C Trust and the APPG on Liver Health that any new hepatitis C treatment funding deal resulting from ongoing negotiations between NHS England and industry should be accompanied by a comprehensive and strategic national elimination plan to ensure it is implemented effectively.
Background to the debate
In late 2017, the All-Party Parliamentary Group on Liver Health conducted an inquiry into the elimination of hepatitis C in England. Three oral evidence sessions were held, featuring a range of expert stakeholders answering questions from APPG members, and written evidence was received from a range of individuals and organisations. Based on this evidence, The Hepatitis C Trust (as the secretariat for the APPG) produced the report ‘Eliminating Hepatitis C in England’. The report outlines the findings from the inquiry and makes a series of recommendations for further action to ensure England meets its commitment to eliminate hepatitis C by 2030 at the latest.
The report was launched at a parliamentary event on 20th March attended by MPs and peers, former and current patients, healthcare professionals, third sector workers, civil servants and industry representatives.
The purpose of this Westminster Hall debate is to highlight the findings of the report, particularly the urgent need for action to ensure England fulfils its ambition to eliminate hepatitis C by 2025, and the need for strategic co-ordination of action in a fragmented care and commissioning environment through a national elimination strategy.
Key talking points
- Awareness of hepatitis C has been gradually improving. However, low awareness and stigma remain a challenge to ensuring as many people as possible are tested, diagnosed, and treated for hepatitis C.
- There is still often low awareness of transmission risks among at-risk groups.
- Many people underestimate the seriousness of the condition and the urgency of getting treated.
- Among those who are aware of the condition, there is still too often a lack of awareness of the new treatments, with lingering fears about the side-effects of the old treatments persisting.
- Stigma has decreased over time, but is still reported as a serious challenge, and can act as a barrier to people presenting for testing or seeking treatment.
- Local and national awareness-raising publicity campaigns should be carried out, ensuring at-risk groups are aware of transmission risks and the importance of testing and treatment.
- A highly effective way of raising awareness among at-risk groups is peer-to-peer messaging programmes, the provision of which could be increased in settings such as drug services and prisons.
- Awareness should be increased among primary care professionals through targeted testing initiatives in primary care and additional resources and support for primary care workers.
- To achieve elimination of hepatitis C, we must ensure that numbers of new infections are falling, so that increased testing and treatment initiatives lead to a decline in overall prevalence.
- Better awareness of hepatitis C among at-risk groups is one way of preventing new infections. Substance misuse services and sexual health clinics have a crucial role to play, yet participants in the inquiry were concerned that reductions in funding for such services put this support at risk.
- As well as better awareness, harm reduction among at-risk groups is an important method of prevention. Access to clean injecting equipment is vital for preventing transmission among people who inject drugs, yet current provision is insufficient and must be increased.
- Knowledge of transmission risks should be increased through peer programmes and improved support from well-trained and informed service staff, and behavioural interventions to reduce reinfection, which remains a serious challenge to elimination, must be prioritised.
- There are also new and innovative approaches to preventing new infections which should be implemented. For example, the report highlights the ‘treatment as prevention’ approach, which seeks to treat large numbers of actively injecting drug users and others currently engaged in the riskiest behaviours in an attempt to prevent as many onward transmissions of the virus as possible.
Testing and Diagnosis
- With 40-50% of people with hepatitis C still undiagnosed, testing and diagnosis levels must be increased.
- With many of those diagnosed and in touch with services having now been treated, the increasingly pressing challenge is to find those who are undiagnosed and to re-engage those already diagnosed but lost to services.
- Testing needs to become routine in substance misuse services, sexual health clinics and prisons, and needs to increase in primary care and community settings, such as hostels, daycentres, police custody and mosques.
- We must also seize opportunities where people are already having blood tests to test for hepatitis C, such as alongside tests for HIV and when bloods are taken in A&E.
Linkage to Care
- It is essential that people who have been diagnosed are quickly referred into treatment. The time between diagnosis and beginning treatment that poses the greatest risk of patients dropping out of the care pathway.
- To allow for quicker referrals, we need to simplify the process of linking people into care.
- Currently, some secondary care services will only accept referrals for treatment from GPs. The APPG on Liver Health recommends that referrals for hepatitis C treatment should be accepted from any service where someone might receive a test and be diagnosed.
- Treatment must also be available immediately for people following diagnosis, to avoid the risk of patients dropping out of contact with services. We must eliminate the need for additional tests and unnecessary appointments.
- We should work towards better data-sharing between services, to ensure patients who have been diagnosed do not get lost to follow-up. For example, if someone who has been diagnosed in prison is released before having accessed treatment, they must be referred to a service where they can access treatment.
- Many GPs and services have records of people who were diagnosed in the past but have never received treatment and follow-up contact should be made with these people to encourage them to access treatment.
- New hepatitis C treatments which first became available in 2014 have been an extraordinary breakthrough. With short durations, high cure rates and very few side-effects, they have offered the opportunity to cure significantly more people.
- It is expected that the recently-announced negotiations between NHS England and industry will remove any restrictions on access to treatment.
- However, it is important that targets for the minimum number of people to be treated in a year are retained and made more ambitious.
- The current annual target for treatment numbers is 12,500 and we would like to see this rise to at least 20,000 new treatment initiations per year, which is essential if elimination is to be achieved by NHS England’s target of 2025.
- Indeed, it may actually be more pragmatic to adopt an even greater target initially, tailing off to lower targets in future years. This would reflect the assumption that as overall prevalence falls and approaches very low numbers, those still living with hepatitis C will be harder to reach. Higher treatment target numbers in the earlier years of the strategy would also contribute to fewer transmissions of the virus and ensure more savings sooner.
- Universal access to treatment must also extend to people who are reinfected.
- In order to make treatment as accessible as possible, the APPG on Liver Health recommends that treatment is made more readily available in community settings, to ensure it is as accessible as possible for patients, some of whom may have difficulty accessing secondary care services.
- Settings where treatment should be more readily available include GP clinics, pharmacies, homeless hostels, substance misuse services and sexual health clinics and prisons.
- The hepatitis C landscape has changed dramatically in recent years, with the availability of new curative treatments which have now decreased in cost significantly
- Key stakeholders have had concerns about the way these new treatments were initially rolled out by NHS England, with restrictions placed on the number of patients able to access them each year in England.
- NHS England has recently entered negotiations with industry to develop a new funding model for hepatitis C, which we expect to guarantee access to treatment without restriction.
- This is a very positive development and is an opportunity to make real progress towards elimination in England.
- The APPG on Liver Health recommends that the resulting deal should include effective mechanisms to ensure funds are distributed equitably across different geographies and patient populations so that no one is left behind.
- The APPG on Liver Health and The Hepatitis C Trust also believes that any new funding deal must be accompanied by a comprehensive and strategic plan to ensure it is implemented effectively.
- As part of an elimination strategy, we need to see ambitious targets on a local, regional and national level, to incentivise and drive increases in testing and treatment, and rigorous monitoring of progress towards elimination.
- Improving the quality and type of data collected on hepatitis C prevalence and incidence will allow for better allocation of testing and treatment resources.
- The APPG on Liver Health also calls for additional research into innovative approaches to improve hepatitis C care and for effective mechanisms to be established to share and implement examples of best practice.