Hepatitis C is not a visible virus. It disproportionately affects disadvantaged and marginalised communities, with almost half of people who attend hospital for hepatitis C coming from the poorest fifth of society. People living with hepatitis C often experience few obvious symptoms, and 40-50% of the estimated 160,000 with hepatitis C in England are unaware they are infected, though the virus can lead to fatal liver cirrhosis and cancer. Those most at risk of transmission from blood-to-blood contact are already from marginalised groups less likely to have a strong voice, including people who inject drugs, men who have sex with men, and migrant communities from endemic countries. When compared to HIV, also a blood-borne virus with similar transmission routes, awareness of hepatitis C is exponentially lower.
Life for those diagnosed has not been easy. Until recently, the only treatment option was an injection-based treatment lasting up to a year, with significant side effects and only a 50% chance of getting cured. In 2015, miraculous new treatments curing over 95% of people became available, with much shorter treatment durations and few, if any, side effects. This was an outstanding scientific achievement, but waiting lists for treatment prevented some from accessing a cure for long periods, and caused many others to drop out of care.
All of this is about to become a relic of the past. We now have an extraordinary opportunity to eliminate hepatitis C, with treatments set to become universally available following a new funding agreement between NHS England and industry due to be agreed later this year. Urgent national action is needed to find, diagnose, and treat everyone living with hepatitis C. Today, a new report by a cross-party group of MPs and peers sets out the road to elimination in the exceptional context of this deadly virus now being fully curable with easily deliverable, highly cost-effective medicines.
This opportunity comes with new challenges. As waiting lists for treatment decline and most historically infected patients who were already diagnosed and in touch with health services have now been treated, it must be a national ambition to find the undiagnosed, and re-engage those previously diagnosed who have never been treated. Leaving vulnerable people out there to develop life-threatening cirrhosis and liver cancer when we have a full cure available is a serious public health failure.
Today’s report by the All-Party Parliamentary Group on Liver Health makes bold recommendations designed to press forward towards achieving NHS England’s ambition to eliminate hepatitis C by 2025, five years before the World Health Organization’s global target. However, expert witnesses to the APPG’s inquiry agreed that unless the number of people getting diagnosed and treated is significantly increased, this ambition will not be met.
The inquiry found that low testing uptake, lack of national coordination and ineffective structures for delivery of treatment are stymying progress. Despite the implementation of an opt-out testing policy for all new receptions into prisons, testing in some prisons remains woefully low. Overly complex care pathways create barriers to accessing treatment for patients and the community services in which they are diagnosed. Funding pressures on health services are having a negative impact on prevention efforts and testing initiatives.
The report calls upon the Government to express its explicit support for the elimination agenda and ensure that the upcoming funding agreement is accompanied by ambitious national and regional targets, alongside mechanisms to ensure funds are distributed equitably. It also suggests new initiatives to get more people diagnosed and treated.
Treatment should be made available outside hospital - in community settings like drug and alcohol services and sexual health services - to make them more accessible to those at risk who may have chaotic lives. Drug and alcohol services should be commissioned to conduct opt-out testing for all their service users, with clear mechanisms to hold them to account if they don’t meet targets. Innovative strategies like cash incentives for testing - especially for those in networks of people who inject drugs where transmission risk is high – should be implemented alongside a ‘treatment as prevention’ approach seeking to reduce prevalence among those actively injecting. Many other improvements making treatment more accessible, like simplifying referral pathways, could be made.
The upcoming deal between NHS England and industry has the potential to kick-start improvements in prevention, increase diagnosis and enable unlimited access to treatment around the country. It also makes it essential that the varied, overlapping roles and agendas of those involved in hepatitis C care – including NHS England, the Department of Health and Social Care, local authorities, the prisons service and industry – are brought together under a coherent national strategy.
Eliminating a public health issue that disproportionately affects some of the poorest and most marginalised groups in our society is a remarkable and eminently achievable opportunity. There is no time to waste in making elimination of hepatitis C a national objective.
The report of the All-Party Parliamentary Group on Liver Health on hepatitis C elimination is available here. For more information on hepatitis C, including information about risk factors and how to get tested, please visit www.hepctrust.org.uk.