Report highlights major failings in UK response to hepatitis C

The UK needs to “be doing so much more” in response to hepatitis C, according to a new report. Supported by a consortium of leading hepatitis C charities, Confronting the silent epidemic: a critical review of hepatitis C management in the UK  highlighted a 300% increase in hepatitis C virus (HCV)-related deaths since 1996 and significant concerns about the future of services within the reformed NHS.

“Diagnosis and treatment rates are dishearteningly low when compared to other European countries and patients are suffering unnecessarily as a result,” said Charles Gore of the Hepatitis C Trust. “It is now more important than ever that hepatitis C is a priority for commissioners and service providers throughout the UK.”

The report was funded by the drug company Roche and endorsed by the Hepatitis C trust, the British Liver Trust and the European Liver Patients Association, as part of the Hepatitis Awareness Leading Outcomes (HALO). It combines a review of the literature looking at the management of HCV in the UK with qualitative evidence providing case studies of best practice in the crucial areas of diagnosis, treatment uptake and retention and adherence.

According to WHO estimates, there are 214,000 cases of chronic HCV infection in the UK. However, approximately half of these infections are undiagnosed, and the Health Protection Agency (HPA) estimated that there will be 370,000 HCV infections in the UK by 2035. However, the HALO report showed there are serious deficiencies in HCV surveillance. A quarter of NHS health commissioners have yet to estimate the number of local diagnoses.

Despite the availability of care and treatment services across the UK, fewer than one in 30 people with HCV receive therapy every year. Treatment rates in France are up to twelve times higher. Moreover, in 2010 a report commissioned by the All-Party Parliamentary Hepatology Group found “huge variations” in hospital treatment of HCV, with many centres refusing therapy to drug users and those who had undergone a previous course of treatment. Inadequacies in the recording of treatment outcome rates were also highlighted.

The consequences of not treating HCV are already apparent. The report shows that hospital admissions due HCV-related disease increased from 612 in 1998 to 1979 in 2010, and deaths from 98 in 1996 to 323 in 2010, an increase of more than 300%.

Analysis of HCV diagnosis and treatment rates in leading industrialised countries showed the UK’s record currently placed it 13^th out of 14. In 2010, the All-Party Hepatology Group concluded: “it is unacceptable that the number of deaths from liver disease and liver cancer is rising sharply in the UK, while falling in the rest of Europe.”

The economic consequences of poor diagnosis and treatment rates are also highlighted in the HALO report. The HPA estimates that, if left untreated, 15,840 people will have HCV-related cirrhosis or liver cancer by 2035. This would result in treatment and care costs of £11,000 and £12,500 per patient per year at current values. If current trends continue, 4200 liver transplants will be needed at a cost of £50,000 each.

The number of people receiving HCV therapy in the UK needs to be quadrupled in order for the epidemic to be controlled and the human cost of liver disease reduced. Although this will cost an estimated £43.8 million per year, it would be highly cost effective, with gains in productivity of £73.3 million.

But data highlighted in the report suggest this is an ambitious target. Only a third of the now defunct primary care trusts fully implemented the 2010 Hepatitis C Action Plan for England and the situation does not look like improving. NHS changes introduced in April give local authorities responsibility for public health. The HALO reports draws attention to a survey conducted in March 2013 which found them “to be unprepared for their new responsibilities, with only a fifth having a clinical lead for hepatitis C in place, and even fewer with a strategy”. Moreover, gaps have been identified throughout the HCV care pathway, with the “cumulative effect…most notable in treatment”.

Two protease inhibitors were recently approved for the treatment of genotype 1 infection, clinical trials showing that they significantly improved treatment outcomes when used in combination with the current standard of care, pegylated interferon and ribavirin. Remarkably, the licensing of these agents was accompanied by a 6% fall in the number of treated patients in England, though this may partly be because clinicians and patients are awaiting even more effective and tolerable agents.

But the HALO report also highlights some examples of best practice, showing what can be achieved in the most challenging of circumstances when resources are made available to prepare people for triple therapy and support their adherence.

“The trajectory of HCV therapeutic advancement is stunning,” said Professor David Goldberg of Hepatitis Scotland. “Islands of outstanding clinical and public health practice in the UK demonstrate that, with adequate resources, imaginative leadership and major input from the third sector...the seemingly tortuous patient journey for those with lifestyle issues can be completed very successfully.”

The report concludes: “Maintaining the current level of response is not an option if we are to interrupt the UK’s relentless escalation of serious disease and death caused by hepatitis C. Action plans without muscle had suboptimal impact. There is no time to lose.”