According to the U.K. Hepatitis C Coalition, half of people living with hepatitis C are still undiagnosed, and just 3% of those infected are treated each year — a state of affairs that the Trust says are simply “unacceptable.”
Hepatitis C, a viral disease which affects the liver, can go undetected for years, during which time it can cause significant damage and can lead to liver cirrhosis (scarring), liver cancer, and death. The burden of chronic hepatitis C is substantial and continues to grow, as people who contracted the virus many years ago begin to develop the long term complications of living with the condition.
Hepatitis C is transmitted through blood-to-blood contact and it is estimated that some 210,000 people are currently infected with the virus in the UK. With the right diagnosis and treatment, hepatitis C is curable for most people. The Coalition cites research from the London Joint Working Group that found it was cheaper to treat chronic HCV than to allow the disease to progress, and that treating just 10% of those people with hepatitis C could save £200 million in London alone.
However, they report that at present only 3 percent of persons chronically infected receive treatment each year. They note that illustrative of the failure to tackle hepatitis C effectively, the number of hospital admissions for liver cancer and end stage liver disease in England has increased steadily over time. Without earlier identification and more treatment, the burden of end stage liver disease, liver cancer and liver disease mortality from hepatitis C will continue to grow for at least the next 20 years.
The Hepatitis C Coalition — a group of leading clinicians, patient organizations and other interested parties who share the objective of securing coordinated action to reduce deaths from hepatitis C and turn the tide on liver disease mortality in the UK — was established at the end of 2013 to bring together a range of expertise on hepatitis C and related services. The Coalition is committed to reducing morbidity and mortality resulting from hepatitis C, and eventual elimination of the virus, and is calling for action to improve services to ensure that more people are tested, treated and cured. The Coalition is run with funding from Gilead Sciences Ltd.
The Coalition wants the UK government to improve hepatitis C services immediately to prevent thousands of unnecessary deaths, and has posted a report, entitled “A Vision for Change in Hepatitis C,” in which leading hepatitis C clinicians, patient and professional groups determined that the current state of hepatitis C services in England is unacceptable. They note that deaths from hepatitis C have quadrupled since 1996 and are rising faster than any other disease in the UK’s five big killers list, and project that without earlier identification and more treatment, the burden of end stage liver disease, liver cancer and liver disease deaths from hepatitis C will continue to grow for at least the next 20 years.
Too often, the Coalition charges, examples of good practice are restricted to specific areas or centers of excellence. This can mean that access to effective hepatitis C services can be dependent on where people with hepatitis C are living, as well as on how proactively different parts of the UK approach testing and referral of patients to treatment.
They note that limited data collection makes it hard to quantify the current state of hepatitis C services but from the information that is available and anecdotal evidence gathered through our day-to-day activities, they know that there is significant scope for improvement across awareness, testing, treatment and care and support.
In response, Dr. Paul Cosford, Director for Health Protection and Medical Director at Public Health England, said: “With around 160,000 people in England living with chronic hepatitis C, there is an urgent need to scale up our response and prevent more deaths and serious illness. Recent advances in medicines have led some experts to predict that hepatitis C could be eliminated in the UK by 2030.”
Coalition Chair Professor Mark Thursz, a professor of hepatology at Imperial College and consultant in hepatology at St Mary’s Hospital, London, observes: “We are in a very fortunate position to have cost effective treatments that will cure the majority of hepatitis C patients but we need to find these patients and treat them.”
The Coalition has set out eight clear recommendations, including need for development of a clear national implementation plan, improvements in diagnosis and screening, and timely access to approved medicines.
1. Ministers and political parties to commit to halving hepatitis C related liver cancers and deaths by 2020 and eliminating the virus by 2030.
2. The Department of Health to take lead responsibility for an implementation plan to replace the 2004 Action Plan for Hepatitis C and ensure a coordinated and effective approach to testing, treating and curing people with the condition and the prevention of new infections.
3. A Hepatitis C. Elimination Group, reporting formally to Ministers, to be established to co-ordinate the work of the relevant health organizations in improving services, comprising the relevant statutory and non-statutory organizations and patient, clinical and local government representatives.
4. Testing for hepatitis C and other blood-borne viruses to be provided in a range of healthcare settings to maximize coverage, working to nationally agreed performance standards as part of structured care pathways
5. Commissioners to ensure that, as a core part of contracts, service providers collect and report data on their hepatitis C outcomes to standards set by Public Health England
6. NHS England’s specialized commissioners to ensure the availability of services and NICE-approved treatments for all patients diagnosed with hepatitis C in line with international guidelines
7. Industry to ensure that new therapies are priced to meet NICE criteria for cost-effectiveness for the whole hepatitis C patient population
8. Commissioners to work proactively with voluntary sector groups providing advice and support to patients with hepatitis C and to develop prevention strategies targeted at people at risk of contracting the virus.
They are also appealing to the Department of Health to take lead responsibility for the implementation plan, to ensure a coordinated and effective approach to testing, treating and curing people with the condition and the prevention of new infections.
The Coalition has posted an infographic on a strategy for elimination of hepatitis C here:
The Hepatitis C Trust, the national UK charity for hepatitis C, says that historically, hepatitis C has been neglected, partly because there has been no concerted patient voice. They note that people with hepatitis C have typically kept quiet because the disease is infectious, and because it has been wrongly stigmatized as ‘a drug users’ disease’. The Trust is committed to changing this, by:
• raising public awareness that this is a virus that can be contracted in many ways
• ending discrimination against people living with hepatitis C
• creating an active community of patients willing to stand up and be heard
• providing information, support and representation for people with hepatitis C.
Charles Gore, a founding member of the The Trust, is considered a foremost authority on hepatitis C. He originally set up The Hepatitis C Trust in 2001 and is its Chief Executive. Dr. Gore has authored two reports auditing the National Health Service’s implementation of the English Hepatitis C Action Plan and has co-authored a number of papers on the use of Interactive Health Communication Applications.
Dr. Gore has been the driving force behind establishing World Hepatitis Day and was elected President of the World Hepatitis Alliance, the umbrella organization working with some 200 patient groups worldwide and set up to run World Hepatitis Day.
The Trust says its mission is to reverse the rapidly increasing death toll caused by hepatitis C in the UK until no-one dies from this preventable and treatable disease and, ultimately, it is all but eradicated in that country.
The Hepatitis C Coalition
The Hepatitis C Trust