The Hepatitis C Trust
The Hepatitis C Trust is the national UK charity for hepatitis C with offices in London and Edinburgh and has been operating since 2001. It is a patient-led and patient-run organisation: most of our board, staff, and volunteers either have hepatitis C or have had it and have cleared it after treatment.
Our over-arching goal is to shut down because we are no longer needed, in other words because hepatitis C has been eliminated in the UK. Historically, hepatitis C has been neglected, partly because there has been no concerted patient voice and because it is often wrongly stigmatised as a drug user’s 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.
The Trust’s 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 this country.
To achieve this we run a range of projects and services that fall broadly into 5 areas:
- Awareness raising
We are also actively involved in leading international advocacy efforts. The Trust firmly believes in patient-centred medicine and is committed the principle of to continually increasing the opportunities at the organisation for people employment with hepatitis C, both as paid staff and as volunteers.
Hepatitis C in the UK
There are 130-170 million people living with hepatitis C globally and 3 to 4 million new cases every year, according to the World Health Organization. In the UK there are around 215,000 people living with the virus, of whom around half have no idea they have it. Despite Government Action Plans in all 4 countries of the UK, up until recently a combination of government inaction and hard-to-tolerate and relatively ineffective treatment meant that new infections were keeping pace with the numbers of people either dying from the disease or being cured. As a result the number of people living with hepatitis C has been the same for a number of years. All that could be about to change.
Elimination of hepatitis C
Major advances in drug discovery and development have now made it possible to cure around 90% of people with hepatitis C at the first attempt with short, much more tolerable treatment regimens and even better drugs will be available shortly. This means that we have the opportunity to eliminate this disease in the UK. To do this we need to accomplish three things:
- Prevent new infections. New infections have already started to fall and, once we begin curing large numbers, there will be fewer and fewer people with hepatitis C to infect others.
- Diagnose all those currently infected. This is the most challenging of the three, requiring persistent awareness efforts.
- Treat all those diagnosed. The biggest issue has been the price of the new drugs but most are NICE-recommended and prices are falling.
Separate modelling by The Hepatitis C Trust, Public Health England and the Center for Disease Analysis in each case suggests that elimination in the UK could be achieved by 2030, if not earlier. This is supported by work done by the World Health Organisation suggesting that globally hepatitis C could be eliminated by 2030 and indeed elimination by 2030 has been set as the goal of the WHO’s first-ever Global Health Sector Strategy on Viral Hepatitis.