80% of people don't realise hepatitis C can lead to cancer and only a third realise it is curable

New data released by The Hepatitis C Trust to mark World Hepatitis Day shows a widespread lack of awareness of the transmission risks and symptoms of the potentially deadly virus hepatitis C.

Despite 80% of respondents stating they thought they knew what hepatitis C is, less than 40% knew that it infects the liver, and less than 30% knew the virus is curable.

Symptom awareness is low, with only a third of respondents accurately identifying tiredness, loss of appetite, vomiting and abdominal pains as signs of infection. When asked how hepatitis C is transmitted, 30% incorrectly said it was through exchanging saliva. Less than half knew that symptoms are not always obvious and can go unnoticed, leading to people living for years without knowing they are infected.

If left untreated, hepatitis C can lead to liver cancer, liver failure and death. Between 2005 and 2014, deaths from hepatitis-C related end-stage liver disease in England more than doubled, though are now beginning to fall due to new treatments.

The Hepatitis C Trust is calling for increased community outreach efforts to ensure all those living with hepatitis C who are undiagnosed or out of touch with services are tested, treated and cured. Bold ambition is necessary to increase the numbers of people tested and diagnosed for hepatitis C and achieve the NHS England ambition of eliminating hepatitis C by 2025.

Hepatitis C is transmitted through blood-to-blood contact and, contrary to popular myth, cannot be spread via spitting, coughing, sneezing or other physical contact. It is preventable, treatable and curable for the vast majority of people. Since 2015, treatments with short durations, limited side-effects and cure rates upwards of 95% have been widely available.

People who inject drugs are the group most at risk of becoming infected with hepatitis C, and anyone who has ever injected drugs, even once or a long time ago, should get tested. Other high-risk groups include men who have sex with men, people in the South Asian community, and people who received a blood transfusion prior to 1991. Referral for testing is available through GPs, and support and guidance is available from The Hepatitis C Trust via a helpline staffed by people with direct experience of hepatitis C.

Political leaders, clinical experts and campaigners have spoken out on World Hepatitis Day to express their support for the fight to eliminate hepatitis C and emphasise the importance of increasing the numbers of people tested and treated.

Rachel Halford, Chief Executive of The Hepatitis C Trust, said: “With revolutionary new treatments available to all through the NHS, this new data shows clearly that the greatest challenges to tackling hepatitis C are dispelling misconceptions, raising awareness and minimising barriers to testing and treatment. We want to see treatment available in all community settings, including pharmacies, drug and alcohol services, sexual health services and primary care. There’s no reason that testing cannot be conducted by any trained service worker, and community outreach will be essential to ensuring all those currently undiagnosed are tested, treated and cured."

Public Health Minister Steve Brine said: “World Hepatitis Day is an important opportunity to reiterate the UK Government’s commitment to not only meeting the World Health Organization goal of eliminating hepatitis C as a public health threat by 2030, but beating it. For too long, hepatitis C has been overshadowed by other public health concerns. We are now determined to make progress towards ensuring the virus is eliminated and welcome NHS England’s recent announcement of an ambition to achieve elimination as a public health threat by 2025, five years earlier than the WHO target.

Since the arrival of new treatments for hepatitis C, we have seen encouraging progress in England with deaths resulting from hepatitis C falling for the first time in a decade in 2016-17, something which was sustained in 2017-18. Between 2014 and 2016, there was a 3% fall in deaths from hepatitis C-related end-stage liver disease. However, we recognise that there is more to do. We are determined to find and treat the 40-50% of hepatitis C patients who remain undiagnosed and to linking into care those previously diagnosed but not treated.  World Hepatitis Day is a time to reflect not only on what has already been achieved, but also to renew our efforts in tackling hepatitis C;  we can and will achieve elimination of hepatitis C as a public health threat.”

First Minister of Scotland Nicola Sturgeon said: “Scotland has historically been regarded as a world leader in its approach to tackling hepatitis C, and the Scottish Government remains committed to achieving elimination of hepatitis C as a public health concern. It is wonderful to see the progress being made now that new treatments are available that can cure hepatitis C with far fewer side effects than with the medicines of the past. I know that these treatments are making a huge difference to the lives of people who have been affected by hepatitis C.”

First Minister of Wales Carwyn Jones said: “The big challenge now is to raise awareness of hepatitis C among the general public and, particularly, those who may have an undiagnosed infection. World Hepatitis Day is an opportunity to raise awareness of the condition and I urge anyone who believes they may have been at risk to get tested so they can receive treatment.”

Dr Helen Harris, Clinical Scientist, Public Health England, said: “The results of this survey highlight the very low levels of awareness of hepatitis C and the factors that put people at risk of infection. We strongly encourage anyone who may have been at risk of hepatitis C infection to get tested, whether or not they have any symptoms. It is crucial that people are tested and diagnosed in order that they can access treatment early to clear the virus. Increased levels of testing and diagnosis are essential if we are to reach our goal of eliminating hepatitis C as a major public health threat in the UK by 2030, at the latest.”

Professor Steve Ryder, Consultant Hepatologist and Chair of the Hepatitis C Coalition, said: “This timely research from the Hepatitis C Trust is very welcome. As World Hepatitis Day approaches, now is the time for action on eliminating this curable disease. As these survey results demonstrate, it is critical that we address the lack of awareness and the misinformation surrounding hepatitis C swiftly and decisively. We need to spread the message as widely as possible that people should be on the lookout for symptoms and to get tested if they have any of the risk factors. Crucially, there is no cause for alarm, because this disease can be effectively treated. This is a public health battle we can win, and it is a real opportunity to seize it with both hands.”

***

For media enquiries please contact Urte Macikene on 0754 377 6254.