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Charles Gore: we could eliminate hepatitis C in the UK - but only half of those infected know they have it

400 million people are living with viral hepatitis and it kills 1.45 million people each year. It is now the number one infectious disease killer, ahead of HIV/AIDS, TB or malaria, according to just published data in The Lancet. One of the reasons for this is the huge priority, backed by enormous resources, that has been directed at the other three major infectious diseases and the consequent impressive drop in the mortality they cause.

The other reason is that almost nothing has been done to tackle viral hepatitis. Finally in 2010 the World Health Organization (WHO) created, through its first resolution on hepatitis, an official World Hepatitis Day on July 28, recognising that in no other disease area is there such a huge gap between the burden and the level of awareness. Then, this year, WHO adopted another resolution calling on all 194 Member States to develop comprehensive national strategies to tackle viral hepatitis.

Viral hepatitis refers to five viruses – hepatitis A, B, C, D and E – which are very distinct but all of which cause inflammation of the liver, the meaning of the term hepatitis. Within the UK the two of primary concern are hepatitis B and C, which generally become persistent (“chronic”) illnesses, damaging the liver over many years and leading in significant numbers of people to liver cirrhosis and liver failure and/or liver cancer. Wales and Scotland have national strategies for both viruses, whereas England and Northern Ireland only have strategies for hepatitis C, which is seen as a bigger problem.

Hepatitis C is contracted through infected blood, which means that anyone who had a blood transfusion or blood products such as clotting factor before blood was screened in 1991 is at risk and should be tested. It also means injecting drug use is a very efficient way of contracting hepatitis C and sharing any equipment including water and spoons is extremely high risk. Almost half of people who inject drugs have hepatitis C. Even sharing straws or notes for snorting cocaine is a risk because of cocaine’s corrosive nature. It can also be contracted through unsafe tattooing or body piercing and there is a risk to babies born to infected mothers.

There is a great deal of excitement about hepatitis C at the moment because new drugs are just becoming available that can cure 90 per cent or more of people who take them. This makes elimination of hepatitis C in the UK a real possibility even though there is no vaccine. Unfortunately, of the 215,000 people estimated to have hepatitis C in the UK less than half have been diagnosed. The undiagnosed clearly cannot be treated. As a result we are seeing rocketing annual death rates, up 400 per cent since the mid-1990s. Although you can get a test at a GP, a sexual health clinic and in some pharmacies, it is a specific test you need to request and it is unlikely to be included in a general health screen. With awareness low, people don’t think about whether that are at risk and GPs don’t think to ask.

Former Beach Boy David Marks, who suffered from hepatitis C, and photographer Michelle Martinoli pose with others who feature in the exhibition of people who have lived with the illness, March 2005 Hepatitis B is equally undiagnosed and awareness is, if anything, even lower. The UK is considered to have very low levels of hepatitis B, one of the reasons it is one of just a handful of countries that does not give the very effective vaccine to all infants. This is misguided because, although there may be very low levels amongst people born in the UK, we have significant populations born in countries where hepatitis B is endemic, including much of Asia and Africa and parts of Latin America and Eastern Europe. As a consequence we may have similar numbers with chronic hepatitis B as with hepatitis C but we are not sure.

Like hepatitis C, hepatitis B is a blood-borne virus and the major route of transmission is from mother to child. However, it is also sexually transmitted, although most people who contract it as an adult get rid of it themselves without treatment and are then immune. For most of those with chronic hepatitis B it will not be a problem but it is impossible to tell unless you have been diagnosed and are then being regularly monitored. If it does start causing liver damage, it can be treated. Although the treatment cannot cure it, it can almost eliminate the chances of liver cancer.

Alerting and persuading people at risk to go to their GP or sexual health clinic and get tested is therefore the only way we can prevent people dying unnecessary deaths from these viruses. This year, on World Hepatitis Day, the World Hepatitis Alliance and WHO have set up the largest mobile plasma screen in the world in the middle of Glasgow to coincide with the Commonwealth Games. It will feature a vast tweet wall and, if you tweet during the day with the hashtag #thinkhepatitis, bricks in the wall featuring negative messages about hepatitis will be converted to positive messages of support and eventually the wall will come crashing down. Testing is being offered on-site by a group of Scottish charities including The Hepatitis C Trust, Hepatitis Scotland and Waverley Care. It is good that viral hepatitis is starting to get the attention it merits but, except in Scotland, it remains comparatively under-resourced in the UK and there is still a long way to go to find the 200,000-300,000 people unaware that they are living with a potentially fatal viral infection.

Charles Gore is Chief Executive of The Hepatitis C Trust

Charles was writing in the Independant newspaper: