Health: This virus won't let you forget: A little known form of hepatitis carries a stigma all of its own. Paddy Burt explains

I TELEPHONE my friend Alison, who lives in Sydney, and discover that she is acutely ill with hepatitis C. She has a 'horrible pain' from her liver to her shoulder and is suffering from acute fatigue. 'What is hepatitis C?' I ask. She is reluctant to talk about it, and her partner is equally secretive. 'There's, er, a stigma attached,' he says.

Immediately I phone two doctors in my family. 'A lot has been written about hepatitis B, but what is hepatitis C?' I ask. 'Hmmm . . . something between hepatitis A and hepatitis B,' says one helpfully. 'Definitely bad news,' mutters the other. After more waffling, the penny drops. They don't know.

Many doctors are in the same position. A survey of 200 GPs conducted for the British Liver Trust revealed that 80 per cent did not realise that most patients with hepatitis C also developed severe liver problems. The survey also showed that 74 per cent of the doctors could not name the treatments available, and 40 per cent did not know the groups of people particularly at risk.

So what is known? Hepatitis C, identified in 1989, is one of at least five viruses that cause inflammation of, and sometimes permanent damage to, the liver. Like the better-known hepatitis B, it is spread through the exchange of blood and body fluids (although, unlike B, the risk of transmission from sexual intercourse is practically nil). There is no vaccine available to prevent hepatitis C, although one already exists for hepatitis B.

Dame Sheila Sherlock, professor of medicine at the University of London, says hepatitis C is a common infection worldwide, spread primarily by contaminated blood transfusions and needle-sharing by drug-users.

'In the Sixties and Seventies, particularly in the United States, people were trying out drugs. Now they are developing hepatitis C,' she says.

I now understand the stigma that Alison's partner was concerned about. But the other routes of transmission remain unclear.

'In southern Europe and the Middle East, it is quite common for hepatitis C to be found without any obvious cause,' Dame Sheila says.

The plot thickens.

Dr John McLindon, clinical lecturer in medicine and gastroenterology at Manchester Royal Infirmary, recalls that when hepatitis B was first identified in the early Seventies, 'it became obvious there was something else being transmitted, by exchange of blood products and probably body fluids, that was causing chronic liver disease'.

Before hepatitis C was identified, the 'non-A non-B' virus, as it was referred to, accounted for more than 90 per cent of hepatitis cases following blood transfusions. Half of those infected went on to suffer chronic liver disease; many developed cirrhosis and some suffered primary liver cancer.

Screening of blood donors was introduced in 1991. A study by the North West Regional Blood Transfusion Service, Manchester, found that 65 of almost 130,000 donors tested positive for hepatitis C. In about three-quarters of this group, doctors found an identifiable risk factor: more than half had a history of intravenous drug abuse, a quarter had received blood transfusions, and tattoos and sexual contact were implicated in a smaller number. However, Dr McLindon says that in more than a quarter of the cases, no risk factor was found.

All these patients were completely well. 'But if you look carefully enough in the blood and in the liver, you can usually find evidence of the virus hanging around,' he says. 'It seems that there's a very long latent stage before the disease shows symptoms, and by then many will have developed established chronic liver disease.'

Dr Christopher Tibbs, of the liver unit, King's College Hospital, London, says: 'A high proportion of the patients I see have used drugs intravenously, probably for a very short time and a long time ago. They certainly do not consider themselves at high risk of getting hepatitis, and so it comes as a shock. It's their past catching up with them.

'Another suggestion is that the virus could have been transmitted through poorly sterilised injection equipment used in mass vaccination and mass treatment programmes, probably in the Fifties and Sixties.'

At present, Interferon, a drug that inhibits viral activity and boosts the immune system, is the main treatment for hepatitis C. 'The paradox,' Dr Tibbs says, 'is that while the people with mild disease are more likely to respond, they're the ones you're less inclined to treat, because the treatment isn't entirely pleasant.' Side-effects include fever, lethargy and occasional hair loss.

The British Liver Trust warns that unsuspected liver disease is set to cause major problems with estimates of the number of cases ranging from 300,000 to 500,000. By the time sufferers are identified, they have often developed cirrhosis or are approaching liver failure; it is usually too late for Interferon, and the only option is a transplant - which is why hepatologists are keen to find infected people early and monitor them annually.

The next time I speak to Alison, she tells me she is not the only person with hepatitis C. 'There's a huge new epidemic,' she says delightedly, and is cheered to know that many acquire the virus for no known reason. 'Because hep C is associated with drug use, you feel tainted,' she says. 'That stigma will now have to be removed.

'What particularly worried me was how close I might be to cirrhosis, or cancer. On ultrasound, my liver was shown to have atrophied to half the size it should have been. But, of course, you learn to deal with it, and it becomes part of your life.'

Alison believes she picked up the virus - presumably by an unknown route - on a visit three years ago to Thailand, where it is relatively common. But at least one of the doctors I consulted was sceptical. 'My bet is that your friend had had the virus for a long time. In her misspent youth, she was probably taking drugs in the back streets of Sydney.'

Maybe. I don't wish to know.

Alison is training to be a homoeopathic doctor, and with the help of her own homoeopath has developed a dietary and medical programme to deal with her illness. 'No Interferon for me,' she says. Her last three liver tests have been clear. 'My GP thinks that if I get another three clear test results, I'll have built up antibodies to the hepatitis and my body will start fighting it.'

Alas, my consultant friend is sceptical again. 'The hep C virus wears many overcoats,' he says. 'If a person develops antibodies against one, it puts on another.'

In the meantime, the hepatitis alphabet marches on. There is already hep D, E and F, and G is mooted. At this rate we will have reached Z by the end of the century.

Leaflets entitled 'Avoiding Viral Hepatitis' and 'Hepatitis B Vaccination' are available from the British Digestive Foundation, PO Box 251, Edgware, Middlesex HA8 6HG. (071- 487 5332).