`You could have hepatitis C. Anyone could. Thousands of people are walking around like human time-bombs with this deadly disease - not knowing they have it and not taking any precautions against spreading it," says Cormac (not his real name) who tested positive for hepatitis C when receiving treatment for another health problem. "I haven't told anyone except my girlfriend," he says. "Everyone would think I was a drug user. I don't know how or when I got it. I've never used drugs or had a blood transfusion. When my GP told me my test was positive, it was a bombshell. He didn't seem to know much about it and he gave me no information at all. Then I had to wait more than two months to see a specialist - if I hadn't got information off the Internet, I'd have gone mad with worry.
Every specialist I've seen assumes that I am, or was, a drug user. There are no support groups for people like me." Often referred to as the "sleeping giant", the liver disease, hepatitis C, is described by the World Health Organisation as a global pandemic. The WHO estimates there are 170 million people infected world-wide - compared with 20 million people infected with HIV. Although accurate figures are not available in Ireland, a spokesman for the Irish Virus Reference Laboratory says the increase in numbers undergoing hepatitis testing (available since 1991) has been "horrendous". In the UK, it is estimated 2 per cent, or 1.2 million people are affected. "It is not sensationalist to call hepatitis C a hidden epidemic," says Dr John Crowe, consultant gastro-enterologist at Dublin's Mater Hospital. "There is an awful lot of hepatitis C in Dublin which is not visible. What it becomes depends on the efficacy of the treatment."
Crowe is the prime force behind Ireland's first Centre for Liver Disease, a research and treatment centre which will open in Eccles Street, Dublin, later this year. According to Pauline Beegan, who specialises in counselling people with hepatitis C: "There are ordinary, respectable people who aren't telling anybody they've got it. They are terrified of the stigma because it's identified with HIV."
Cormac falls into the hepatitis C category labelled "sporadic" - people who have no idea how they contracted the virus - which includes groups of Japanese housewives and Greek pensioners. Internationally, sufferers answering this description vary from 10 to 40 per cent of the total numbers infected.
Hepatitis C, also known as HCV, is a much more robust virus than HIV - some claim it can survive as long as three months in dried blood and the sterilisation of needles (for tattoos, body-piercing, acupuncture etc.) which would prevent HIV transmission may not be sufficient to prevent hepatitis C. Like HIV, the virus is transmitted through blood-to-blood contact, but unlike HIV, it is not yet clear whether sexual transmission occurs. One difficulty with diagnosing HCV is that many sufferers display no symptoms for more than 20 years. "Patients are confused," says Dr Emmet Keefe, of Stanford Liver Transplant Programme in the US. "They are working full-time, running marathons, and they are devastated to find out they have this disease." Symptoms which do appear vary from person to person and can include fatigue (which can be misdiagnosed as ME), flu-like symptoms, jaundice, nausea and inability to concentrate.
"Your mental health improves when you know what it is," says Helen (not her name), who is one of the 1,500 women infected from antiD. There is no cure and no vaccination. The only treatment, interferon, shows a sustained response in only 15-25 per cent of cases but is less effective for genotype 1, the most common form of HCV in Ireland. For some, the side-effects of interferon are merely flulike symptoms but for others, such as Helen, they can be worse than the hepatitis symptoms. "I couldn't eat, my hair fell out and I ended up in a psychiatric ward," she says. During this time, however, her liver disease progressed from severe to mild. As with HIV, combination treatments are proving more effective. One Irish hepatologist believes the combination of interferon and ribavirin (available on a named patient basis but soon to be licensed) may offer a 90 per cent success rate for those with genotype 3. However, only about 20 per cent of those with HCV in the Republic have this genotype.
If treatment fails, the disease in many cases eventually develops into cirrhosis or liver cancer.
It is estimated that 65 per cent of those who have used intravenous drugs - even once - have HCV. Among long-term drug-users, this figure increases to 95 per cent. US reports suggest cocaine users who share snorting apparatus may also be at risk. According to Linda Reed, a project worker with Dublin Aids Alliance, who is co-infected with HCV and HIV, hepatitis C is seen as an afterthought and doctors tend not to address the problem.
"I'm on 30 anti-virals a day for HIV but the fact that these could be damaging my liver has never been mentioned. I have severe joint ache and extensive fatigue - I feel like I'm 20 stone heavier - but I don't know if this is the side-effects of the HIV drugs or symptoms of hep C." Linda Reed points out that the Department of Health leaflet Hepatitis C - What is it? advises against sharing needles but fails to warn against the equally dangerous practice of sharing other drug-taking equipment such as spoons, water or filters. Research into HCV is still in its infancy and, compared with research into HIV/Aids, is under-funded, but Dr John Crowe is optimistic: "The combination therapy is an advance and I'm sure an effective treatment will be developed."
Further information is available in The Hepatitis C Handbook by Matthew Dolan, published by Cat- alyst Press, £16.80; Living with Hepatitis C from the Department of Health (phone 01 6714711); at www.yuancentre.com; and from John Tindall, phone 0044 181 6909145