Hepatitis C is known as a “silent” virus that may not be detected until the slow but progressive and potentially life-threatening damage it causes to the liver becomes apparent.
Cirrhosis, cancer and liver failure can be the outcome of untreated, chronic infections. An estimated 3,500-5,000 people in Ireland are living with chronic hepatitis C, and most are unaware they have been infected.
Although there is no vaccine against hepatitis C, there is very effective antiviral medication to treat the infection, with a cure rate of more than 95 per cent. But to avail of treatment, an individual needs to know they are infected and that can only be established through testing.
The Health Service Executive (HSE) has expanded its free, home-testing service for this virus to include an oral swab, which can be ordered confidentially online (hepctest.hse.ie) by anyone aged over 18 and is posted out in discreet packaging. The self-test gives a result within 20 minutes.
Aimed at those who recognise they have current or past risk factors, the oral test will either set their mind at rest, or, if positive, indicate further testing is advisable. If necessary, patients will be fast-tracked into free treatment.
Detection of hepatitis C antibodies indicate only that the individual has had the virus at some stage but it may no longer be present. For about one in four people, the infection will clear from their body without treatment.
The home-testing kit is one strand in the drive towards 2030 targets for the elimination of hepatitis C, under a global initiative by the World Health Organisation (WHO). Ireland is classed as a low-prevalence country for this virus, ie less than 2 per cent of the population are affected, but the aim is to reduce it to the status of a rare disease, says Dr Julia Sopena-Falco, HSE clinical lead for hepatitis C.
The virus is transmitted through blood-to-blood contact. The most common way to become infected is through sharing equipment used in the taking of illegal drugs or the misuse of steroids – not just needles/syringes, but also things such as spoons, filters, water or crack pipes. The sharing of razors and toothbrushes with an infected person is a risk too.
Dr Julia Sopena-Falco. Photograph: Sasko Lazarov/Photocall Ireland
It can also be passed on through unprotected sex. This risk, although low, is higher for gay, bisexual and other men who have sex with men, those living with HIV, those with other sexually transmitted infections and if there is bleeding during sex. It can be transmitted through menstrual blood of an infected woman.
There is also a risk if non-sterile equipment is used for tattoos, body piercings and other cosmetic procedures. Nowadays, most tattoo parlours have high hygiene standards, but Sopena-Falco suggests some older people may have got a tattoo in less than ideal conditions several decades ago.
[ The fight against hepatitis C ]
Hepatitis C virus was only identified in 1989. All blood donations in Ireland have been checked for the virus since October 1991 and organ donations since 1992.
The Government set up a compensation tribunal in 1995 for anybody who had acquired the virus due to contaminated blood transfusions or products before screening was implemented. It was expanded to include those who had contracted HIV from certain blood products within the State. The tribunal’s latest annual report, for 2023, records 36 new claims, bringing the total since inception to 5,048, and more than €174 million has been paid out.
Sopena-Falco, a hepatology consultant at St Vincent’s University Hospital in Dublin, believes Ireland is on track to meet the WHO targets. Various measures, including the home testing, targeted services for high-risk groups – such as drug users, prisoners and people from countries with a higher prevalence of hepatitis C – and the screening of pregnant women, are being advanced under the national treatment programme. To date, the programme has treated more than 8,000 people, with a cure rate exceeding 95 per cent.
All pregnant women in Dublin’s three maternity hospitals are tested for hepatitis C. However, in maternity units outside the capital, expectant mothers are only tested if risk factors are apparent or disclosed. The programme is working with maternity specialists to promote universal screening throughout the country because pregnant women’s contact with healthcare services is a good opportunity for testing.
“It might be people who are completely healthy but might come from a country where the prevalence is a little higher,” says Sopena-Falco. “Or they might have a risk exposure or they might have chaotic lives. When they are pregnant, it’s a time where people concentrate on their health.”
[ Thousands of Hepatitis C sufferers in Ireland ‘don’t know they have it’Opens in new window ]
Women will not be treated for the virus while they are pregnant. But diagnosing the patients is important, she stresses, linking them into follow-up care and ensuring the virus has not been passed on to the baby. The risk of transmission is about 5 per cent, ie an estimated one in 20 newborns will have hepatitis C if their mother is infected.
WHO’s targets towards elimination are that 90 per cent of patients with chronic hepatitis C be diagnosed and 80 per cent of those treated by 2030. A study led by Sopena-Falco’s programme predecessor, Prof Aiden McCormick, suggests that while there is still a significant number of undiagnosed cases in the community, there are fewer than previously estimated. The results indicate the prevalence of chronic infections is approximately 0.1 per cent of the population.
All cases of hepatitis C must be reported and between 2012 and 2024, notification rates decreased by over 50 per cent, according to the Health Protection Surveillance Centre. It reported 462 new notifications for 2024 and 456 for last year.
The development of direct-acting antivirals (DAAs) was a game-changer in offering an almost guaranteed cure within two or three months through oral medication. Before that, treatment involved weekly injections of interferon for up to a year, with significant side effects and much lower success rates.
Initially, DAAs were only available through acute hospitals in Ireland but a 2017 pilot project in one Dublin addiction centre paved the way for reaching high-risk individuals in drug-using and homeless communities. Now, 20 per cent of hepatitis C treatments are delivered in the community. The pilot started in the HSE addiction services on Castle Street in Dublin 2 and gradually moved out to other clinics.
“It was like little circles of micro-elimination,” says Gail Hawthorne, clinical nurse specialist and hepatitis C liaison, sitting in an upstairs office on Castle Street. “We blasted one treatment centre because all our clients might be living together or sharing together. So we did it geographically, little pockets.”
Now the aim is to bring hepatitis C testing and treatment to wherever it is needed in their area’s 11 addiction treatment centres and six satellite clinics.
Dr Margaret Bourke and Gail Hawthorne. Photograph: Leah Farrell/Photocall Ireland
When Hawthorne took up her role in 2008, a big part of the job was looking after people who were dying from hepatitis C, with cirrhosis and decompensated liver disease. “That’s gone. By treating them, we’re stopping that.”
She works alongside Dr Margaret Bourke, GP co-ordinator for addiction services in HSE Dublin and Midlands, who explains they still see people who have issues with end-stage liver disease, “but they tend to be people whose major addiction is alcohol, not opioids”.
Anybody entering addiction services has blood tests that, among other things, screen for viruses including hepatitis C. But Hawthorne says the oral swabs “are brilliant for opportunistic testing, if somebody just walks into a drop-in [centre]”. It’s ready to read in 20 minutes and “they know right then whether they need follow-up or not”.
Almost 400 people have been treated for hepatitis C within this initiative since the pilot started and that does not include people with decompensated liver disease and/or who are co-infected with HIV, as they are referred to other services.
In the early days, Hawthorne and Bourke needed to dispel the fear of interferon treatment and the “horror” of a possible biopsy to assess the liver. They explained how the much easier and better the new medication was – a message that was spread by word of mouth, “so they bought into it”, says Bourke. Nobody was refused treatment because they continued to use drugs but regular attendance at the clinic was essential.
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Hawthorne explains how they use a fibre scan to assess for liver damage. “It basically measures liver stiffness. When the liver is nice and healthy, it’s soft and bouncy.”
While hepatitis C is billed as a symptom-free illness, it isn’t, says Bourke. “People don’t realise the symptoms until they’re cleared.”
Fatigue is an enormous issue, she suggests, along with amnesia “because the virus passes the blood-brain barrier”, and poor appetite.
A long-working partnership, Hawthorne and Bourke clearly go to great lengths to meet vulnerable people where they are at in their efforts to treat hepatitis C. They also need to spot potential reinfection cases and suggest retesting, as treatment does not give immunity.
Sometimes, “it’s like trying to woo someone,” says Hawthorne of their efforts to test and treat. On occasions they arrange for medication to be brought to a GP practice, where a patient goes for their prescription, because they are slow to come into the clinic. Or they might liaise with community workers to locate and persuade somebody to go to a clinic for medication.
Whatever the circumstances, patient by patient the search – and the curing – goes on.