Thousands of Hepatitis C sufferers in Ireland ‘don’t know they have it’, committee told

Up to 700 people are diagnosed with ‘silent killer’ each year but, where detected, there is a 96% cure rate

A majority of up to 30,000 people in Ireland currently infected with the “silent killer” Hepatitis C probably do not know they have it, an Oireachtas committee has heard.

Despite being curable within weeks, there are “big black areas” around the country where treatment is not available and family doctors are refusing to treat high-risk groups, TDs and Senators at the Joint Committee on Health were told.

Drug-users - who account for around seven in ten of those infected - are moving from rural areas to Dublin to “become homeless” just so they can access the healthcare to treat their condition, Dr Austin O’Carroll said.

“There is definitely a lack of awareness among GPs [about Hepatitis C],” he told the hearing.

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“I have also always believed, particularly down the country, that GPs will avoid treating drug users. I don’t think it should be a matter of choice personally. You are more likely to die of drug use than of diabetes.

“The problem is if GPs are avoiding treating this particular section of the population, then there is going to be a group of people with Hepatitis C who aren’t accessing proper primary care services.

“There are big black areas where you can’t get treatments. I have had a number of people who have come up from the country to become homeless so they could access both opioid substitution treatment and Hep C treatment.”

Making the economic case for eradicating the disease, Dr O’Carroll said testing for Hepatitis C was “not particularly expensive” but undetected sufferers can develop cirrhosis - liver damage - which is “phenomenally expensive” to treat.

Those unaware that they are infected also go on to infect others. Dr O’Carroll, who routinely tests people at his practice, said there should be a “low threshold” for testing those at “high risk”.

Nicola Perry, of the Hepatitis C Partnership, a charity working to wipe out the disease in Ireland, said three in ten people who are infected have never used drugs.

As well as those infected through contaminated blood transfusions in the past, it can be passed on through sexual transmission, from mother to child and also through infected equipment at unregulated tattoo parlours.

“We also have a culture within gyms and fitness locations of people using steroids, using needles,” she told the committee.

“Then, there is a figure - consistent globally - of around 7 per cent of people who are infected who don’t really know where they got it. They do not have any risk behaviour that they have engaged in.”

Ms Perry said Hepatitis C is called the “silent killer” for good reason.

“People do not talk about it enough,” she said. “But the other big reason for the ‘silent killer’ tag is, if left untreated, it can and does progress to significant liver damage to liver cancer, and possibly to death.

“It is a serious, serious disease, but has this incredible opportunity for cure within a matter of weeks.”

Up to 700 people are diagnosed with Hepatitis C in Ireland every year. There is a cure rate of around 96 per cent for those detected, Ms Perry said, with “minimal side effects.”

But getting tested and treated is largely “dependant on your location in the country.”

The World Health Organisation (WHO) aims to eradicate the disease by 2030, Ms Perry said but there are “20,000 to 30,000 people untreated living with Hepatitis C” in Ireland today. Fellow partnership member Marcus Keane noted the “majority probably don’t know they have it”.

To meet the WHO target would require treating around 3,000 a year. In 2020, 532 people were treated.

Scotland is on course to meet the target by 2024, through a programme of increased community treatment and “micro-elimination” targets in different areas which are published, the committee was told.

Hepatitis C Partnership research in Ireland suggests more than half the population has never heard of the disease and less than a third know where to get tested.

Lawrence Murphy, who was infected with Hepatitis C, got treated and cured and now works with the charity, said people can be in physically good health and not realise they have had the disease for decades.

Diagnosed in the late 1990s, he described the stigma around it at the time.

“All I knew was don’t tell anyone I have it and don’t talk about it,” he said.

“I felt like I had an intruder in my body... a potentially life threatening illness and I had fears around passing it onto loved ones.”

Mr Murphy told the hearing he had a “dirty and uneasy feeling... it began to haunt me that Hepatitis C was attacking my body whether I showed signs of it or not”.

Even an accidental cut from brushing his teeth would cause him to “react badly, I would not want anyone to come near me. I felt contagious and like an outcast”.

In 2014 he completed a course of the highly-effective direct-acting antiviral (DAA) drugs and later recorded his first negative SVR (sustained virologic response) test which showed “I was actually cured”.

“It was surreal,” he said. “I asked myself if this was real… When I first heard about the wonder drugs I was quite sceptical. Then when I got my head around that there was a cure I offered myself on a trial basis at the time.

“I was quite apprehensive, unsure. But when I saw the outcome, the virus leaving my body... it was a surreal moment, I didn’t think it would ever happen.”

Brian Hutton

Brian Hutton is a freelance journalist and Irish Times contributor