Up to 20,000 people in Ireland may have the “silent disease” Hepatitis C as the State’s target to eliminate the curable virus lags 21 years behind schedule.
Ireland is facing an uphill battle to overcome the disease by 2030 due to a “lost cohort” of cases, a leading professor has warned.
Hepatitis C is a viral infection that causes inflammation of the liver and is a major cause of cirrhosis and liver cancer. It is spread through contact with the blood of an infected person and, if undiscovered, can shorten life expectancy by up to 15 years.
The disease is often associated with drug use, but can also be contracted through tattoos, infected blood products, snorting narcotics and sexual activity.
Today is World Hepatitis Day, but campaigners warn that with around 600 to 700 new Hep C diagnoses annually and treatment numbers declining, Ireland is 21 years off elimination targets.
This, they warn, is due to limited availability of treatment for those outside specialist addiction services and a “contained focus” on people linked into care with limited efforts to identify cases at risk.
The number being treated has fallen by two-thirds, from 354 in the first three months of 2019 to 110 in the first quarter of this year.
“At the moment, we have probably had as many, if not more, new infections in the past five years as we have treated,” said Prof Jack Lambert, consultant in infectious diseases and genitourinary medicine at Dublin’s Mater Hospital and UCD.
“In 2020, we treated approximately 550 people and less than 100 of those in the wider community setting. We have to re-think how we can reach our target of treating 1,500 people per year to eliminate Hepatitis C by 2030.
“People on methadone are being identified all the time, but people who may previously have been drug users but are no longer engaged in care may be part of the silent epidemic of those lost to follow up.
“Because there is no systematic retesting once you test negative, we now have a lost cohort of Hepatitis C sufferers. Everyone should have a Hep C test once in their lifetime, probably during their 40s, as is the case in the US.”
Prof Lambert said health authorities must now target other cohorts for screening, including those who may have developed Hep C from sexual contact, tattoos and non-intravenous drug use.
Increased alcohol consumption during lockdown among those who do not know they have the infection has also led to more patients presenting with advanced liver disease.
The infection of large numbers of people from eastern Europe with tainted blood products following the fall of the Soviet Union – and now living here – is also a contributing factor in rising cases.
“The scandal is that our neighbours in the UK can have someone tested and beginning treatment within an hour. We are nowhere near that in the community and there are only a handful of GPs prescribing in the community,” said Kristy Hayes, Head of Advocacy with the Hep C Partnership.
“There are clear guidelines from the World Health Organisation in relation to community treatment, but that model of care is not happening in Ireland.”
A woman who was diagnosed with Hepatitis C a decade ago and was later cured following treatment said it remains a grossly misunderstood virus in Ireland.
Sophie (53), a project worker in the healthcare service, is convinced she contracted the virus after getting two tattoos in her 20s and believes she would have died had she not received treatment.
“There are people who have never touched drugs who have Hepatitis C and they are put through a huge amount of stigmatisation,” said Sophie, from north Dublin.
“Sometimes it feels worse than having a criminal history – the minute Hep C is mentioned, you are judged.”
Sophie, who holds academic qualifications from Trinity College and Maynooth University, believes that as a society we need to do more to challenge the stigma surrounding the virus, particularly when it is often disproportionately directed toward disadvantaged groups.
“One of the biggest issues I see is that many professionals in the area think it is only a problem involving drug use and that if they treat people with drug addiction the problem will magically go away,” she said.
“As long as that attitude remains, they are not going to eradicate it in Ireland because Hepatitis C is in the general population.
“I was having a scan in hospital once and the moment the doctor saw Hep C in my notes, his attitude and tone changed – he went from being friendly to being very negative.”
Sophie’s infection was detected during a routine blood test.
Her subsequent treatment involved regular liver checks and daily oral medication for three months.
“Within a month it was gone. It was such a relief. I had a big fear of developing cirrhosis, through no fault of my own,” she said.
Sophie approached the Hepatitis C Partnership after attending a conference delivered by the organisation.
“I’ve done a lot of work in relation to the impact of stigma on marginalised groups,” she said. “The experiences I had while working with Exchange House highlighted how damaging stigma can be.”
Sophie is a peer member of the partnership, supporting others to engage with treatment, and has spoken at conferences about her experiences. She said treatment is often life-changing for many.
“I liked the work of the Hep C Partnership and I was keen to support their efforts,” she said.
“Treatment does work, at least then you don’t have to worry about it, it’s gone.”