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Hep C and me: 'I was nauseous all the time. I couldn’t gain weight. My skin was itchy and raw'

Ireland can be Hep C free starting from today, writes Patrick Gallagher.

WHEN I WAS diagnosed with Hepatitis C in the 1990s I was told I’d loads of more serious problems I had to deal with first. I remember getting the result and the doctor turning to me and saying, Patrick, it’ll kill you in 30 years so don’t worry about it.

I was using drugs. I’d washed up to an addiction service, exhausted from the drugs, exhausted from the chaos of it all. I was tested. I was given advice that at the time that somehow made sense.

Thirty years? The doctor was right. That was light years away. For me, back then, 4.30 in the afternoon was light years away, never mind three decades down the road.

Silently attacking my liver

So I didn’t worry about it. I didn’t think that I had to do something about this virus that was inside of me. This virus that was silently attacking my liver over years and years.
But then the reality of Hepatitis C hit me. I got sober and I got sick.

Or maybe I just realised how sick I actually was all along, and how debilitating and devastating the virus actually was. I should have been worried. I had other problems to sort out, but Hepatitis C was definitely one of them.

I was diagnosed with moderate liver disease. I’d hate to think what chronic liver disease would feel like. I could barely get out of bed. I was nauseous all the time. I was constantly getting secondary infections. I couldn’t gain weight. My skin was itchy and raw.

I finally started treatment

I look back now and realise how lucky I was that I finally started treatment for the virus. When I say my life has been revolutionised since I walked into that clinic and took my first tablet for the virus it’s no exaggeration.

I’m working, teaching every day. Yesterday I got up at 7am, went to work and came home at 7.30pm after a heavy programme of tutorials, meetings and project corrections.

With Hepatitis C this would have been unthinkable. But now that I’m free of the virus, yesterday I could watch the telly after I came home and feel normal. Feel like everyone else. Feel like I can get up tomorrow and do it all over again.

And that’s when I think, why are we still accepting the fact that people are still living with this virus?

A virus that is almost 100% curable

Hepatitis C was only recognised in 1989 but now, it’s a virus that is almost 100% curable. That’s quite remarkable. There are many other illnesses and viruses that we have not conquered in this same way.

So Hepatitis C shouldn’t really even be an issue anymore. And yet, thousands are walking around our streets today with this virus. In Ireland, estimates are that between 20,000 and 30,000 people are infected. I was at a seminar during the week where a renowned doctor said that this number could be pushed up by at least another 10,000 people who have come into the country with the virus.

So, conservatively, we have 30,000 with the disease. And we have treated 2,000 with another 1,000 on the waiting list over the past few years. My question is where are the other 27,000? Why aren’t we treating these people as a matter of urgency?

I was once marginalised

I’ll tell you why. Because many of them are people who inject drugs, or who have a history of injecting drugs. And a significant number are people who are homeless. The politically correct among us call these people the marginalised. I was once one of the marginalised.

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But the thing we forget with our nice labelling is that the marginalised are people too. And the marginalised have friends and communities, people they trust.

When I was using drugs I had three very close friends. Contrary to stereotypes we were actually quite normal ‘marginalised’. We had jobs. We still have jobs. Marginalised people are not just people going nowhere.

Life may be chaotic, but life is not worthless. To find these 27,000 people and to eliminate Hepatitis C from Ireland – something that’s very doable – we have to not just treat people for the virus, we have to seek them and then treat them.

We have to take the diagnosis and treatment of Hepatitis C out of hospitals and into our communities to where those most likely to be infected live, visit, go for support, go for clean needles, go for methadone.

Nobody knew about Hepatitis C in the 1980s and 1990s. That’s still not an excuse for my choosing to take a doctor’s ill-advice when I was first diagnosed. But we do know about it now. We know that it can be cured. And we know it can be eliminated. So what are we waiting for? Ireland can be Hep C free starting from today.

Patrick Gallagher spoke at an international seminar during the week called A Vision of Elimination: Stop Hepatitis C, organised by the Hepatitis C Partnership.

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