Aunty Libby says: “Get tested! Get treated!”

Aunty Libby.

Hep C isn’t nice. It makes you feel permanently sick and run down. If left untreated it can lead to some nasty conditions like cirrhosis of the liver. That’s why we think getting tested and treated is a good idea. There are reasons, however, why people might be reluctant about getting treated. Before 2016, the main treatment was Interferon. As Aunt Libby — an Aboriginal elder and grandmother of 13 (soon to be 14) — explains, that treatment could feel worse than the illness it was curing.

The good news is that the new treatment (a box of pills called “Direct Acting Antivirals” or DAAs) is much easier: fewer pills, no injections and much fewer side effects. Furthermore, they are free or cheap, and if you get reinfected you can do the treatment again — as many times as you need to (although we also recommend safer injecting practices to try and avoid infection). Aunt Libby has had both hep C treatments. In this article she compares the 2 and says, “I’d recommend this treatment to anyone. But Interferon, they can forget about that one!”

[Editors’ note: Users News does not normally identify our peers, but Libby was keen to use here real identity because, as an Aboriginal elder, she wants to get the message out to her community: getting tested and treated for hep C is now easy!]

I was in jail. I got 5 years, 3 years in jail and 2 on parole, because I was a drug courier, so I learnt my lesson there. This was my first time in jail. I was 49 at the time and my kids had left home, so I didn’t have problems with Child Protection, which was one good thing. The young ones they put in my cell with me kept talking about their experience of their kids being taken, which was really sad.

On the outside I just walked around with my hep C, I didn’t have the time think about treatment or anything. Then when I was in jail I thought: may as well give it a try. I had the blood test and it came back positive. I was put on 17 tablets a day because I had a whole lot of virus in my system.

I had my first dose and I thought it was going to kill me! I was doubled up in pain. That Interferon was worse than ODing, even worse than giving yourself a dirty shot! I took all the medication back to the clinic in the jail and I put it on the table and said, “That nearly fucking killed me!”

I didn’t even take my next morning’s dose. But I changed my mind and ended up sticking to it. It took me a couple of days to think about it. All the girls in jail were saying, “Do it, Aunt! It’s good for you!” And then I thought (I think I only had 3 grandchildren at that time) that I’d like to be around to see my grandchildren, spend more time with them.

So within that first week I went back on it. I was in at Silverwater when I started and then I went for 12 months on the treatment. It was just disgusting. All my body was churning and changing. I was having 17 tablets a day plus an injection in my belly every week. It was horrible.

The 2nd time I was tested and treated for hep C was here in Newcastle. I’ve cleared it for a 2nd time. I had the tablets for 3 months. I got tested in the hep C van, the NUAA community hep C van that goes around. [Click here to find out about NUAA’s Peers on Wheels van]

So I went and had a blood check. I was waiting but I had a few of my grandchildren with me, so I had to bring the baby home to get a bottle and go back for my results. But then I had to have the test again because the results didn’t go through properly.

But I’m glad I did go back because I found I had hep C again. I had another test done, you know the prick in the finger. Much easier and less painful than them having to find a vein! It was really quick, instead of waiting a week and then going to the doctor for the results, you get the result within the hour. That’s one good thing about it.

Then they took me around to get the hep C treatment straight away. I got the script for DAAs and got the pills. It was heaps better than the Interferon! That was like a killer’s drug, that one! If you want to die, go for it!

The new treatment was much easier. I got a little bit drowsy, but I was expecting it to be worse. And they made me a bit dry but just had to keep my fluids up. I did get a bit tired at first. I like to take the baby for a walk in the afternoon when it’s cool and the pills did make me feel a little tired when I did that. And because I was going through menopause as well, I’d sometimes get a bit of heat from the menopause but the pills were making me hot as well.

I was on those for 3 months. Then, after another 3 months I had a blood test to see if the pills had worked. My results came back saying the hep C had cleared, so I was happy with that. And I’ve been feeling good since. So I’d recommend this treatment to anyone. But Interferon, they can forget about that one! I wouldn’t recommend Interferon to anyone, but this other treatment, the DAAs, I would.

And the government pays the $12,000 or $13,000 per box of tablets, I appreciate that. I wouldn’t have been able to pay — I’m on Centrelink and I only get $340 a week!

Further reading: POW! Breaking barriers to hep C care in the Suburbs