Ross’s 20+ year journey towards hep C treatment

The new Hep C treatment gave Ross a chance to live old enough to live a quiet life… but he loves being loud about how life-changing hep C treatment can be. Ross has been clear of hep C for 5 years, and the difference has been astonishing. Ross was lucky enough to survive putting off getting treated for hep C for 20 years (even as he lost mate after mate to hep C). He tells us about how easy it is to miss the symptoms of hep C, and how much easier it is to get hep C treatment these days, even when you live out past the edges of the city.

UN: How did you find out you had hep C?

Ross: I found out I had hep C way back in 1996. I went to the doctor for a general medical checkup for a job I was trying to get. The IV blood tests said I had hep C, but the doctor didn’t really explain what that meant, and at the time, there was no cure... I was more annoyed about the fact it meant I couldn’t get the job! I didn’t end up getting treated until about 20 years later, and that involved a lot of luck!

UN: Why didn’t you get treated sooner?

Ross: I didn’t realize the effects of hep C can creep up slowly, and whenever I spoke to people about the old treatment process, it sounded really hard, so I just kept putting it off.

They said they had to do a biopsy to take a chunk of liver out for testing. And Interferon sounded hard too. A mate cured himself of hep C by getting painful Interferon injections into the stomach for 6 months... and as if that wasn’t bad enough, he was dependent on alcohol and also had to give up drinking while being treated. I didn’t think I could deal with that because I used alcohol to relieve the negative symptoms of methamphetamine comedowns.

UN: Did you have any symptoms of hep C?

Ross: Every year I got sicker and sicker, without realising it. I thought it was just a product of my lifestyle — not hep C.

Once I got cleared of hep C, I realised I was using drugs to mask the damage hep C had done. I was so run down all the time, drugs were the only way to give me energy and improve my mood. So I was always at it. I had no hope, so I just continued on with my downward spiral.

It started to take longer and longer to recover from prolonged use of methamphetamine and alcohol. It took 20 years before it got so critical that I felt tired in the mornings even when I hadn't been using.

UN: How did you end up getting started on hep C treatment?

Ross: I had started to worry more and more about the symptoms I was feeling, and a couple of mates younger than me died from it — one was 10 years younger and got liver cancer. He never wanted to get a biopsy. He put it off and off like I had. That was a shock for me.

I had grandkids, and I didn’t want to miss out on them… yet I still didn’t want to get a biopsy... then, by accident, I found out that the hep C treatment process had been improved dramatically.

In 2017, just after my mate died, I took another friend to a doctor at the hep C clinic in the city because she didn't want to go through it alone. We asked the doctor about the treatment process and I was shocked at how easy it sounded. I immediately booked my own appointment with the doctor.

UN: What was the treatment process like?

Ross: I had to wait 3 weeks for the first appointment with the doctor, but everything else was so surprisingly quick and easy.

At the first appointment, the doctor took the time to explain the whole process to me and answer all my questions and make me comfortable.

She got me to do a fibroscan and IV blood test on the same day in the pathology next door. The fibroscan to check my liver was really easy, and not intrusive.

A week later, I saw her again and she showed me the results and explained what my options were and what the treatment would involve.

I was worried the results were going to show that I had cancer like my mates... but the results ended up showing I didn’t have much damage at all. I felt like I had gotten a second chance on life.

The doctor was in a clinic on the outskirts of the city, but I lived about an hour away in a country town, so to save me having to travel lots, she organized for the rural hospital that was much closer to me to handle most of my treatment.

She gave me a prescription for 2 months of the new ‘direct acting antiviral’ (DAA) hep C treatment pills, and I picked up 1 month at a time at the dispensary at the hospital. I took 1 pill a day for 1 month, then got an IV blood test done at the hospital’s pathology and picked up my 2nd batch of pills. The doctor had pre-authorized everything (so no need to go back and forth) and I got my results the next day via phone. I was cleared of hep C after the first month, but I still had to take a 2nd month of pills to make sure. After the 2nd course I got another blood test and was still clear.

6 months later, I saw my doctor again to have a follow up test (I only needed to do a blood test because the original blood test and fibroscan had shown that I had very little liver damage).

The clinic calls me each year to make sure that I get a yearly checkup to make sure I don't have hep C again.

UN: What was the treatment like? Did you have any side effects?

Ross: The only side effect I got was some boils on my stomach and legs, but they cleared up quickly. The doctor had given me a hep C treatment hotline number to call if I ever had any questions or side effects — I called and they said the side effect was nothing to worry about.

I was working at a physical job 5-6 days a week and treatment didn’t slow me down.

I ate the same and drank the same. I still had the occasional alcoholic drink (and I didn’t feel sick when I did). Because I was working, I wasn’t really using drugs much. We were rained off for a couple of weeks and I used ice once or twice — that didn’t affect the treatment.

UN: How has getting treatment changed your life?

Ross: I started to feel healthier and happier about 1 month into treatment — and my life keeps improving.

I sleep and eat a lot better. My appetite has come back. I was barely eating prior to treatment.

I can now have a late-night drinking session and get less hungover. I wake up good as gold now.

But I also use less and less now. Since my mid-20s, I have used mainly used amphetamines, alcohol and cannabis. My use had never really been a big problem — I’ve always had a good job and supported a family — but I was tired of the scene and I felt so good without drugs and wanted to live a quiet life. When I got cleared of hep C, I moved town to distance myself from that local drug scene. Now and again I still treat myself. I smoke a fair bit of cannabis and it keeps me calm... but I am approaching retirement. I got myself decent housing so I don’t have much money. I am working lots to save, so there’s just less room for mucking about. I just enjoy the peace and how nice Reducing my drug use feels for me at the moment.

I also became a peer distributor for NUAA.

UN: What is it like being a peer distributor for NUAA? What do you do to make sure other people are safe?

Ross: I heard about the role as I was finishing my treatment. The training was really easy and I love feeling useful for other people, and helping other people not have to endure the same thing I had to. NUAA gives me a bunch of equipment and then people who use drugs (in my new local area) come around to my place regularly to get all their equipment.

I also tell each person my top 3 tips:

1. Prevent the spread of hep C by making sure all your equipment is sterile and don’t share at all. Treat every item as single use, and dispose of it properly after you have used it. Back when I was injecting in 1996, I didn’t know about hep C — everyone used the same spoon, and that’s probably how I got hep C.

2. Getting tested is surprisingly easy, and you might have hep C and not be realizing that you’re slowly getting sicker. Order a DBS kit online and it gets mailed to your door and then you mail it back to get your result.

3. Getting treated is surprisingly easy too. Young people who use drugs often say, “I’m not feeling sick, so why bother” and I say “Pretty soon you won’t be able to use as much because your liver will be sick and your mental health might be impacted too. All you need to do is book an appointment to get treated and you can start healing and then you’ll feel healthier than you have in years!”.

I also really encourage other people to become a peer distributor for NUAA (call NUAA on 1800 644 413 to find out more)

UN: Did you face any stigma and discrimination?

Ross: I have never worried about what people thought about me, but I still would try not to bring up my hep C.

I lived in a town with no Needle and Syringe Program (NSP) and the only chemist wouldn’t sell needles to people who use drugs. I would march into the hospital and ask them for equipment, and they’d usually help me. I’d go to a lone worker and tell them quietly and politely “I’m a person who uses drugs and I've got hep C”. Some people would help, some wouldn’t. I noticed that if I asked 2 workers at the same time, if 1 was open to helping and 1 was not, then no one would help.

When I started new jobs I always worried that I'd get rejected because they ask, “Do you have communicable diseases?”, and I was honest with them because it's against the law to not tick the box. And I have missed out on jobs because of it.

UN: How do you think the hep C prevention, testing and treatment system could be improved?

Ross: The treatment system seems very streamlined already — I got through without any trouble at all. I think the area that needs most improvement is engaging people who use drugs.

People who use drugs have different priorities, so they aren't focused on getting treatment. Most don’t know they have hep C.

The new DBS tests are really easy to use — one prick of the finger and 48 hours later you know if you’re positive for hep C.

But we need to make it as easy as possible for them to take the next step. The system should automatically show them the nearest good doctor with the earliest available appointment.

There should also be a hep C expert — like a travelling salesperson in a van — who comes to them and treats a bunch of people all in one day. Maybe they have all the testing equipment in their van, and the meds on them? When there’s a bunch of people in each town or region who have tested positive via a postal DBS kit, this van can then go and help a group all at one time… or visit each person’s house discretely. They should be able to start taking the first pill that day.

And to make it even more of a no-brainer, people should get given a free food voucher for getting tested and another one when they start treatment and another when they finish.

Guess what!? NUAA will have a peer-staffed van travelling in NSW in 2022-2023 supporting hep C treatment! Watch this space for further details. Also, testing is incentivised at the moment – call NUAA 1800 644 413 to find out more.