I said, “I'll use more drugs and deal with my hep C tomorrow.” But tomorrow turned into 10 years. | Kate’s story
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Kate is a proud Aboriginal woman who has a history of injecting heroin. She wants to share her unique experience of clearing hep C twice, nearly 2 decades apart. Her first treatment was in prison in the early 2000s, with Interferon. Soon after she got out of prison, she got hep C again and didn’t get treated until 2019. Getting treated a second time has been lifechanging for her and she now supports peers with hep C and drug use.
UN: Kate, why do you want to talk to us about hep C?
Kate: I’m a proud Aboriginal woman and I’ve had the unique experience of clearing hep C twice, nearly 2 decades apart.
I’m 48 years old and have a history of injecting heroin from the age of 14. About 3 years ago, I made the decision to stop using it. I was hep C free for the second time and feeling healthy and positive. It made sense to me to change my drug use at that time – and change my life.
The first time I was treated for hep C was in prison in the early 2000s. That time I cleared it with interferon. Then, soon after I got out of prison, I got hep C again. At that time, due to the costs of treatment and the levels of stigma and discrimination, anyone who was still injecting or found themselves with hep C again, regardless of the reason, was not able to be treated a second time. Not to mention I didn’t want to face interferon again. It took a long time before I was ready to face treatment again.
Things changed in 2016 when the new ‘game changing’ hep C medications called “direct-acting antivirals” (DAAs) became available. People with lived or living injecting drug use were invited to be tested regularly and treated as many times as they needed it. This was thanks to a decision by Australian governments to invest billions of dollars into getting hep C eradicated across the nation.
I heard about the new treatment in 2019 and put my hand up straight away. Getting treated again has been life-changing. Now I work with NUAA to help peers get tested and treated for hep C, as well as supporting them around any issues they have with their alcohol and other drug use.
UN: What was it like way back when you first found out you had hep C?
Kate: When I was 16, I went to the doctor for a general blood test. I told them I was a drug user, so they automatically tested me for hepatitis. I had no idea what hep was. The doctor said I had ‘non A, non B’ hepatitis — which is what they called hep C back then when they didn’t know much about it. I was terrified to ask for more info because I was on methadone at the time. When you are on the Opioid Treatment Program, it’s best to make sure that you don’t make waves – which means not giving anyone a reason to think you might be using, even occasionally.
It was also hard to tell my family. When I told them, they were funny to me, they wouldn’t hug me or kiss me or use the same towels. It was scary for them because back then no one knew much about it, including how it could be passed on. They shamed me for it, and said “If you didn’t use drugs you wouldn’t have got it”. I said, “I know that, but I need your support, not your shame”. The elders in my family didn’t give support. Others in my family who were also using helped a little but couldn’t do too much in front of the elders. Chances are, they had hep C too, and I wish they had been able to come out about it in solidarity with me.
UN: How did you get your first treatment for hep C?
Kate: After I found out I had hep C, I didn’t do anything to treat it. My life was very chaotic and I had no support. There was no treatment available then.
In 1995, when I was 20, I went to prison. I was in there for 14 years.
In prison, there were Justice Health doctors specialising in hep C support and they helped get me treated on interferon – the only treatment then available. It absolutely helped that my life inside was stable enough to stick with the treatment long enough to clear hep C. And, believe it or not, the prison officers and Justice Health doctors and nurses were terrific. Interferon had serious side effects – vomiting, diarrhea, headaches, hair loss, exhaustion, back pain, dizziness and depression. So the doctors asked the guards to “Be lenient on the people getting treatment, because they will get sick”. They listened and they were nice — they let me stay in bed.
UN: Tell us about getting hep C for the second time.
Kate: I was hep C free when I was released from prison in 2009. My uncle — a drug user with hep C — went into prison around the same time. I was cleaning up his room and got a needle stick injury. I got tested at my local GP and it came back positive.
The GP at the inner-city medical centre I went to didn’t believe me when I said it was a needle stick injury. He said, ‘Are you sure that you haven't shared a needle?’. I wasn’t offered treatment or counselling. This was a doctor I was getting Xanax from. He had heaps of clients who had a drug dependence, and he would hand out Xanax like there's no tomorrow — but he didn’t want to deal with people with hep C. I felt angry and upset. I felt uncomfortable going to another doctor at that surgery, because it seemed like they were all anti-drug users.
At the time, I had a drug dependency, so getting treated for hep C wasn’t my highest priority! I decided to ignore my hep C problem because I didn’t have the time and I didn’t think I’d be able to find a good doctor. Also, I had been through interferon treatment, and I knew how painful it was. I just thought ‘I can't do that again!’.
I had the attitude of ‘I'll use more drugs and deal with my hep C tomorrow’. But tomorrow turned into 10 years.
UN: How did having hep C affect your life — what were your symptoms?
Kate: For many years I thought something was wrong with me — but I didn’t realise it was from hep C. I used to feel like I was depressed. In 2019, after I got treated, I realised how much hep C was mucking up my body and mood. I used to be so irritable and cranky. I was always tired and lazy and getting headaches, and my legs would swell up. Everything in my brain was jumbled.
I knew how serious hep C could be because I have 2 uncles in their late 50s who never got treated, they have liver cirrhosis now and one of my uncles has just been diagnosed with cancer which has spread from his liver to his lungs. He once started hep C treatment in prison but was released halfway through, so he never completed treatment and never cleared the virus. He has been slipping through the cracks everywhere his whole life.
They are both very ill — swollen up with fluid. The doctors can’t do anything for them now. The liver specialists say it's too late to get treated for hep C because the damage to their liver is now too severe. If they got treatment when I did, they would be fine. They have lived really challenging lives. I look at them and look at me now and I realise how lucky I am by comparison.
[UPDATE: Shortly after this article was published, Kate asked us to include this message: ‘On 22 Dec 2022, one of my uncles lost his battle with liver cancer from cirrhosis from hep C. He is one of the biggest reasons I'm so passionate about helping others through my job at NUAA, and I’m so glad I get to honour him forever in this interview!’]
UN: How did you get your second treatment for hep C? And how did interferon and DAAs compare?
Kate: In 2019, the public methadone clinic I was at put a poster up saying “Are you hep C positive? We're running a new hep C treatment program, sign up now”. Only 3 people showed up, but I was one of them. Once we did the treatment and got cured, we told other people how easy it was and 30 people came in the next round! I think a lot of those people thought the new DAA treatments would still be like interferon, and they only came forward once we said, “It's nothing like interferon”. If the clinic hadn’t put that poster up, it might have taken me a lot longer to get treated.
Back in the bad old days, a health worker needed do a ‘biopsy’ where they take a sample of your liver for testing before you were put on interferon. That is a bad memory. The hospital doctor didn’t give me a local anesthetic before they took out the chunk. It was so painful. Luckily, the prison’s deputy governor accidentally witnessed it and wrote to the prison to complain, so I hope that never happened to anyone else again!
This time, I only had to get a ‘fibroscan’ to check out my liver, before I was given the green light for DAAs — it was so easy. No pain, no chunks taken out of me! The nurses even brought the fibroscan to the methadone clinic, so it was extra easy. On day 1 of the program, they took blood from my veins for a test. 2 weeks later, the liver specialist had a talk with me, and the next day, I started treatment. If I'd had to wait longer, I might not have stuck with it. A lot depended on them getting me on treatment when I was ready and in the right frame of mind.
I was coming in to get my methadone every day, and they gave me the DAA hep C pill at the same time. I could have taken a month’s worth of medication home at the time, but it was useful to do it with my methadone so I didn’t have to remember when to take it.
With DAAs, I had no side effects. Many people don’t have any side effects, and at the most people might get 1 or 2 minor side effects. This was so very different from interferon, when I was so sick I thought I was going to die. My hair fell out. It was so bad I almost quit the treatment a few times.
With DAAs I started feeling well around the 4-week mark. I stayed on treatment for 3 months and the hep C virus was cleared.
UN: How has clearing hep C changed your life?
Kate: I’ve been free of hep C for about 3 to 4 years now, and my quality of health is now 9 out of 10. Even a month into taking the meds, I could feel my brain fog lifting. My doctor said a few other patients had mentioned similar stuff. A foggy brain can send you into depression. I’m now thinking more clearly because my body is working better. I have energy now and can do so much more. Now that I think back, I have not suffered any depression since I got treated in 2019.
Being cured helped me start looking after myself in other ways too. I'm eating healthier and sleeping better and exercising and that’s improving my mood and mental health even more.
Once I got treatment, it became easier to stop using drugs because I felt healthy and energized and happy. I was also scared of being reinfected. Even though I know how easy treatment is now, I didn’t want to go through treatment a 3rd time.
Another major change in my life was getting a job at NUAA, where I use my lived experience and hard-won expertise to help other people who use drugs overcome stigma and barriers to healthcare.
UN: Have there been any barriers to hep C treatment or have you faced stigma or discrimination from healthcare workers in the process?
Kate: I have regularly felt judged by doctors and nurses. I think if I was a middle-class white woman who had hep C, but had never injected drugs or been to prison, I might be treated better.
During my first time with hep C, I was on methadone and because I had hep C, I got put to the bottom of the list as the last person to be dosed for the day. Stigma doesn’t always come in the form of words that are spoken. Stigma is also in the way you are treated. It’s when they show you they don’t want to deal with you through their actions, using body language and facial expressions to make a point of ignoring you. I’ve felt that a lot.
Talking to a doctor about drugs or hep C is awkward and uncomfortable, and I get anxious and nervous before I get there. I’m comfortable going to a doctor about anything else. But I do face my fears and I’m honest because if I lie to a doctor then they don’t have the facts to help me.
I was in tears when I left that doctor who thought I was lying about getting hep C from a needle stick injury. I chose to go to him because I thought he’d understand, but no. It didn’t really matter how I got hep C in the scheme of things. But it mattered that the doctor used the power of his position to withhold information and life-saving treatment because he did not believe I was worthy of them. And it really mattered that instead of being believed and treated with respect, I left that doctor feeling so much shame that for the next 10 years I could not face going to another doctor because I couldn’t bear repeating the embarrassment of being judged unworthy, wrongly accused of stupidity and ingratitude – and again denied treatment. I needed encouragement to do the treatment, not discouragement and disrespect
Instead of stigma, there should be support. If someone tests positive, they should be connected with a Peer Worker who has been through it and can give advice about what to expect. I wish I could have talked to a peer or counsellor at the time about how I felt about getting hep C again, and how scared I was about getting treated again because of I went through the first time. If I had support to work through my feelings and fears and been given the correct info about my options, I may have had treatment earlier. Instead, the doctor didn’t give me any info or tell me my options, and I’m not good at researching things myself. So instead of getting the health care I deserved, I was unable to get anything done about my hep C for 10 years.
Getting people tested for hep C is important, but I would like to see more support for when people first find out they are positive. That’s when it was hardest for me. You get told you’re positive, but then you go into shock and don’t hear what the doctor is saying after that. Then you don't have time to ask all the questions that jump into your mind as you walk out the door. I remember for the first few days after, I was freaking out thinking “Am I going to die?!’. I felt isolated and I didn’t want to tell my family again because they would judge me.
When I finally got to speak to a liver specialist, she took the time to sit with me and explain stuff, and it made such a big difference. Everyone deserves to be treated well like that. My journey has made me passionate about helping people who use drugs get the compassionate, respectful and competent health care that everyone deserves.
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