In this interview for our #PeerSupportMeans series Peer and Pharmacy Lead, Joanne*, talks about how she came to work for The Hepatitis C Trust and her work supporting people at risk of hepatitis C who are in contact with pharmacies.
What did you do before joining The Hepatitis C Trust and how did you get involved?
I was diagnosed with hepatitis C back in 2000 and cleared it in 2017. I remember when I was diagnosed I burst into tears because back then I knew nothing about hep C. I thought it was a lesser form of HIV, that’s the way it was talked about back then. The nurse said, “I don’t know what you’re crying for”, so I just got up and left. Later the doctors offered me interferon treatment – this was back when it was the only treatment available, and they gave me a long list of side effects. I had only just gotten off drugs and the side effects looked even worse so I thought, “no way, not a chance!”
Unfortunately, I never heard about the new antiviral medications that became available and this really annoys me because my doctors knew I had hepatitis C. I only found out about the new treatment through an associate. I think it is appalling that the doctor didn’t know about the new treatment and didn’t reach out to people. There will be people with hepatitis C that go to the doctors who do not know about the new treatment and the doctors aren’t telling them because they are not aware either. To me that’s shocking. I would have had hepatitis C for another 20 years had a friend not told me about the new treatment. The doctors need to be better informed because there are people who have it, who are not in touch with services and are not getting treated. If the doctors aren’t informing them they end up with cirrhosis of the liver, and that’s a serious issue and can lead to the need for a liver transplant.
Once I stopped using drugs, I started volunteering at the Sheffield Working Women’s Opportunities Project (SWWOP). It provides intensive support to vulnerable women involved in street prostitution. I went on to do an ambassador course in Sheffield drug services and that’s when The Hepatitis C Trust came in and gave a talk and asked for peer volunteers, so I signed up. After all my experiences, it is a real passion of mine.
What is it like to work at The Hepatitis C Trust?
Fantastic. I absolutely love it. I’ve met some amazing people and I like that so much of the work is peer-led – we all have this link of addiction and hepatitis C. Even though we all come at it from different angles, we have a common thread that runs through our work. When it feels as though a patient is talking to someone just like them, we have a better chance of getting them back on track. I think it’s different if they are talking to a doctor. I remember when I was trying to explain what it is like to be addicted to drugs and to have withdrawal symptoms to the doctor, and the doctor said that he understood and I thought, “he doesn’t really have a clue”. I think it’s the same with hepatitis C. I’m really open with the fact that I’ve had it and that helps break down barriers and stigma.
I’m quite open with my past; everything from start to finish. So having someone who has been there and is quite open with their past breaks down that barrier.
Can you describe what the role entails? What are the objectives of your work?
It varies from one day to the next. I’m a Pharmacy Support Lead, which that means I’m going into pharmacies where there are needle and syringe exchanges. I do antibody tests on the spot with people who might be at risk. If an antibody test comes back positive, I can put it into the machine and we will get the result within the hour. This means that we are reaching people that are not in touch with drug services and that are not interested in stopping using drugs at the moment. It’s really useful to have the needle exchange services and pharmacies on board with us to get these people tested.
I also have women on my books at the moment who are accessing SWWOP and have been tested at some point, but find it difficult to get into treatment. I think it’s because back in the 1990s women involved in sex work were getting blamed for spreading HIV, which is why SWWOP started testing women. They sent people out in a van to test the women for HIV and they tested for hep C as well. They didn’t find any cases of HIV but they did find hep C. That service stopped after the 1990s but it’s still vital to get women tested.
The issue is that it used to be men asking women involved in sex work if they want to get tested, but this instantly creates a barrier. When you ask them to get tested, they automatically think you are saying something bad about them, because they are working in the sex industry and feel you are assuming they must have a blood-borne virus. Because I’ve worked for SWWOP and the women know me and my story, they are much more likely to get tested. There’s a trust there. For example, I’ve had two women that have tested positive, but who were refusing treatment because they didn’t know the old interferon treatment had changed. But because they know me, I can have a conversation, and they know that I’m not going to tell them something that is not true. They have now accepted treatment and that’s fantastic – that’s a life saved. Since August I’ve helped get five women onto treatment. It’s an important service.
Why is having a peer-based model so important for hepatitis C care?
It’s about that connection with people. I’m quite open with my past; everything from start to finish. A woman already deals with more stigma than men when they first start taking drugs. They’ve got stigma from taking drugs and stigma from what they do to pay for the drugs. So having someone who has been there and is quite open with their past breaks down that barrier. I also think that for both men and women, the minute they know that you are an ex-drug user, they are willing to have a conversation with you – you’ve already broken down a wall and then they will have a test. That’s the best thing for me with peers, it’s that lived experience that we all share. It’s really important.
What are the most fulfilling and challenging parts of your job?
Getting someone who has been resistant to engage with treatment. For example, I’ve got a woman who was diagnosed in 2014 and she was absolutely refusing to get treated. But she is on treatment now and being able to break that cycle is so rewarding because it is so easily treatable nowadays. It’s fulfilling getting people to understand that change. I think it’s about planting a seed. They might not go on the treatment today, but then the next day they might come in and ask some questions, and then the week after that a few more. It might take time, but it’s about having patience with them and the understanding that people just might not be ready. When they tell me they are ready, then I know I’ve done my job. If I can help just one person clear hepatitis C, then it’s all worth it. It makes everything I’ve ever been through worth it, if I can help people.
I don’t really find anything challenging, but I’m new and still really enjoying it. I really feel part of a team here and I know I’m not on my own, so if there is ever an issue, I can go to them.
* Because of the nature of her work, Joanne has been interviewed under an alias
This interview was conducted by Rebecca Wilkins,
one of our peer researchers.