Why aren’t people in rural areas getting the new ‘game-changing’ hep C treatments? | Katrina’s Story
Katrina is a peer distributor for NUAA in a small rural town in NSW. She’s known she’s had hep C for 6 years but has found it hard to get treated because of the lack of services in her area and past experiences of stigma within a health care setting.
Luckily, she's asked NUAA for help and we're helping her get access to treatment! If you want help, call NUAA’s PeerLine on 1800 644 413. Users News interviewed Katrina to help her share her story, and we hope it helps other people speak up about the barriers they face to getting treated to ask us for help to get treated.
UN: How did you find out you had hep C?
Katrina: It was horrifying. About 6-8 years ago I was in a hospital on the fringe of Sydney. I was pregnant and about to be put into labor. I was super not with it and this doctor took blood out of me without me realising and she went and tested it without my consent. She came back and blurted out in front of me and my mate, “Did you know you have hep C?”. Luckily my mate was cool – but what if it was my mother?
After I gave birth, the staff brought me my daughter’s ‘blue book’. Where my name was meant to be, they had written ‘Miss hep C’. I was disgusted. I knew they were wrong to stigmatize me, so I just asked them to change it (thankfully they did) but I never took the complaint further.
Then, for the changeover between staff, they said in front of everyone “She’s only just found out she's got hep C, we need to make sure she doesn’t contaminate the baby by breastfeeding.” It left me with a distrust of health professionals and put a dark stain on an otherwise beautiful birth.
UN: Why haven’t you been treated for hep C?
Katrina: I've lived in a few different rural areas over the last decade and there’s a lot of stigma and discrimination towards people who use drugs and people with hep C. There aren’t enough good options out here for treatment.
The community health centre in my town has squeezed all the health services into one building. The methadone clinic, counsellors, doctors, pathology, pharmacy and dentist all share one waiting room. It’s impossible to go to a health service without running into someone you know, and I know that gossip would spread around if I went there for hep C. That fear stopped me from doing a fibrosis scan (which is necessary to see how damaged my liver is to see if I can handle the treatment medications).
I used to take my kids to the dentist and the dentist’s receptionist once watched me in the waiting room to see who called me in. She saw me go in to see an alcohol and other drug (AOD) counsellor. I used to get along well with the receptionist, and I felt so ashamed when I saw the look on her face that asked, “Is it true that you’re an addict?”.
To protect my kids from that sort of shame I made sure I never had to go to the methadone clinic. Instead, I just bought illicit methadone from a dealer. I never went onto the Opioid Treatment Program (OTP) because I was worried other parents would see me at the clinic and they would get their kids to say awful things to my kids, such as “Your mum is a junkie”.
I moved town a few years ago because my house burnt down, and my 6-year-old daughter died. The police found syringes at the scene and it led to false rumors that the fire was from a meth lab. People spread gossip all over our community’s Facebook. So many people knew my partner and I used. They blamed me for my daughter dying. It was the worst time of my life. We moved away to get away from the assholes and painful memories.
I already feel completely unwelcome in my new community. People know who I am and see me as “Another one of them junkies”. But I’m not a “junkie”. I am not a stereotype. I am a person who is dependent on drugs, and I take responsibility for my use and never hurt other people. I don’t want my community to find out I have hep C because I really don’t want to deal with any more stigma.
I avoid getting blood tests done at the pathology service. I’ve got diabetes, and I need to get tested to see how my insulin is going, but I haven’t been to pathology in over a year because I’m scared of them judging me for having hep C and outing me. When I tell them I’m a person who uses drugs they look disgraced. I have one vein I keep healthy for them, because if they can't get a vein within 2 jabs, they have to send you to hospital (which is a major hassle for me because the hospital is ages away). The pathologist once said, “You’re the first person in 5 years I can't get a vein in”. I think she wasn’t skilled enough, wasn’t trying hard enough, didn’t think I was worth caring for and was happy to put the blame on me. She only got a vein after I begged her to try again.
The doctors out here are unreliable too. Most are new and only here for a few months before they move. And there are long wait times to see the good ones.
UN: Have the new hep C tests and treatments changed much for your area?
In the town where I live now, I don’t know anyone in my area who has been treated for hep C using the new Direct-acting Antivirals (DAAs) treatment. I’ve heard the treatments are “game-changers”, and you only need to take DAA pills for 2-3 months and it’s much easier than the old ‘Interferon’ treatments. I know you only need to get a ‘fibroscan’ (a.k.a fibrosis scan) done, which is an ultrasound of your liver. That sounds much easier than how they used to need to take out a chunk of your liver for testing. But to get a fibroscan I’d have to go to a hospital over an hour away.
I’ve been trying to get everything together to do it and get treated, but the whole thing has been starting to feel like it's not possible around here because we can't connect with the services. I was starting to think I would not get rid of hep C — not until I'm sicker or it’s easier to do. Luckily, I asked NUAA (who have been providing me education and training around hep C) if they could help, and they are now organising some innovative alternate pathways to treatment that mean I don't have to see a GP.
Seeing a GP about hep C has been a real barrier for me. I don't want my usual GP to find out I have hep C, because I get along with him pretty well and he prescribes me benzos and if he found out I had hep C, he’d I’m afraid he would realise I’m an illicit drug user and he’d stop prescribing me benzos. All the other local GPs are even more discriminatory and incompetent — they wouldn’t even prescribe me benzos when my usual GP unexpectedly went on leave.
I did one of those new quick and easy finger-prick “Dried Blood Spot” (DBS) tests a while ago and it came back positive for hep C. But it didn’t make getting treated easier because I then still needed to see a doctor to get a referral to do a more detailed IV blood test and fibrosis test, and then go back to the doctor again to see what treatments they can give. And then I’d have to go to the pharmacy at least twice to pick up the DAA pills. And I’d also have to visit pathology to get blood tests throughout the treatment. Getting treated out here requires too much driving back and forth, and each different place I go to increases the risk of facing stigma or being outed.
I am also afraid to tell my workplace I have hep C, and I can’t afford all the time I need to take off work to visit the health services. I know serious side effects from the DAA medications are rare, but if it does make me sick, I don’t want to go to work.
The catch-22 of hep C is that even if you know you have it, you might not have the energy to treat it. If your hep C symptoms aren’t overwhelming you, then you aren’t motivated to treat it. And if your hep C symptoms are overwhelming you, then you don’t have the energy to treat it.
UN: Do you have any hep C symptoms?
Katrina: I feel tired a lot. I lived with hep C for many years before I knew, so it's hard to remember what I used to be like. And I use downers such as opioids and benzos, so it is hard to tell what’s making me tired. I also think my workplace is making me tired, but maybe it’s hep C?
UN: What would you do differently next time? And how else has having hep C changed your life?
Katrina: Getting hep C inspired me to work with NUAA as a peer distributor of equipment for users. It is such a good feeling knowing I can save people from getting hep C or HIV. My house is called the ‘Clinic House’ now. When I give out needles, I talk about hep C, and how to get people treated. And I am lining people up to get DBS tests. Lots of Aboriginal people get equipment from me and they hate the health services. If it wasn’t for me talking about hep C, they would not have even thought about getting treated.
The top tips I tell people are:
1. “Don’t share ANY used equipment (including tourniquets!). You can take as much equipment from me as you need, or NUAA’s NSP can mail you a discreet package for free anywhere in NSW — order online via https://shop.nuaa.org.au/ or call (02) 8354 7343”
2. “You might have a bloodborne virus (such as hep C) and not know it — but you can get tested and treated”. I tell them 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. I tell them they can get a DBS test kit from me or via https://www.dbstest.health.nsw.gov.au/. I tell them the new DAA treatments are better than the old Interferon treatments. DAAs are just 1 pill a day, and only take 2-3 months to clear hep C and there are fewer side effects. I encourage them, but I’m also realistic about how hard it can be to get treated out here.
3. “Carry naloxone with you so you can reverse an opioid overdose. You can get it delivered discretely for free via NUAA’s NSP postal service — order online via https://shop.nuaa.org.au/ or call (02) 8354 7343”
I also really encourage other people to become a peer distributor for NUAA (call NUAA on 1800 644 413 to find out more)
UN: How do you think the hep C prevention, testing and treatment system could be improved?
Katrina: I see a lot of people get their DBS result back and they feel shame that it is positive and then stuck because it is so hard to get treated in our area.
There needs to be more services and less stigma. Health staff and the wider community need to be educated about the harms of discrimination so that no one has to feel ashamed of having hep C. But that shift will take a long time.
In the meantime, there needs to be a more private way to get treated. If your DBS test comes back positive, a van should come out and treat you all in one go. The van should give you an IV blood test, fibrosis test, and DAA medications. The one person who treats you should then be the only person you have to deal with all the way through. That ensures you feel your confidentiality is safe, and that you are cared for.
I think it’d be best if the van was discreet & disguised, and it goes straight to your door. I don’t want to be seen visiting the van. I don’t want to have to line up with other users.
There needs to be more engagement with users so that they know about hep C and DBS tests and how to get treatment.
Call NUAA 1800 644 413 to find out more, or to get help accessing testing and treatment in your area.
UN: Guess what!? NUAA will have a peer-staffed van travelling in NSW in 2022-2023 supporting hep C treatment! It will be travelling around Hunter New England from July – follow NUAA social media or sign up for our newsletter here https://nuaa.org.au/contact for further news.
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