In late 2019, we celebrated this program’s fifth successful year, which would have been impossible without the hard work and dedication of our peer educators, who have personal experience and knowledge of injecting drug use and also have up-to-date knowledge on hepatitis B, hepatitis C and other blood-borne viruses.
Even with the COVID-19 outbreak and mass closure of services, Hepatitis SA’s peers continue to offer CNP services, with extra physical distancing arrangements in place for the safety of both clients and workers.
We asked some of Hepatitis SA’s peer educators to reflect on how they came to the job, and what rewards they find in it.
MARGIE: I became a peer worker because I wanted to help drug users get the correct information about how to use drugs and do the least amount of damage to your body and mind while doing it.
PENNI: I first wanted to be a peer worker at Hep SA when they adopted CNP management—due to the focus on blood-borne viruses, this made sense. I was already familiar with the roles of CNP operator and peer educator from previous work in the field, and really enjoyed and felt fulfilled in the position, and felt an affinity for the work and the clients. I wanted to continue my existing employment as a CNP peer along with my existing part-time peer educator role with HepSA, so I was fortunate that I could perform both roles on a part time basis, plus the subject matter overlapped, permitting me to engage in both CNP and HCV peer education work. I could bring skills from either specific role to help the other.
MARGIE: I started using in the 1980s, when the only information came from other users. There were no CNPs, no Google, so you learned from others. We bought equipment from medical supplies shops. We bought glass barrels called Blue Ladies, and boxes of tips. There was no swabbing that I can remember, and we used the tips over and over until they wouldn’t push through the skin anymore. We shared everything, though we did rinse the equipment a lot in between each use. As I owned a Blue Lady I got to go first—a big plus.
When I moved to Sydney there was one chemist to get equipment from, in King’s Cross. Police sat outside taking photos of everybody going in and out, so we would go as little as possible. We all shared equipment. Nearly everybody I knew had what was then called Hep Non-A Non-B, which we now know is hepatitis C. We had no idea you could get different strains—they didn’t have a name for it or any information. Then AIDS hit and sharing became a game of Russian roulette. Many didn’t win.
Then in 1986 the first needle exchange—that’s what we called them—came in. It was a life-changer. Not only could you get new equipment, you could get advice and information. If I remember correctly it was in an old police station! At that time I asked if I could volunteer there because I thought it was an amazing service. They didn’t have peers at the time so I was given the job of making up 10-packs. I didn’t last that long as I was put in a room alone and, to be honest, I got bored.
Life moved on and I didn’t really think about working in CNPs or being involved until I came to South Australia. I was told about SAVIVE and started volunteering there. It was great to be around people that felt the same about treating drug users with respect and offering as much information as I could to keep them safe. When a job came up at Hep SA as a peer educator, I jumped at the chance to apply.
SUE: I had been a peer worker for about 10 years when the AIDS Council, which used to fund the SAVIVE and SIN injecting drug programs, closed down, so I came to work for Hepatitis SA.
Being a peer worker fulfilled me with work that I found myself good at. I have learned to listen, and to give the clients some referral advice in the areas that might help them. However, I cannot do the job for them, and I believe we need more advocates to assist people lost in their own depression or lifestyle choices. We peers have all been around for a number of years now, so we have all have a great rapport and trust with our clients.
When I was cured of hepatitis C in 2016 with the new direct acting anti-viral pills, I was surprised at the enormous relief I felt when I was given the result: “hep C not detected”. A weight remarkably lifted off my shoulders immediately. Having lived with hepatitis C for more than 27 years, I had not realised the weight I had been carrying around—the of feeling being infectious.
I noticed this further when I had my first nose bleed after being cured. I’ve had nose bleeds from time to time but this one felt strangely freeing. I enjoyed being able to bleed and not worry about where the blood had dripped—bagging up my tissues, scrubbing my hands and the surfaces, to ensure no-one else would get my blood into their blood-stream somehow. Of course I still did all those things but not with the sense of urgency or worry.
I have really enjoyed that sense of freedom since being cured.
I can’t help feeling like I have swapped out one virus for another
Now with SARS-CoV-2 and the impact of COVID-19 on our most vulnerable community members, it is all reminiscent of when I had hep C.
I can’t help feeling like I have swapped out one virus for another. I don’t have COVID-19 (yet!) but I can’t help feeling those same infectious feelings and worry. Knowing that COVID-19 can transmits from one person to another while people feel well, really worries me.
Again, I am walking around feeling infectious. I am more aware of it with COVID-19 because we should all be aware of it. Practising social distancing, constantly washing my hands for the recommended 30 seconds, maniacally singing happy birthday (in my head) twice to ensure that all traces have been washed away, desperately trying not to touch my face, staying 1.5 metres away from everyone, not shaking hands, opening doors with my elbow. Observing surface protocol: wiping door handles and regularly used surfaces with 70% alcohol.
When I had hep C, even though it didn’t feel that way, the reality was that it was the responsibility of all to use universal precautions to prevent hep C transmission. With COVID-19 it is different. People should be responsible for themselves in that way but it goes further, it is about protecting others. It is about ensuring others don’t get it.
I read somewhere that epidemiologist had projected that between 20 and 80 per cent of Australians may get COVID-19, that 80 per cent of them will experience mild symptoms of COVID-19, 20 per cent will need hospitalisation and five per cent will end up in intensive care.
…I feel the weight heavily on my shoulders, to ensure people that I have contact with are not infected with COVID-19 as a result of that contact with me.
At the time of writing, the death rates for this virus had ranged from 0.7 per cent to 3.8 per cent*, depending on whether our health services can cope with the number of people needing care. Even at an optimistic one per cent mortality, the number of people in this country who might die from COVID-19 could be between 50,000 to 180,000.
With prevention being our best protection until an effective vaccination is approved (when? 6-9-12 months from now?), I feel the weight heavily on my shoulders, to ensure people that I have contact with are not infected with COVID-19 as a result of that contact with me.
There are many people in my life who are pre-disposed to complications and higher risk of death if they were to get COVID-19. One of the most important people in my life is aged 76, has hypertension, diabetes and a vitamin D deficiency, and is on non-steroidal anti-inflammatory medication. Five things that make it more likely that she will be at a higher risk of death from COVID-19. I don’t want her to get it and I don’t want her to be one of the people who ends up in critical care if the number of people in South Australia requiring health care exceeds the capability of our health care system.
I feel weighed down with trying to do all I can to drive down the rate of new infections but that’s ok, thankfully I had room on my shoulders because the weight of hep C had gone.
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Source
*https://www.worldometers.info/coronavirus/coronavirus-death-rate/
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