Kiah’s story: From DIY harm reduction in Newcastle to speaking in front of academics, doctors and nurses

Tuesday, June 25, 2024.

Kiah Glasson is a peer educator at Hepatitis C NSW. She also works with NUAA as a peer worker. This is her story.

When Kiah began injecting drugs in her late teens, figures of authority – politicians, health professionals, school counsellors and social workers – all parroted the same message.

“Don’t do drugs.”

“There’s no benefit at all to indulging.”

Like many Australian kids, Kiah rebelled and it was a group of mentors who taught her the ropes. They were an older cohort, mostly heroin users. Some had already been through a bout of hepatitis C. 

“They guided me a lot,” Kiah tells Users News. “They were really across the importance of using clean equipment.”

It just so happened that the place in Newcastle where she’d meet this group and kick back was a block away from an ACON needle and syringe program (NSP), a rarity back then for a regional city like Newcastle. It was her first exposure to formal harm reduction practices.

Soon after this, Kiah entered a long period of abstinence. She’d fallen pregnant and decided to cut the drugs.

When she got hit with “the triple whammy” – an unhealthy romantic connection, a breakdown in her family relationship and “an asshole boss” – she started to get on the gear again. As Kiah shifted towards more frequent use of speed, ice and heroin, she began to pass on the torch, taking on a mentor role in her social circles. Without realising it, she’d taken on the role of what people in the AOD sector today like to call a “peer”. That is: someone with lived experience of drug usage and stigma, someone whose been through the ringer and come out the other end with lessons to share.

“I became quite hated by the local plain clothes cops. They knew I was handing out clean equipment to people and it didn’t rub them the right way,” she says. “I was always the one people came to for advice. If they needed help, they’d ask me. If they needed clean equipment at 3 AM, they’d knock on my bedroom window and they knew I would open it and give something to them.”

Kiah was always obsessively careful. She’d never share her own personal injecting equipment. She got tested regularly for bloodborne viruses, every 12 or 18 months she tells Users News.

While pregnant with her second child, however, Kiah received some jarring news. Visiting her long-term GP after blood tests, she learned she had hep C.

It’s clear that the way her doctor chose to tell her is still a sore point.

“My doctor randomly rattled off the blood test results,” Kiah recounts. “She told me I was slightly anaemic and that I could do with a folate supplement and then she went ‘yeah the hep C well we obviously can’t treat that now but once you’ve had the baby there are new medications for that.’ I was like woah hang on. In that moment she very clearly recognised she’d given me a diagnosis with an offhand remark. To her credit, she immediately apologised.”

“The reason it sat badly with me was that she had been my doctor since I was 16 years old. I’d already gone through one pregnancy with her and throughout the most hectic period of my life I still always went back to her. I was very open and honest about my lifestyle and my choices. She was also aware of how often I tested and how cautious I was,” Kiah continues.

“When you’ve seen the same doctor for nearly 20 years, you expect they’ll remember basic information.”

Kiah took direct-acting antiviral (DAA) medication which was “a breeze” and “so quick”.

Some people are still wary of medical treatments for hep C due to the intense side effects of interferon, a previous hep C treatment. Scepticism of the medical establishment and financial barriers mean that many people don’t receive treatment, although DAAs are available at a relatively low cost for those with a Medicare card thanks to the Pharmaceutical Benefits Scheme (PBS), a government subsidy. The Kirby Institute has estimated that only 7 percent of the 79,000 Australians living with chronic hep C received treatment during 2022. 

But research has proven that DAAs are more effective than old treatments. An estimated 95 to 98 percent of people who take DAA medications recover, so it’s almost guaranteed you will be cured, and quickly! 

“Just do it,” Kiah stresses. “There is nothing to lose”.

Finding a peer worker role in the health sector

This series of life experiences led Kiah into peer work. She describes her journey into the AOD sector as a peer worker as “a trail of breadcrumbs”.

After she’d recovered from the hep C, she saw a Facebook ad for a peer role with Hepatitis NSW.

“I wrote the most balls out, open, in-your-face application,” she says. “It was the complete opposite of the kind of job application anyone would normally write. I was completely open and honest. In about 200 to 300 words, I summed up my life to that point. I got a phone call back within 24 hours.”

Kiah got the job.

“Within the space of a few months, I went from being a stay-at-home mum with a 2-year-old to standing in front of a room of about 150 doctors, nurses and midwives, talking about my life experiences and all the negative interactions I’ve had with healthcare services with the aim of reducing stigma and discrimination in healthcare.”

Kiah now works not only with Hepatitis NSW but NUAA as well. She sits on a range of committees, she tells Users News, joking that “little old” Kiah now rubs shoulders with “big wigs”.

She says she’s “pleasantly surprised” to see the level of respect given to people entering the field with lived experience.

“When I’ve had the opportunity to go to professional conferences, I’ve been spoken to in the same manner as the professors up there presenting 5 years' worth of hep C eliminations stats. They’re lifetime learners and they have a list of achievements after their name on the page the length of their arm.”

Kiah now uses her own experience to educate others.

“What I find useful now, especially in point-of-care testing where you get a hep C result in under an hour, is that I’m often there when a positive result is delivered to a person or another peer is.”

“It helps to have a person with lived experience present explaining there’s no point sitting there, freaking out and questioning everything you’ve done for years,” Kiah says, emphasising the importance of staying positive and avoiding blaming yourself or anyone around you, which can happen when someone gets a hep C diagnosis. “We live in a world where it’s an extremely treatable condition,” she says.

Kiah holds little back while chatting to Users News. She says she was homeless and living out of her car prior to getting the job at Hepatitis NSW and recounts losing custody of her first kid, sparing no details. But this article isn’t about a traditional redemption arc narrative. There’s certainly no redemption needed in the first place. Kiah is an open book not because she’s unaffected by her struggles but because she owns them.

In many ways, Kiah’s life has come full circle. Since she was a teenager, she’d had a desire to work in an area where she could stand up for the little guy. At first, she thought she should become a lawyer but she quickly realised that involved “way too much concentration” and excelling at school, a place that didn’t capture her attention or work for her lifestyle. She also considered social work for which the barriers to entry aren’t quite as ridiculous.

In the end, she found a job in drug harm reduction, an area where she can help people just like herself. Crucially, she’s not just proud of where she is now – she’s proud of where she’s come from.