Too many people are experiencing stigma or discrimination because they are living with hepatitis C virus (HCV). Many don’t understand the virus or the threats it poses. People feel uncomfortable talking freely about it.
According to Hepatitis Australia, approximately 230,000 Australians live with chronic HCV. It is estimated that 15 per cent of those people have not yet been diagnosed. Left untreated, HCV can lead to liver cancer and liver failure. HCV testing and treatment is crucial to stopping the spread of the virus.
“The NSP is a perfect place to engage with a population who is the most affected by HCV,” says Hepatitis WA’s Steve Fragomeni. “In lots of ways NSP clientele are a captive audience. If you are genuine and inclusive, clients are usually happy to hear about ways to improve their health. The NSP might be one of the only health services they access where they actually feel welcome.”
Steve says it is important NSP workers understand how years of negative stigma may influence the decision of a client whether to seek testing and treatment.
“Some patients are not in the right position, or are just not ready, to deal with the process of getting onto treatments,” he says. “Some have lived with the virus for so many years it has become part of their identity. Most of their peers are the same, so it becomes a community. They have witnessed the old days of the harsher Interferon-based treatments and have consciously decided not to pursue newer treatments. They feel unfairly judged and will avoid health services because of this.”
Former drug user Sam*, 56, decided to finally undergo HCV treatment about four months ago. He was diagnosed over eight years ago, contracting the virus via needle sharing. “I went to the doctors and they gave me a blood test. They told me I had hep C. I didn’t really care about (the virus) at that time because I was on drugs,” he says.
Sam says he knows lots of other people living with HCV – mostly other people who use drugs – who aren’t doing anything about it. “Some people think they’ll be judged if they look for medical help. Others, like me, they don’t care – they’re in a different world. I doubt they’d know what to do if even if they wanted to get tested and treated, anyway.”
Despite not seeking help immediately, Sam says it was an easy decision to do so once he learned more about HCV. “When the doctors told me it takes ten years off your life, I knew I wanted to take action,” he says. “I didn’t know it was so serious. When they told me about that, the nurses and doctors were really good and supportive.”
It seems clear that there’s a need for more discussion: too many people living with HCV don’t appear to know the importance of the help available nor how to access it.
“Promoting testing and treatment in quick interventions with clients can be difficult. The only way I see for us to address this issue is for the wider health care community to continue to try and better educate people,” says Hedland Well Women’s Centre’s Rebekah Worthington.
“Clients are often not up for much conversation when they come in for a visit. We think the best and most effective way to raise testing and treatment with clients is through fit pack promotional material and through building rapport with them.”
Rebekah says Sam isn’t alone in not knowing about the types of services patients with HCV can access. “The main barrier we see from clients is the lack of knowledge of service providers and what’s available to them,” she says. “While our centre offers a diverse range of services, it may not be clear to every client how testing and treatment can be accessed.”
Rebekah says the Hedland Well Women’s NSP works really hard to create a welcoming space for clients to ask for assistance if and when they may need it. She says she has no golden rules or set of conversational tips to share; NSP workers should simply strive to create the safest space possible.
We try to make it clear we’re here to assist clients in any way we can,” Rebekah says. “Those who feel most comfortable in coming forward with questions about treatment and help are the clients we’ve developed a relationship with over time.
*name changed to protect privacy.
– Evan Young
Compared to the old treatments, the new direct acting antiviral medications for HCV are:
- More effective – resulting in a cure for 90-95 per cent of people
- Taken as tablets; with very few side-effects
- Taken for as little as 8-12 weeks in most cases
- Interferon-free for most people.