It affects 118,000 Australians and Kelly had been at risk since she was 15, but no one spoke to her about this dangerous condition until it was too late.
“It’s still a difficult thing to talk about,” she tells 9honey, “because the only way you can really catch it is by doing things that are unsafe.”
At just 15, Kelly fell into drug use and struggled with substance abuse.
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Needles weren’t always clean but she didn’t learn how far-reaching the consequences of that one tiny detail could be until years later.
Just before she turned 31, Kelly went to rehab and learned the shocking truth.
“I’d been using intravenously for at least 12 years before I got to my first rehab, and one of the requirements was to do a blood test,” she recalls.
“And that’s when I came back positive for hepatitis C.”
Hepatitis C is an inflammation of the liver caused by a bloodborne virus (hepatitis C virus, or HCV) that can spread through injection drug use, unsafe health care, sex, etc.
Because Kelly had been using drugs for so long, doctors couldn’t say how long the virus had been silently coursing through her bloodstream.
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“They said there’s no way of knowing exactly when I contracted it,” she says.
“I didn’t know what it was, or how it would affect me long-term if I didn’t do anything about it.”
Hepatitis C can present as anything from a mild illness to a serious, lifelong ailment that can lead to liver cirrhosis, cancer, and possibly death.
About 50 million people worldwide have chronic HCV infection, with an estimated 1 million new infections and hundreds of thousands of deaths recorded each year.
Though there’s currently no effective vaccine against hepatitis C, it can be cured in 95 per cent of cases with appropriate medication.
But Kelly was too “embarrassed and ashamed” to seek treatment.
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“I didn’t tell anyone,” she admits. “My partner had just died, so I didn’t need to tell him, and I didn’t really have any friends. I certainly didn’t want my parents to know.”
Homeless and heartbroken, was referred to a Sydney hospital for treatment but put it off for years.
Hepatitis C can cause fever, fatigue, loss of appetite, nausea and vomiting, abdominal pain, changes to bathroom habits, joint pain and jaundice, but because Kelly was asymptomatic she ignored it.
The next few years saw Kelly attempt rehab and fall back into drug use several times over, silently struggling with the stigma around her illness the entire time.
It was only when she joined a 12-step recovery program with other Aussies that she finally understood she wasn’t alone.
“The thing that helped me was listening to other people who have been in my shoes,” Kelly explains.
People who had been diagnosed with hepatitis C and cured it with treatment opened up about the medications they took, explained that side-effects were limited and that it was all covered by medicare.
Stigma had held Kelly back from getting help for so long, but those conversations finally gave Kelly the strength to face her diagnosis and do something about it.
“HCV is not a moral failing; it is a virus and should be treated as we would any other chronic disease.”
She started a medical trial and “just fronting up for the appointment and doing something positive” for herself after years of denial felt so good, Kelly stuck it out.
It was the act she’d been putting off for years, and the best thing she ever did.
“I eventually got clean without going to rehab [and] cleared hepatitis C. My life is completely different now,” she says.
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Stigma held her back from treatment for too long and after getting clean and cured, Kelly turned her focus to helping other Aussies suffering in silence.
Today the 55-year-old uses her own story to start tough conversations and raise awareness about hepatitis C, pushing for prevention as well as treatment.
“I’m always willing to talk about my story with people in detoxes, rehabs or jails […] just to share some hope,” she explains.
“So much change is possible if you’re willing to go through the uncomfortable stuff. Help is available [and] medication is great, but if we can educate people beforehand, it’s even better.”
Hepatitis C affects about 118,000 Aussies but rates of diagnosis and treatment are dropping, even though Australia’s a global leader in Hepatitis C research.
The Federal Government has promised $23.7 million of funding for Hepatitis B & C initiatives, but more work needs to be done so people like Kelly don’t suffer alone.
“We have a cure and yet the stigma associated with how it is acquired is hindering efforts towards elimination,” Dr Alex Thompson, Director of Gastroenterology at St. Vincent’s Hospital Melbourne, said in a statement.
“HCV is not a moral failing; it is a virus and should be treated as we would any other chronic disease.”
Experts want to eliminate hepatitis C in Australia by 2030 and are calling for testing and treatment to be made more accessible for marginalised and at-risk groups, like people who inject drugs.
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They’re also calling for a new National Hepatitis C strategy with a focus on elimination, which Kelly would welcome.
Now an avid marathon runner and advocate, she’s doing her part to push for elimination by having the difficult conversations she avoided for years and breaking down the stigma one chat at a time.
For more information, visit the Hepatitis Australia website here.
If you or anyone you know is struggling with addiction contact the Alcohol Drug Information Service on 1800 250 015 or Narcotics Anonymous Australia on 1300 652 820.
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