Nearly 4,500 Canberrans have hepatitis, a blood-borne disease that, untreated, can lead to cirrhosis of the liver or to liver cancer, the fastest-growing cause of cancer death in the country. Some 3,300 people in the ACT have hepatitis B, and 1,000 people have hepatitis C.
But an estimated 31 per cent of people living with hepatitis are undiagnosed. Hepatitis ACT, which turns 30 this year, urges the public to get tested.
“Awareness about hep B and hep C is minimal, and in some cases actually just false information,” CEO Sarah Ahmed said. “We talk to people and get them tested and cured.”
Hepatitis ACT’s finger-stick test (a blood sample) gives results within the hour.
“You no longer have to go to your GP, get a pathology referral, go get your blood test done, come back to your GP, pay another gap fee, and then find out whether you have hep C or not,” Ms Ahmed said. “Just walk into Hepatitis ACT and we can do the test for you.”
The organisation started in 1996 as the ACT Hepatitis C Council. At the time, there were no services for hep C in Canberra.
“Three people just decided they were going to do something about it,” Ms Ahmed said. “They had no funding. They started providing resources in the shape of flyers. They created this little support group. They set up a phone line. That was all self-funded. And then the organisation organically grew.”
Over the years, Hepatitis ACT has expanded to include hep B and broader liver diseases caused by hepatitis. It is now a commissioned health service, and has secured ACT Government funding until 2031.
Hepatitis still prevalent, but easy to cure
Australia aims to eliminate viral hepatitis by 2030 — but we are not on track to meet those targets, Ms Ahmed warns.
“Not enough people know that hepatitis B and hepatitis C are still very prevalent diseases in the community,” Ms Ahmed said. “People are not getting tested, so they don’t know that they have the disease. There is stigma around hepatitis B and hepatitis C. Services are under-resourced. People struggle to believe that there is a cure or a treatment.
“The problem is that your liver is such a resilient organ that a lot of times there are really not that many symptoms. You might have some gut issues, jaundice, you might just feel tired. It’s very easy to ignore those symptoms and just assume they’re part of everyday life. The symptoms sometimes do not really show up until your liver’s been truly quite damaged, and you’re close to cirrhosis or permanent liver damage.”
The best way to know your status is to get tested, Ms Ahmed said.
“It could be as simple as having a conversation with your GP or your nurse-practitioner. Or, if you’re having a routine blood test, and you don’t know your status, ask your GP or nurse to add that to your pathology form — because knowledge is power.
“Once you know you have hepatitis B or hepatitis C, you know that there is something you can do about it. If you don’t know that you have it, then that virus is going to continue to damage your liver.
“If you’re not sure of your hep C or hep B status, speak to your GP, your nurse practitioner, or give Hepatitis ACT a call.”
Hepatitis B has a “very safe and effective” vaccine, Ms Ahmed said; there is no cure yet, but treatment keeps the viral load down and minimises liver damage. Hepatitis C can be cured within two to three months. The previous treatment, interferon-alpha, was “pretty horrific” — side-effects included flu-like symptoms, fatigue, depression, and anaemia — but since 2016 direct-acting antivirals treat the disease with minimal side-effects (some people feel nauseous).
Although many believe that hepatitis is primarily spread through people injecting drugs, that is a misconception, Ms Ahmed said. Hepatitis can also be spread through getting tattooed in unregulated spaces, getting piercings or medical procedures in unsterile conditions, or, before 1990, blood transfusions.
“If you think you’ve ever even accidentally put yourself at risk of any bloodborne virus, find out your status,” Ms Ahmed said. “It’s not necessarily people who are still in their wild phase of partying or tattooing. A lot of the times it’s people who did that 20 or 30 years ago, who’ve moved on, who are just your average regular person now, living simple nine-to-five boring lives. Those are the people who really should look at getting tested and finding out their status.”
The biggest risk for hepatitis B is mother-to-child transmissions: if the mother has hep B and the child does not get a birth-dose vaccination, the infant will also have the virus. To that end, Australia has set a target of 95 per cent timely birth dose vaccination by 2030.
“Get your hep B vaccines; make sure your children are vaccinated,” Ms Ahmed said. “It’s safe; it’s been around for decades; it could prevent a disease that, as yet, has no cure.”
Future plans
To mark its 30th anniversary, Hepatitis ACT held a forum last week to create a roadmap to eliminate hepatitis, linking settlement services, migrant and refugee services, alcohol and other drug, housing and homelessness, and mental health organisations.
In the meantime, Hepatitis ACT will advocate for harm reduction and easier access to treatment pathways so hepatitis can be eliminated by 2030.
“We need the political will from our leaders to ramp it up over the next four years and invest in this so that we come close to achieving the elimination targets,” Ms Ahmed said. “That includes intensive resourcing for testing and treatment and education and awareness campaigns, which costs money and people resources and time.”
73 per cent of undiagnosed hepatitis cases are among people born overseas — hep B cases mostly in the Vietnamese and Chinese communities, followed by Filipinos and New Zealanders, Ms Ahmed said.
Hepatitis ACT has trialled a short-term outreach pilot program, LiverWise, where cultural peers talk to ethnic communities, providing bilingual education, testing, and vaccination.
In the last six months, the program has found 18 previously undiagnosed people with hepatitis B; they are now under the care of a doctor or nurse. Funding ends on 30 June; if it is funded again, Hepatitis ACT will expand it to Filipinos and NZers.
Hepatitis ACT is also advocating for the government to set up a needle and syringe program in the Alexander Maconochie Centre, as a report last year recommended. The rate of hepatitis among prison inmates is 3.5 times higher than among the general population, due to sharing injecting equipment.
The organisation will also launch a campaign focused on construction workers, many of whom, Ms Ahmed says, do not engage much with health services or have a local GP.
“If you don’t want to go to your usual GP, because there is still quite a fair bit of stigma around hep C and hep B, give us a call,” Ms Ahmed said. “We’ll link you. We have amazing clinicians on board who can put you on treatment.”
Hepatitis ACT
36 David Street, Turner, opposite the O’Connor shops; drop-ins welcome, Monday to Friday, 9am to 5pm. Free call 1800 437 222. www.hepatitisact.org.au
