World Hepatitis Day: “There can be a huge amount of anxiety and confusion in the community about viral hepatitis”
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With World Hepatitis Day approaching on Friday 28 July, Canberra is preparing to illuminate its iconic landmarks in vibrant green, serving as a symbol of Australia’s commitment to eliminating hepatitis by 2030.
The tree-lined streets of Turner are particularly buzzing, as Hepatitis ACT, a not-for-profit organisation with an impressive 27-year history, continues to provide essential education, support, and treatment options for Canberrans affected by viral hepatitis.
One recent client Jenny*, who was exceptionally distressed when first making contact, explains that “I had been told by my doctor that I had hepatitis B. No support or information on what this meant.”
However, “The girls at Hepatitis ACT were so calm and kind” and Jenny felt all her questions were answered with “genuine care and warmth.”
Jenny stresses that Hepatitis ACT “Helped me advocate for myself…and ask for a second opinion,” revealing that her test results were her immunity response from participation in Australia’s Hepatitis B immunisation program, active since 2000.
Hepatitis ACT clearly plays a reassuring role in the community, and Jenny firmly states, “Without their guidance, I would have mistakenly believed I had an active hepatitis B infection and would have had to navigate the shocking news by myself.”
Sarah Ahmed, Hepatitis ACT’s Executive Director, acknowledges there is a gap in public education as “there can be a huge amount of anxiety and confusion in the community about viral hepatitis.”
Unfortunately, these misconceptions are not unusual in the complex field of viral hepatitis, as another Canberran found, even after completing treatment.
Emma* underwent treatment for hepatitis C, and was cured, however during her pregnancy she explains that “my doctor told me I had hep C again, I was devastated…I did treatment years ago”.
Seeking guidance from her treatment provider brought clarity.
“First thing they said was ‘rubbish, you were cured,’ and then looked at the test results…it was just a positive antibody test because I ‘had’ the virus once!” Emma shared.
Emma’s experience could have been avoided if she had known that the only way to determine a current hepatitis C infection is through a PCR test. At Hepatitis ACT, this simple test can be conducted with just a finger prick of blood, and the results are provided within an hour.
Although Emma knew she hadn’t engaged in any high-risk blood-to-blood practices she still went ahead and had a PCR test “for peace of mind” she explains, and “if it was positive, I knew that the chances of giving it to my baby were really small and I could easily get treatment after giving birth.”
Sarah explains that the uptake of testing is imperative, as “the longer people have viral hepatitis and don’t get treatment, the more their liver is getting damaged and the greater the risk of liver cancer.”
Fortunately, for the Canberra community, Sarah says, “The team at Hepatitis ACT are committed to providing accurate, safe, non-judgmental, and stigma-free information, advice, and support to people and communities affected by hepatitis.”
So, as World Hepatitis Day approaches, let these stories serve as a reminder of the importance of education, accurate information, and support.
As Canberrans, let’s illuminate the path towards a future free from the burdens of hepatitis and ensure that no one faces this journey alone.
*Names changed for privacy
