PERSONAL STORIES

Here you’ll find participants’ accounts of hepatitis C diagnosis, living with hepatitis C, treatment and cure. The people and stories were carefully selected to highlight diversity in backgrounds and experiences. While this website is not able to tell every possible story of hepatitis C and treatment in Australia, it can show just how different people and their experiences are. In the stories can be found details of the many important concerns and circumstances our participants negotiated in living with and having treatment for hepatitis C.

The stories presented here rely on participant reports of overdose. Some experiences may not conform to medical definitions of overdose, and some responses described may not reflect medical advice.

While these narratives were written from the interview transcripts and rely on participants’ own words, some aspects have been paraphrased to improve coherence and readability. In making these changes we have worked hard to remain faithful to the original meaning and intentions. Some experiences may also be presented in other sections of the website, using more detailed quotations.

Alexander

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Alexander was diagnosed with hepatitis C in 1996 when he was in prison and says that while he wanted to be cured of it, over the years he was ‘never that concerned’.

Amelia

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Amelia was diagnosed with hepatitis C while she was pregnant with her son, and postponed treatment until after she had given birth.

Anthony

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Anthony learnt about hepatitis C in 2006, just before he started injecting drugs, because his girlfriend had acquired it.

Brooke

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Brooke was diagnosed with hepatitis C in the late 1990s. On receiving her diagnosis, she worried that she might die and that her children would have to grow up without her.

Cal

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Cal was diagnosed with non-A, non-B hepatitis in the early 1990s, when he was 17. He remembers calling his mother straight away, and she started researching hepatitis and treatment options for him.

Carol

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Carol runs a small business in a regional town in New South Wales. She was first diagnosed with hepatitis C in the early 2000s, but it cleared spontaneously, without treatment.

Cassandra

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Cassandra was diagnosed with hepatitis C in 1994. Concerns about the possible impact of the old, interferon-based medications on her work led her to postpone treatment for many years

Chris

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Chris was diagnosed with hepatitis C in the early 1990s. He was very conscious of the stigma surrounding the virus and chose not to tell many people about his diagnosis.

Colin

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Colin is a mental health support worker. He was diagnosed with hepatitis C in 1996, when he was in prison.

Dana

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Dana first learnt about hepatitis C in the early 2000s when she had a sexual health check after meeting a new partner.

Danny

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During a period when Danny was partying and consuming drugs regularly, he started to feel unwell and received a hepatitis C diagnosis.

Dave

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Dave found out he had hepatitis C after receiving a blood donation in the mid-1990s.

Derek

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First diagnosed with HIV and hepatitis C in 1991, Derek was later diagnosed with hepatitis C again two further times (in 1998 and 2012).

Dominic

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Dominic found out he had hepatitis C through a check-up at a community drop-in centre around 2002, when he was 18.

Evan

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Evan was diagnosed with hepatitis C around the late 1990s.

Giovanna

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Giovanna was diagnosed with hepatitis C in the mid-1990s. Experiences in a hepatitis C support group put her off interferon-based treatment

Gracie

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In the early 1990s Gracie found out she had hepatitis C after her new partner asked her to get tested for it.

Gretchen

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After her late husband was diagnosed with hepatitis C-related in the early 1990s, Gretchen was diagnosed with the virus too.

Harriet

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Harriet was diagnosed with hepatitis C in about 2012. She recalls feeling very worried at the time and began interferon-based treatment about two weeks after the diagnosis.

Heather

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Heather was diagnosed with hepatitis C after her daughter was diagnosed with it through ‘a routine pregnancy screen’.

James

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James was first diagnosed with hepatitis C when he lived in the United Kingdom around 2000 but didn’t have treatment until he emigrated to Australia in 2015.

Julia

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Julia found out she had hepatitis C while pregnant with her first child.

Kylie

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Kylie was diagnosed with hepatitis C in the late 1990s. She was advised not to have treatment at the time, and she lived with the disease until she had the new treatment in 2017.

Laura

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Laura decided to get tested for hepatitis C in the middle of 2020, because she had shared injecting equipment with a previous partner who had the virus

Lee

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A blood test in 1999 indicated that Lee had hepatitis C antibodies, but later tests suggested that he didn’t have an active disease and had cleared the virus spontaneously

Lou

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Lou works and studies part-time

Marty

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Marty was diagnosed with non-A, non-B hepatitis in the late 1980s after he donated blood and returned positive test results for what he was told was a ‘rare antigen’

Mem

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Mem was diagnosed with hepatitis C shortly after giving birth in 2006

Miguel

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Miguel acquired hepatitis C during a period in which, as he puts it, he was a ‘party animal’

Mikey

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Mikey learned about hepatitis C when his friend was diagnosed with it around 2017

Paulie

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Paulie was diagnosed with hepatitis C in 2002

Peta

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Peta hasn’t been diagnosed with hepatitis C and doesn’t think about it a lot

Rashida

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In 1994, when she was still living in Egypt, Rashida was diagnosed with hepatitis C

Rebecca

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Rebecca acquired hepatitis C from a needlestick injury in 2010

Regina

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Regina was diagnosed with hepatitis C in 2009 after a blood test for a hysterectomy showed she had the virus

Ricky

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Ricky was diagnosed with hepatitis C a month before his interview in 2020

Robbie

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After experiencing serious health problems in the early 1990s, Robbie decided to get tested for hepatitis C and found out that he was positive

Rod

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Rod was first diagnosed with hepatitis C in the early 2000s

Rohan

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Rohan works in an LGBTIQ health organisation

Rose

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Rose was diagnosed with hepatitis C around 1999

Rusty

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Rusty was diagnosed with non-A, non-B hepatitis many years ago

Sam

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When Sam was diagnosed with hepatitis C in 2018, he didn’t know much about the virus

Sana

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Sana was first diagnosed with a ‘blood infection’ in India in about 2008, before being diagnosed with hepatitis C in Australia in 2019

Scott

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In his late thirties Scott decided to have a hepatitis C test after feeling that his ‘liver wasn’t quite right’

Sean

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While Sean wasn’t diagnosed with hepatitis C until 2001, he says he thinks he acquired it as a teenager in the late 1990s

Steve

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Steve was diagnosed with hepatitis C in about 2005

Stuart

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Stuart can’t remember exactly when he was diagnosed with hepatitis C, but thinks he acquired it through a childhood medical procedure

Terence

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Terence was diagnosed with hepatitis C in 2016 after leaving prison

Trish

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Trish was diagnosed with hepatitis C in about 1999

Tristan

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Tristan has had hepatitis C twice