Writer and broadcaster

PERSONAL STORIES OF HEPATITIS C, TREATMENT AND CURE

Welcome to Vital voices: Personal stories of treatment for hepatitis C. This website has two aims. First, it aims to support people living with hepatitis C in thinking about and/or having treatment. Second, it aims to inform the public about hepatitis C and what can be done about it.

Why this website now? Public discussion of blood-borne viruses rarely looks further than the statistics, but it’s important to remember health issues such as hepatitis C are experienced by many people in Australia and around the world, and that those people have complex lives, stories and experiences. After the advent of the highly effective direct-acting antiviral hepatitis C treatments (DAAs), the World Health Organization developed a strategy to eliminate the virus as a public health problem by 2030. Australia is one of several countries that committed to the goal of eliminating hepatitis C by 2030, and this has led to a range of measures including listing the medications on the Pharmaceutical Benefits Scheme and initiatives promoting treatment.

This website allows you to explore vitally important personal stories of hepatitis C and treatment at a time when elimination of the disease across communities seems possible. Vital voices also aims to showcase the lives of people affected by hepatitis C, emphasising their significance, complexity and vitality.

Vital voices aims to inform public discussions of hepatitis C, to counter stigmatising misconceptions, and to promote understanding of living with the virus and its treatment.

What is hepatitis C?

Hepatitis C (often called ‘hep C’) is a disease caused by a virus that affects the liver. Most people living with hepatitis C have what’s often referred to as ‘chronic hepatitis C’. This can cause liver damage over time and can seriously affect the body if left untreated. A minority of people acquire and clear the virus without treatment. There are six different genotypes (‘strains’) of hepatitis C. These are labelled one to six, with subtypes organised using letters (such as 1a or 1b). Treatment is available for all genotypes and subtypes of hepatitis C.

How is hepatitis C acquired?

Hepatitis C is a blood-borne virus. This means it is acquired through blood-to-blood contact. A common way to acquire hepatitis C is by sharing injecting equipment such as needles, syringes, or other items used for injecting, with someone who has hepatitis C. Hepatitis C can also be acquired by sharing personal items such as toothbrushes and razors, or through other forms of skin penetration – such as tattooing, body piercing or acupuncture – if unsterilised equipment has been used. It can also be acquired through healthcare procedures where sterilised medical equipment hasn’t been used, or where hepatitis C is in the medical blood supply. In Australia, blood is screened for hepatitis C, and medical facilities are expected to use sterile medical equipment. Find out more about the experiences of people who acquired hepatitis C sexually or through medical procedures.

Hepatitis C is not acquired through:

Hugging or kissing
Sharing food or utensils
Eating food made by someone who has hepatitis C
Sharing bathrooms or toilets
Coughing or sneezing
Casual social contact

Symptoms of hepatitis C

Some people who have hepatitis C do not experience symptoms. Many people live with hepatitis C for years and do not notice any symptoms or feel unwell. Importantly, symptoms may only occur once the disease has progressed enough to cause severe liver damage.

When hepatitis C is first acquired, the following symptoms may be noticeable:

‘Flu-like’ illness
Yellow skin and eyes (‘jaundice’)
Dark urine and pale stools

Over time, symptoms may include:

Fatigue/tiredness
Vomiting
Muscle aches
Joint aches
Abdominal aches
Appetite loss/nausea

While some of these symptoms may lessen or even disappear over time without treatment, this does not necessarily mean that the virus has left the body. If hepatitis C is not treated, it can eventually cause significant damage to the liver. This is called ‘cirrhosis’. Cirrhosis is scarring of the liver that can make it difficult for the liver to work properly and can lead to liver failure and cancer. Curing hepatitis C can prevent cirrhosis before it develops, or stop further liver damage if cirrhosis has begun to develop.

For a full, up-to-date description of hepatitis C symptoms and effects, visit the Hepatitis Australia website.

Hepatitis C treatment

Hepatitis C is now treated with ‘direct-acting antivirals’ (DAAs), which are taken in tablet form. The cure rate is around 95%. Cure is usually possible even if cirrhosis is present.

DAAs replaced the older, interferon-based treatments that had to be injected and had treatment periods of between six to 12 months. The old treatment had significant side effects and success rates were low. The new treatment has few side effects, usually results in cure within eight to 12 weeks, and is much simpler to manage.

In Australia there are no restrictions on who can have hepatitis C treatment. Treatment is subsidised on the Pharmaceutical Benefits Scheme (PBS) and is available to anyone with a Medicare card (for information about other countries, see our Resources and information page). In the past some restrictions applied to who could access treatment, but this has now changed. For example, current illicit drug injecting is no longer an obstacle to treatment in Australia.

To find out more about how to access hepatitis C treatment, see our Resources and information page.

This website

Vital voices is based on a carefully conducted research project that collected detailed stories of people affected by hepatitis C, including those who had had treatment and those who hadn’t. These stories were analysed by a team of highly experienced researchers, and key themes in them were identified. These themes are presented here using video re-enactments, original audio recordings and written extracts from the interviews. The aim is to present experiences of hepatitis C and treatment in people’s own words.

Because blood-borne viruses are stigmatised, and people affected by them often experience discrimination, the website’s interview material has been altered to protect the identities of participants. Written extracts and audio clips have been edited to remove potentially identifying information, and the video clips have been produced using actors who have re-enacted the original interview material. The video and audio clips and written extracts were selected on the basis that they illustrate key themes identified by the team. For example, they may relate to how people felt when they were diagnosed with hepatitis C, experienced stigma and discrimination, or were cured of hepatitis C, or to the issues that make treatment easier to access and complete.

Who did we interview? The website content is based on 50 interviews with people personally affected by hepatitis C. These interviews were conducted with people who have experience of hepatitis C, many of whom have tried the new or old treatments or both, and some of whom have acquired hepatitis C again after being cured of it. We also spoke to people who were unsure whether they had it or not. All participants lived in Australia.

Our participants range in age from 30 to 71 years old, and they describe a variety of experiences with hepatitis C and perspectives on treatment. Most of the people who appear on this website have had treatment. Some had heard of it but had not had it themselves, and some had previously been cured but had reacquired the virus and were having treatment again.

Details of the people interviewed can be found here.

What can you expect to find on Vital voices? By browsing our list of topics, you will find experiences of hepatitis C testing and diagnosis, reflections on treatment and cure, views on hepatitis C-related stigma and discrimination, observations about the importance of family and friends, and many insights into other key issues. In our collection of personal stories, you’ll find detailed accounts of experiences of hepatitis C, many of which involve treatment and cure. While we aimed to gather a broad range of experiences for this website, it’s important to note that everyone is different, and perspectives can also change over time, so it isn’t possible to capture all experiences. We hope you find Vital voices helpful and informative.

A note on terms

Given the many different experiences of hepatitis C and hepatitis C treatment, it is perhaps unsurprising that people don’t always use the same terms when telling their stories. The words ‘cure’ and ‘clearance’ are two terms that are especially important for our focus on hepatitis C treatment. On this website, the word ‘cure’ is used to describe experiences of being cured of hepatitis C through treatment. For example, Tristan describes feeling ‘rapt’ when he found out that the new direct-acting antiviral treatment had successfully cured him of hepatitis C. On this website, the word ‘clearance’ is used in a different way. Here, clearance is used to describe occasions when the body gets rid of, or ‘clears’, hepatitis C without needing treatment. Gretchen, for example, describes her experiences of clearing hepatitis C. These two words are generally used on this website in this way to follow current medical convention, and to ensure the content is as clear as possible while remaining meaningful to our participants and to you, our site visitors. For more information on other key terms used on this website see our Key terms page.

Personal stories of hepatitis C, treatment and cure can be found on other websites too. Hepatitis Australia, for example, offers a collection of personal stories of cure, and related experiences are available on the LiverWell and Hepatitis Queensland websites. Vital voices contributes to these resources by offering the first large-scale, systematically gathered collection of detailed personal stories and theme-based topics drawn from a carefully conducted research project. While the experiences collected for this website often emphasise the importance of hepatitis C treatment and the positive impact of cure on health and vitality, we don’t shy away from some of the challenges people affected by the virus face, too. Here you’ll find a variety of perspectives on hepatitis C, treatment and cure, presented within the daily lives and events that shape experiences of this virus, treatment and life afterwards.

ACKNOWLEDGMENT OF COUNTRY

The Vital Voices team acknowledges the traditional owners of the lands throughout Australia on which the research behind this website was conducted. We acknowledge their continuing connection to lands, waters and culture, and value their unique contribution to the wider Australian society.