News

Doherty Institute researchers and co-founders have launched today the first hepatitis B community organisation wholly led by people with lived experience of hepatitis B in Australia - Hepatitis B Voices Australia (Hep B Voices).

The non-profit, aims to support, represent and advocate for the health and well-being of people affected by chronic hepatitis B (CHB) in Australia.

Hepatitis B is a virus which can cause liver damage. Most people living with CHB acquired infection at birth or early in life. Around 200,000 Australians are living with chronic hepatitis B – which can cause liver cancer if untreated. Liver cancer is the fastest increasing cause of cancer death in Australia.

However, for people who are diagnosed and linked to care, appropriate monitoring and treatment can protect their health and prevent outcomes including liver cancer. 

Nafisa Yussf, a co-founder and Director of Hep B Voices, was diagnosed with CHB in Melbourne, just six years after arriving to Australia as a refugee.

“When I was diagnosed with CHB, I found it difficult navigating the medical jargon while trying to learn English and personally process what living with a chronic condition meant,” she explained.

“The medical terminology is “very biomedical” and centred on a “Western-based explanation of healthcare”.”

Today, Nafisa is a Social Researcher and Project Manager at the WHO Collaborating Centre for Viral Hepatitis at the Doherty Institute, which is leading Victoria’s response to eliminating hepatitis B.

“Lived experience is critical to adequately respond to hepatitis B. The voices of people living with hepatitis B should be integral to all aspects of the hepatitis B response. This means people should be part of the design, development, implementation and decision-making of how we respond to hepatitis B,” Ms Yussf said.

With a focus on advocacy and policy development, research and training, consultancy services and community engagement, Hep B Voices will work to empower those living with hepatitis B to be part of the national discourse on all aspects of hepatitis B care.

Co-founder, Director and Vice-chair Lien Tran said that the Hep B Voices was created to amplify the voices of those living with hepatitis B.

“We came together and knew we had to do something to create a safe environment where the voices of the affected community is heard and amplifed,” Ms Tran said. “After two years of work in the background, we are now here with Hepatitis B Voices Australia to make the voices of people living with hepatitis B central to response and elimination of the virus.”

Royal Melbourne Hospital’s Professor Benjamin Cowie, Director of the WHO Collaborating Centre for Viral Hepatitis at the Doherty Institute, said that Hep B Voices will be a necessary and key player in how hepatitis B is managed in years to come.

“I have no doubt that Hep B Voices will help lead our national response, and, as a result, our policies and programs will be so much stronger and more responsive to the health and wellbeing needs of Australians living with hepatitis B,” Professor Cowie said.

“I am truly excited about a future where the voices of people living with hepatitis B are at the centre of all our work, guiding our efforts, and leading us towards the elimination of hepatitis B in Australia and globally.”

Hepatitis B Voices Australia is proudly supported by the Peter Doherty Institute for Infection and Immunity.