‘Hepatitis B Voices Australia’ launches in Victoria
Researchers and co-founders of the Doherty Institute today launched Australia’s first hepatitis B community organization run entirely by people with lived experience of hepatitis B – Voice of Hepatitis B Australia (Voice Hep B).
The non-profit organization 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 that can damage the liver. Most people living with HCB acquired the infection at birth or early in life. Around 200,000 Australians live with chronic hepatitis B, which can cause liver cancer if left untreated. Liver cancer is the fastest growing cause of cancer death in Australia.
However, for those diagnosed and referred to care, proper monitoring and treatment can protect their health and prevent outcomes such as liver cancer.
Nafisa Yussfco-founder and director of Hep B Voices, was diagnosed with CHB in Melbourne, just six years after arriving in Australia as a refugee.
“When I was diagnosed with HCB, I struggled to navigate medical jargon while trying to learn English and personally understand what it was like to live with a chronic disease,” he said. -she explains.
“Medical terminology is ‘very biomedical’ and centered around a ‘Western explanation of health care’.”
Today, Nafisa is a social science researcher and project manager at WHO Collaborating Center for Viral Hepatitis at the Doherty Institute, which is leading Victoria’s response to eliminating hepatitis B.
“Lived experience is key to responding appropriately to hepatitis B. The voices of people living with hepatitis B should be integral to all aspects of the hepatitis B response. This means that people should be part of the design, development, implementation and decision making of how we respond to hepatitis B,” said Yussf.
With a focus on advocacy and policy development, research and training, counseling services and community engagement, Hep B Voices will work to empower people living with hepatitis B to be part of the national discourse on all aspects of hepatitis B care.
Co-founder, director and vice-president Lien Tran said Hep B Voices was created to amplify the voices of people 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 are heard and amplified,” Ms Tran said. “After two years of working behind the scenes, we are now here with Hepatitis B Voices Australia to bring the voices of people living with hepatitis B to the heart of the response and elimination of the virus.”
Melbourne Royal Hospital Professor Benjamin Cowiedirector of the WHO Collaborating Center for Viral Hepatitis at the Doherty Institute, said Hep B Voices will be a necessary and key player in the management of hepatitis B in the years to come.
“I have no doubt 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,” said Professor Cowie. said.
“I am truly excited about a future where the voices of people living with hepatitis B are at the center of all our work, guiding our efforts and driving us towards the elimination of hepatitis B in Australia and around the world.”
Hepatitis B Voices Australia is proudly supported by the Peter Doherty Institute for Infection and Immunity.