Interview: Lien Tran, Hepatitis B Voices Australia
This interview has been edited for brevity.
Hepatitis B Voices Australia is ‘the first hepatitis B community-led organisation in Australia that is wholly led by people affected by hepatitis B’. Amplifying the voices of the community and working to eliminate the impacts of hepatitis B are central to its mission. Having recently partnered with Health+Law to invite community participation in our national Legal Needs Study, Hepatitis B Voices Australia Co-founder, Director and Treasurer, Lien Tran spoke with us about the establishment of the organisation, the challenges it faces and why a project like Health+Law is long overdue.
What led to the creation of Hepatitis B Voices?
I’m among the founders of Hepatitis B Voices Australia. The founding members are people who have been working in that sector, in hepatitis, either in public health or in community support or scientific research for a long time. We all had lived experience, and in the few years the involvement of the community of people with lived experience has been regarded in a better way. We came together a few years ago, as we saw a lack of representation of lived experiences in the sector.
We have been asked to be involved in so many committees, so many trainings, so many research projects, so many advocacy events to the point that we are all swimming in those requests. We thought we couldn't do it ourselves, as individuals. So, we decided that we need to come together, and to get more people to share the load and to create a structural foundation for community involvement and set up Hepatitis B Voices Australia.
What is the vision of the organisation?
The vision is that we amplify the voices of people living with hepatitis B in all aspects of the hepatitis B response. We want more people speaking up, getting inspired, and to build capacity and professional development for people to be able to participate in those forums and provide a more diverse perspective.
We cannot say that we represent everyone. There's a lot of views, opinions and experience that we want to know and hear and then we want that to be reflected in the landscape. The point is that two thirds of people living with hepatitis B in Australia are actually from a migrant and refugee background. As migrants, we have to navigate the system in our everyday lives while just simply trying to put food on the table for our families.
Hepatitis B is often very low on affected people's priority list because it doesn’t necessarily make you sick immediately. There’s also stigma and discrimination and people will not talk about that. People are busy, or they don’t know where they can go to have those conversations, or how to navigate the structures of the system to get yourself heard. We want to amplify people’s voices and make sure when they speak their voices are counted.
What have been some of the challenges?
I can talk about that the whole day, or the whole week! But luckily we have enough passion and support from a lot of people and organisations that keep us going.
But talking about challenges: I guess the first thing is, we are unfunded. We did not receive any seed funding or mission support to establish ourselves. We were fortunate that we received some donations from our supporters and the sectors.
Second is that all members are working somewhere else and we are doing this on top of our day jobs. So that is a challenge in terms of getting together. We do have a system in place for everyone to take on different parts of the work for the organisation. Sometimes it’s really challenging, sometimes it's really hard, because some people may have this period of time where they need more time dedicated to family or to work, but we try to support each other.
Without funding, we can't currently provide community support directly. When appropriate, we refer community members to a forum, run by co-founder Thomas Tu or an online support group for Vietnamese living in Australia, run by myself and co-founder Uyen Vo.
The challenge is that we have all the challenges in the world! We do not have time. We do not have money. But we have that passion, and we share the same vision, we know our work is important. We have support from the sector and we hope the government and the funders will hear our voices and it will take off.
Can you tell me about some of the work you have been involved in?
So far the work we’ve been involved in has been across scientific research, clinical care, community, health promotion and advocacy.
We have supported policy development and advocacy. We have been involved with partners, and with government, at state and federal levels, in advocating for a better hepatitis B policy and for the implementation of that policy. For example, we have contributed to community consultation group for the Australian National Hepatitis Strategy 2023 - 2030 and the external review group for the new WHO 2024 Guidelines for the prevention, diagnosis, care and treatment for people with chronic hepatitis B infection’We're also involved policy, development and advocacy in other states as well, including being a member in the Viral Hepatitis Working group at the Departmental Advisory Committee for sexual and reproductive health and viral hepatitis (DAC) of the Victorian Department of Health.
We also do research and collaborate with research institutes, and provide services in terms of consultancy and training. Some examples are projects with the Doherty Institute including the ‘Linkage to Information and Care for people notified with hepatitis B – the LINC-B Pilot Project’, the Link-to-Hepcare project, or multiple projects with ASHM, including membership in their National Hepatitis B Advisory group. We also involve in organising conferences at national and international level, one example is the upcoming Australasian Viral Hepatitis Conference 2024 in Darwin this August.
What do you hope to see change for people living with hepatitis B?
Our vision is that the voices of people living with hepatitis B are central to the responses. This is our life. It's not our job. For some [people working in the sector] they may move on from their job, but we will never leave. That's our life and because of that we have no conflict of interest other than wanting to make sure that our lives, including the clinical wellbeing and social wellbeing of people living with hepatitis B, are improved in a practical way. That’s what I want to see in the near future. I also want the hepatitis B community workforce to be funded. That gets talked about but it hasn’t happened.
How important is it for Hepatitis B Voices Australia to work with research projects like Health+Law.
We care about improving the experiences of people living with hepatitis B and research is the way that society and the government understands that experience, if the research is done properly. That’s why we love to collaborate with research institutions on research projects, to provide our voice, and to have research conducted in a way that reflects the real experiences of people living with hepatitis B. Reports and narratives need a human touch from the community to help understand the data correctly.
With Health+Law, we have been helping to find participants for the national Legal Needs Study. This work is something we have been waiting on for so, so long and I was so pleased that it is now here.
Traditionally, hepatitis B and other health conditions are viewed in a clinical way – getting diagnosed, prescribing medicines, undergoing monitoring etc. But I think the clinical impact to people’s lives can be quite minimal for a lot of people. The majority of people living with hepatitis B that I meet will have an appointment with a doctor every 6 to 12 months. They may or may not need to take medication. A lot of people control their conditions themselves. But the social impact of living with hepatitis B can be so profound, and that has not been recognised sufficiently. With Health+Law’s work in the LeNS project, this is the first time that, on top of those social impact to people's lives, the legal aspect is being looked at.
Because I run the Facebook group I know so many people have legal barriers because of hepatitis B. I think the system, the law, can be really cruel to people living with hepatitis B. We have people that have their lives ruined of because of these barriers. A law project that is going to understand the barriers – this is what we have been waiting for so long. I think the whole of Hepatitis B Voices Australia is really looking forward to the outcome of this project, and we are happy to be work together, hand in hand.
Further reading:
Hepatitis B Voices Australia