30 Jul 2024
2024 World Hepatitis Day Seminar: bridging research, clinical services and lived experience
This year, on World Hepatitis Day, the theme ‘It’s time for action’ urged the global community to improve prevention, diagnosis and treatment of hepatitis urgently while addressing the stigma faced by those living with the disease. The recent inter-institute seminar, hosted at the Doherty Institute in collaboration with Burnet Institute, Hepatitis B Voices Australia and LiverWELL, highlighted the importance of integrating real-world experiences with research to drive progress.
Key highlights from the seminar:
National strategy and roundtable report back
At the recent Victorian Round Tables and parliamentary event in Canberra, there was a consensus on the need for better access and linkage to care to eliminate viral hepatitis. With the Australian government’s increased $23.7m investment in hepatitis B and C initiatives, Elaine Montegriffo, CEO at LiverWELL, identified key focus areas: lived-experience care and leadership, stepping up the response in the justice system, nurse-led models of care and capacity building. This funding will also support HepLink Australia (formerly the National Hepatitis Info Line) in tailoring their approach to local community needs. “In Victoria, this has meant that we've been able to invest in peer-led work and actually get more out into communities to take support and advice and help where it's needed,” said Ms Montegriffo.
Hepatitis B
Speakers presented examples of their work on hepatitis B.
Launch of a Victorian Hepatitis B Toolkit
The Royal Melbourne Hospital’s Dr Nicole Allard, Medical Epidemiologist at the WHO Collaborating Centre for Viral Hepatitis at the Doherty Institute, and Isabelle Purcell, Senior Project Officer at ASHM, introduced the Victorian Hepatitis B Toolkit, an interactive online resource for healthcare providers in Victoria. It gives clinicians the essential tool they need to care and manage patients living with hepatitis B, as well as reduce stigma. “The idea is to try and encourage clinicians to look at the range of experience of people living with Hepatitis B,” said Dr Allard.
Data linkage helps track progress towards targets in Victoria
The Royal Melbourne Hospital’s Jennifer MacLachlan, Senior Epidemiologist at the WHO Collaborating Centre for Viral Hepatitis at the Doherty Institute, discussed the benefits of data linkage, which combines separate datasets to provide a comprehensive view of a person's healthcare journey. This process captures care gaps, such as those highlighted in a recent project on preventing mother-to-child transmission of hepatitis B in Victoria. “One of the real benefits of data linkage is that there's a lot of measures of diversity that are captured across a lot of these data sets,” said Ms MacLachlan. While data linkage creates more robust data, it can also cause delays. Future improvements in data linkage could enhance data coverage and outcomes for people affected by hepatitis B.
Hepatitis B virus and hepatocellular carcinoma surveillance telehealth clinic
Brad Whitton, Nurse Practitioner Candidate at St Vincent’s Hospital Melbourne, presented the decentralised, nurse-led clinic for hepatitis B and hepatocellular carcinoma established at St Vincent’s Hospital in 2020. Aiming to increase the number of people engaged in care, this approach helps identify suitable patients for specialised clinics, such as telehealth, ensuring comprehensive care through regular consultations and patient evaluations. “It enabled more new patients and assessments from complex people to be able to book into those clinics where we really needed to cut down our waiting times,” said Mr Whitton.
Hepatitis C
Speakers presented examples of their work on hepatitis C.
‘Every Yarn Counts, Live Free From Hep C’: a co-designed health campaign for the Aboriginal Community Controlled Health Sector
Digby Mercer, Research Assistant, and Daisy Gibbs, Evaluation Officer, both from EC Australia at the Burnet Institute presented ‘Every Yarn Counts’, a campaign to engage Aboriginal and Torres Strait Islander communities in hepatitis C care through local Aboriginal Community Controlled Health Organisations. “This campaign aims to address and reduce stigma and shame associated with hepatitis C, by increasing open conversations about hepatitis,” said Mr Mercer. The team’s goal is to use these approaches to boost testing and treatment capacity in a culturally safe manner. The team is now evaluating the campaign through client surveys, social media analysis, staff training surveys and clinical service data to determine the success of its strategy and materials.
‘C No More’ project: mobile hepatitis C care and peer support in community corrections
Bridget Reid, Clinical Nurse Consultant at St Vincent’s Hospital Melbourne presented the ‘C No More’ project with Mark Belzer and Amanda Callus, both peer workers at Harm Reduction Victoria. Set up in collaboration with St Vincent’s Hospital Melbourne, Burnet Institute and Harm Reduction Victoria, the nurse-led and peer-supported program offers discreet mobile care to people on Community Correction Orders with hepatitis C. It provides clinical assessments, hepatitis C testing and treatment. By sharing their personal experiences, peer-support workers, like Mark Belzer and Amanda Callus, play a crucial role in building trust and encouraging engagement in hepatitis health services. “I've been using drugs on and off for over 30 years now. I also have quite a lot of experience in the justice system. All my experiences have helped me, my role as a peer,” said Mr Belzer. “I explain to punters how easy treatment is with little or no side effects compared to the old, Interferon treatment.”
Victorian Local Public Health Units - Community linkage to care for hepatitis b and c =
Hepatitis Care Pathways in Goulburn Valley
Located in the Goulburn Valley, Shepparton has the highest prevalence of hepatitis C in rural Victoria, a sign of the significant health challenge in the region. In response, the Golden Valley Public Health Unit and the Golden Valley Sexual Health Clinic created the ‘Hepatitis Care Pathways’ project to reduce the burden of the disease in the Goulburn Valley. The objectives are to enhance case detection and care by addressing barriers and improving local capacity for community-based treatment of hepatitis B and C. Progress achieved by the project in this region inspires others in their efforts to combat viral hepatitis.
“People with chronic hepatitis have complex lives. We need to minimise barriers and the number of touch points between screening and treatment." said Dr Vinay Menon, Clinical Lead at the Goulburn Valley Public Health Unit.
Cultural Liaison Officers enhance the care of patients born overseas
Dr Anna Pierce, Infectious Disease Specialist at Monash Health, discussed the role of Cultural Liaison Officers in improving hepatitis care for migrants. Implemented by the Southeast Public Health Unit in 2022, the Cultural Liaison Officer project bridges cultural gaps, providing tailored support and enhancing follow-up care for people living with hepatitis in diverse communities. The success of the projects highlighted the potential for expanding the role of Cultural Liaison Officers to include other notifiable diseases and upskilling public health officers to improve overall community healthcare.
Panel discussion with community members with lived experience of hepatitis
Moderated by the Royal Melbourne Hospital’s Professor Ben Cowie, Director of the WHO Collaborating Centre for Viral Hepatitis at the Doherty Institute, the panel discussion featured community members with lived experiences of hepatitis who generously shared their experience with the audience: Jane Little from the Doherty Community Advisory Board, Nicolette Burrows from LiverWELL and Mark Belzer from Harm Reduction Victoria. The discussion highlighted the value of personal stories in connecting with the community and the importance of overcoming stigma and addressing fears.
"Raising awareness is the single most important thing,” said Ms Little who emphasised the need for awareness campaigns to target both high-risk groups and the general population.
“People won't put their arm forward for testing because they don't want to find out," said Mr Belzer, highlighting fear of test results as a major barrier to early diagnosis and treatment.
"When we think about who is impacted by hepatitis C, it seems as though you can't talk about stigma and discrimination without talking about the community that is living with the impacts," said Ms Burrows who spoke about the pervasive issue of stigma and discrimination, stressing that the need to address stigma is crucial for encouraging individuals to seek testing and treatment without fear of judgment.
Reflecting on the 2024 World Hepatitis Day theme ‘It's time for action’ as she closed the event, Professor Margaret Hellard, Deputy Director at Burnet Institute, asked, “What action should those actions be?” The seminar underscored the need for community-centred approaches and culturally appropriate care to combat hepatitis and meet 2030 global elimination goals. As highlighted throughout the event, integrating research with lived experiences and addressing stigma are crucial steps in advancing public health and improving outcomes for those affected by hepatitis.