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Viral Hepatitis Conference Update
Communities, Stigma & Point of Care: The 13th Australasian Viral Hepatitis Conference
The 13th Australasian Viral Hepatitis Conference was held in Brisbane on the last three days of May this year. Key themes throughout included the enormous value of peer work, the vital importance of Aboriginalled viral hepatitis programs, the benefits of Point-of-Care [POC] testing technologies
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First Nations
In a demonstration of the importance of Indigenous communities to the future of hepatitis treatment in Australia, Troy Combo, a Program Manager at EC Australia and a proud Bundjalung man, presented on ‘The Road to Hepatitis C and ideas to further enhance their use, and, finally, the ongoing problematic preferential treatment of hepatitis C over hepatitis B. elimination in Aboriginal and Torres Strait Islander Communities’. Troy started by congratulating the newly elected Prime Minister of Australia, Anthony Albanese. He commended the Prime Minister on his promising commencement speech which included an Acknowledgement of Country and a commitment to the Uluru Statement of the Heart. Troy then discussed the 2015 launch of the World Health Organization’s Global Health Sector Strategy on Viral Hepatitis 2016-2021, which sets out three key global hepatitis C targets. However, the strategy included only one reference to indigenous communities.
Prior to the launch of this global strategy, in 2014 the inaugural World Indigenous Peoples Conference on Viral Hepatitis was held in Alice Springs. This conference allowed delegates to examine the impact of viral hepatitis on Indigenous communities, but also set goals, share innovations and experiences, and build partnerships to address viral hepatitis amongst Indigenous communities. At the second iteration of this conference (held in Anchorage in 2017— see issue 75, online at bit. ly/3OdZxHg), a powerful consensus statement was developed with three calls to action. The first sought to eliminate avoidable mortality from viral hepatitis amongst Indigenous Peoples and Tribal Communities and reach elimination by 2030; the second to require states and governments to make special provisions in health and funding policies in order to achieve viral hepatitis elimination amongst Indigenous Peoples and Tribal Communities by 2030; and the third to recognise and support the desire of Indigenous Peoples and Tribal Communities to determine their own future and receive culturally effective care.
In achieving these goals, Troy explained that countries must follow several key principals, which include an acknowledgement of the diversity amongst Indigenous peoples, the impact of generational trauma, and the importance of Indigenous leadership in achieving these goals.
Later in his presentation, Troy discussed national approaches to viral hepatitis amongst Aboriginal and Torres Strait Islander people. He explained that the overall number of Aboriginal and Torres Strait Islander people who live with hepatitis C in Australia is decreasing due to the hepatitis C cure. However, notification rates are increasing, and there is lower uptake of treatment amongst Aboriginal and Torres Strait Islander people compared to non-Indigenous populations.
Regarding future opportunities and requirements, Troy explained that Aboriginal Community Controlled Health Services (ACCHO services) have outstanding processes with diabetes and kidney disease POC testing, which could be replicated with hepatitis C POC testing. Further, he explained that Australia does not have a clear understanding of the extent of viral hepatitis C amongst Aboriginal and Torres Strait Islander populations, and more robust surveillance data is required.
Troy saw great opportunities in expanding the role of current data programs from passive data collection to active monitoring and recall systems, and called for rigorous research into Aboriginal drug user networks to increase awareness of patterns of use, injecting behaviours, initiation into use, sites of initiation, and the like.
Hepatitis B Stigma
A striking feature of the conference was the range of stories from people living with hepatitis B. One session featured a video titled ‘The many faces of Hepatitis B’, where five people who live with the virus were interviewed.
The interviews demonstrated their unique and varied experiences and feelings about hepatitis B, but also highlighted issues that should be carefully considered by the viral hepatitis workforce.
Overall, a lack of information prior to diagnosis—and the lack of awareness amongst the rest of the community— causes undue harms to people living with hepatitis B.
One participant spoke about his experience being diagnosed. He was at school in China, and all the students were tested for HBV as a preliminary step prior to receiving the vaccination. While all his fellow classmates received a vaccination, he was told that he would not be vaccinated because he was living with the virus. He did not know what it meant, but he knew it was not good. He was also informed not to tell anyone else in the class. Another interviewee disclosed he was in a new relationship and frightened to disclose his hepatitis B status to his girlfriend. He had heard her family members discuss hepatitis B in a disparaging manner in the past. When asked to rate the importance of hepatitis B in his life, this participant did not discuss physical health implications. Instead, he discussed the burden on his social and personal life.
In each person’s narrative, the importance of keeping their status private emerged. The lack of broader awareness about hepatitis B caused harm to them all.
Point of Care
Throughout the conference, many presentations discussed the wide-ranging benefits of POC testing technology (see p2 and p11), future opportunities these testing methods may present (including the possibility of providing dried-blood spot tests with Clean Needle Program (CNP) equipment or in syringe vending machines, and providing financial incentives for testing), and the necessity for increased testing in the pursuit of reaching elimination goals.
Dr Lise Lafferty from the University of New South Wales and The Kirby Institute presented on her study in which she offered POC testing, clinical assessment and a Fibroscan within a 60-minute window to prison participants. On average, those diagnosed with hepatitis C then received treatment within 6 days of the POC test. During this process, she conducted interviews with 24 participants to gain insight into their experience with the hepatitis C POC testing process.
Participants identified prison as an opportune time to receive testing for hepatitis C for various reasons. Some participants felt it was worth undertaking as they had not received a test outside of the prison system (the “might as well” factor), while others felt it gave them peace of mind or offered an easy way to protect their family from acquiring the virus upon their release.
The POC testing process also provided a more reliable and streamlined service to participants. Some had previously attempted to access testing or treatment but were ultimately hindered by the lengthy process; they were discharged or transferred prior to receiving or completing treatment. Participants also saw the POC testing process as a way to reduce some of the stigma attached to hepatitis C. Through this rapid and efficient testing process, all prisoners could be offered testing on induction to the prison. If all prisoners are offered testing, the process becomes normalised, and no one must identify themselves as a person at risk.
Finally, participants felt safer to access hepatitis C testing from the nurses in the prison system, reasoning that these nurses had experience working with at-risk communities and would therefore be less stigmatising and less scandalised. Initially, Dr Lafferty was concerned that testing people during their induction into prison might be too overwhelming. However, participants reported that undertaking the test straight away lessened their burdens. It was sometimes seen as one less thing to worry about.
Mim O’Flynn, a Registered Nurse with the hepatitis C Kombi Clinic in Queensland, reported on a POC testing blitz that occurred in Lotus Glen Prison. Whilst Lotus Glen was previously declared free of hepatitis C, over time the numbers once again crept up. Over a 5-day period, and making use of four Gilead-funded GeneXpert POC testing machines, nurses tested 423 men in the prison.
In total, 44 participants were living with hepatitis C, and they all received hepatitis C treatment within five days of their test. The prison will now have a GeneXpert machine in their reception area, and test at least 50 new entrants per fortnight.
Following her presentation, Mim implored the audience to continue to advocate for CNPs in the prison system. POC testing and the 12-week cure are vastly improving the hepatitis C health outcomes of prisoners, but without harm reduction, reinfections will continue to occur, as they did in Lotus Glen. As Mim explained, “we incarcerate young, healthy people… but they get discharged with a potentially fatal virus. As health professionals, we have to do something! Why can’t we have needle and syringe programs [in prison]? Let’s just do it”.
In response, Carrie Fowlie, CEO of Hepatitis Australia, explained there are opportunities to advocate for prison CNPs. She stated that the viral hepatitis sector must reinvigorate this discussion, and come at it from a different perspective— very likely from a legal perspective.
Shannon Wright