The rate of hepatitis C infections in Aboriginal and Torres Strait Islander communities in Australia is increasing even as infection rate decreases in the wider community. This is despite the introduction of direct-acting antiviral (DAA) drugs that offer the chance to completely eliminate the hepatitis C virus (HCV).
Across the world, there is a clear disparity in HCV outcomes in Indigenous populations. A new study—believed to be the first published research incorporating a systematic review to explicitly examine the barriers and enablers to diagnosis and treatment amongst rural Indigenous peoples living with HCV in Australia—has looked at what specific problems Indigenous people living in rural South Australia are encountering.
The study, Barriers and Facilitators to Hepatitis C Virus (HCV) Treatment for Aboriginal and Torres Strait Islander Peoples in Rural South Australia: A Service Providers’ Perspective, was published in the International Journal of Environmental Research and Public Health in March.
The study found that key implications for public health policy include emphasising culturally appropriate HCV education for clients, the community, and health service providers. Continued efforts to facilitate the uptake of DAA medications for Aboriginal peoples in rural and remote areas should use a multifaceted approach to provide education to clinicians and the community, increasing HCV knowledge and cultural awareness, and aiding in reducing stigma and discrimination.
In Australia, HCV remains one of the most commonly notified diseases with Aboriginal and Torres Strait Islander peoples (particularly in rural and remote areas) recognized as a high-risk population group. These discrepancies can be exacerbated in rural and remote areas; for example, Aboriginal and Torres Strait Islander peoples living remotely in Australia are 4.3 times more likely to experience a potentially preventable hospitalization than those living in major cities. They are also significantly more likely to be diagnosed with HCV, but access to HCV treatment by Aboriginal peoples in remote communities is halved compared to others residing in urban areas.
…most recent data available demonstrate that the notification rate for new HCV diagnoses for Aboriginal and Torres Strait Islander peoples increased by 15% between 2013 and 2017, while the rate in the non-Indigenous population decreased by 12%…
Worryingly, the most recent data available demonstrate that the notification rate for new HCV diagnoses for Aboriginal and Torres Strait Islander peoples increased by 15% between 2013 and 2017, while the rate in the non-Indigenous population decreased by 12%, a concerning statistic in a time of planned global eradication. New HCV infections within the teenage Aboriginal and Torres Strait Islander male population (aged 15–19) were nine times higher than rates in the non-Indigenous population in the same age group.
Most health service providers interviewed as part of the study identified that both behavioural risk factors and limited knowledge regarding HCV transmission could mean that people are unaware they are at risk of HCV, while one indicated that people would be aware of HCV and some risk factors, such as intravenous drug use, but might not be aware of other modes of transmission. All agreed that there was limited knowledge of the new DAA medications for Aboriginal peoples at risk of HCV, and that therefore their clients might not know that HCV is curable. There was also hesitancy to adopt the new DAAs due to personal or community experience of the much more severe side effects and lower efficacy of previous interferon-based therapies.
Furthermore, study participants suggested that lower levels of education and poorer engagement with health services were barriers to HCV treatment within regional and remote Aboriginal communities. Health services were the locations where clients were most likely to notice information about DAAs, so poor engagement with these services could contribute to the lack of knowledge in the rural community.
a counter-intuitive delaying of treatment until social and emotional needs have been met could contribute to improved outcomes
In interviews with residents of regional and remote Aboriginal communities, many people pointed out that cultural obligations could delay treatment uptake and contribute to poor medication adherence and loss of follow-up. Healthcare workers confirmed these obligations might take precedence over a person’s health: responsibilities in looking after an extended family or the increased burden of dealing with the illnesses of loved ones, and being involved in a high number of funerals. “Sorry business” in Aboriginal communities was more important for clients to attend and a higher priority than health appointments. Study participants suggested that a counter-intuitive delaying of treatment until social and emotional needs have been met could contribute to improved outcomes.
The asymptomatic nature of early HCV infection may impact treatment uptake and completion in rural Aboriginal communities, as clients often do not feel acutely unwell for many years. However, study participants also highlighted that HCV could be considered less of a priority when other comorbidities and Aboriginal peoples’ social and emotional wellbeing are also affected. Over time, the accumulative nature of problems can become overwhelming. Therefore, an approach that focuses on holistic healthcare, which supports both emotional and spiritual health as well as physical, could result in better engagement in health services within regional and remote communities.
Interviews about barriers to accessing treatment emphasised the typically long wait times for referrals to specialists. A shorter wait time between diagnosis and specialist appointments could help reduce the distress associated with being diagnosed. Not linking clients to services or not having frequent and regular specialist access was also identified as a barrier to HCV treatment in a rural setting. Telehealth services within Indigenous communities can help overcome these barriers.
…point-of-care testing had been very beneficial within regional and remote Aboriginal communities, particularly with transient clients.
For some the transient nature of living was noted as a complicating factor that must be considered: frequent moving from place to place was mentioned by study participants as a primary reason for the disruption to the continuity of care and poor medication adherence. Study participants also felt that point-of-care (POC) testing had been very beneficial within regional and remote Aboriginal communities, particularly with transient clients. One focus group also spoke about their relationship with the local prison in providing health summaries after discharge, which enabled follow-up with their clients, further illustrating the benefit of cross-provider solid relationships where strong rapport is built.
‘Transient’ healthcare workers in regional and remote areas was also noted as a problem: some services indicated they relied on locum doctors, and felt this did not allow clients to build sufficient rapport with their clinicians. This jeopardized the aim of providing holistic care, as clients were less likely to discuss their HCV risks, diagnosis, or treatment without trust.
Finally, the related issues of confidentiality, stigma, discrimination, and shame were seen as key issues. Many clients reported concerns regarding how others would perceive them if they disclosed their HCV status, while many also reported previous general negative experiences as Indigenous people within mainstream health services encountering discriminatory attitudes and treatment. Cultural shame was also reported as an important problem: clients often believed they would bring shame to themselves and their friends and family through their HCV status and, consequently, be alienated by their communities. This greatly impacted clients’ cultural identity, with some describing it as the ‘broken spirit’ disease.
Overall, the study emphasises the importance of emphasising culturally appropriate HCV education for clients, the community, and health service providers. Continued efforts to facilitate the uptake of DAA medications for Aboriginal peoples in rural and remote areas should use a multifaceted approach to provide education to clinicians and the community, increasing HCV knowledge and cultural awareness, and aiding in reducing stigma and discrimination.