The Tyranny of Distance
The Hidden Challenges of Living with Hepatitis C in Rural Australia
Friday, 5 March, 2026
“Hepatitis C (HCV) is an easily curable condition.” That is the message health campaigns tend to broadcast.
Modern direct-acting antiviral treatments (DAAs) clear the virus in the vast majority of people who take them, and today a course of medication can be as short as eight weeks.
Yet for many people living with hep C in rural and remote areas of New South Wales and beyond, the path from diagnosis to cure is far from easy.
Distance, stigma, discrimination, privacy concerns, access to services, and the isolation that can come with rural living, all combine to create a set of challenges that the health system, usually designed with cities in mind, struggles to address.
This edition of Users News draws on conversations with Rodd Hinton, NUAA’s BBV & Outreach Lead, and Andy Heslop, NUAA’s Chairperson who lives regionally himself.
They have both spent years working at the intersection of harm reduction, peer support, and blood-borne virus care in both metro and regional New South Wales.
As experienced regional and rural peer work practitioners, their insights reveal a landscape where structural barriers are real and persistent, where the human cost of inadequate support is high, and where the resilience of affected communities deserves far more recognition than it currently receives.
Geography
Physical distance is the most obvious obstacle. In regional New South Wales, huge lengths of land separate small towns from the specialist services that most city dwellers take for granted. A person living in a town of several thousand people may find that the nearest liver clinic, fibroscan machine, or specialist doctor is hours away.
This distance is not just inconvenient, it creates a cascade of practical barriers.
To access diagnosis and treatment, a person may need to take multiple days off work, arrange transport (often without access to reliable public transport), and find somewhere to stay overnight, sometimes sleeping on a friend's couch because they cannot afford accommodation.
Both Rodd and Andy highlight the fact that these financial, social, and physical costs mean navigating the health system becomes a huge labour — emotionally, physically, and mentally.
The problem is compounded by the often inconsistent nature of services in smaller towns. Rather than a consistent GP or specialist, people may encounter a locum doctor who visits once or twice a month, covering several towns in a single week. If you are not ready on the one day that doctor is in your town, you miss your opportunity for that month. Before the expansion of telehealth, this could mean weeks or months of delay in beginning or continuing treatment.
Hep C treatment itself also demands multiple in-person steps that cannot be done via telehealth. Blood tests, fibroscans to assess liver health, follow-up pathology, all of these require physical attendance at facilities that may simply not exist locally.
As Andy noted, smaller regional towns often lack the equipment and trained operators needed for the necessary assessments, sending people on journeys to larger regional ‘hubs’ for each stage of their care.
Stigma & small-community life
In cities, anonymity is a form of freedom. If you have a difficult experience with one health service, you can go to another. If you need to access medication and feel self-conscious about it, you can travel to a different suburb.
You have what Andy calls 'headroom'. Room to be yourself, to make mistakes, to have needs, without everyone around you knowing about it.
In a small rural town, that headroom can disappear entirely.
Everyone knows everyone. The receptionist at the clinic might be your neighbour. The pharmacist might be friends with your family. The nurse on duty might go to the same church. This is not hypothetical. It is the reality described by people who live and work in these communities, and it has profound implications for how people navigate care.
The fear of being identified as someone with hep C, a diagnosis still strongly associated with injecting drug use, can prevent people from seeking help at all.
In rural and remote communities, this stigma often runs especially deep. Conservative social values, tight-knit family networks, and the visibility that comes with living in a small place mean that a diagnosis of hep C can feel like a public declaration of shameful behaviour.
For Aboriginal people on country, where hep C carries particular taboo and where community elders are prominent gatekeepers of social norms, this burden can be even heavier.
Rodd, a Gangalu man himself, explains that across the board, people may already know they have hep C, but are very hesitant to visit the GP, community health centre, local Aboriginal Medical Service, and don’t want to fill a prescription at the local pharmacy. For them, the risk of being seen, recognised, or talked about is simply too great.
This is not irrational behaviour. It is the unfortunate reality of how small communities work.
Even in health care settings with robust legal protections around confidentiality, breaches happen. The fear of a breach, the anxiety of wondering whether your information might be passed on to a family member or employer, is enough to cause someone to avoid care. The mental toll of managing this kind of visibility and stress is rarely factored into discussions of rural health.
Limited options
In metropolitan areas, people living with hep C have access to specialised clinics, sexual health services, community health centres, and networks of peer workers who can guide them toward the most appropriate, and most trustworthy care. In rural areas, a GP is often someone’s only option, and the quality of that care can vary greatly.
Rural GPs who see hep C infrequently may be operating with out of date knowledge and treatment protocols. In these situations, confusion can arise.
For example, Andy recalls instances of GPs ordering antibody tests for people who have already been treated and cleared the virus. When the antibody test comes back positive, they misinterpret the result as a new infection. For a person who has already navigated a complex emotional and logistical journey to treatment, being told they may have hepatitis C again can be deeply distressing.
Beyond clinical knowledge, there is the question of attitude.
People living with hep C, particularly those with lived experience of injecting drug use, describe encounters with health professionals who ask inappropriate questions who apply unnecessary precautions like double-gloving, or whose administrative staff are unwelcoming in ways that make the whole environment feel hostile and unsafe.
In a city, you can simply find another provider. In a town where there may only be one GP, you have no alternative. You either endure the discomfort, or you stop seeking care.
The pharmacy experience carries similar risks. In many regional areas, the independent community pharmacies have been bought out by larger chains. This may mean personal relationships that once made small-town dispensing feel safe have eroded.
Pharmacists who stock and regularly dispense hep C medication are more likely to handle it knowledgeably and discretely. Those who rarely see these prescriptions may be less prepared, both logistically and in terms of patient sensitivity. For people who are already anxious about being seen at a pharmacy counter, an awkward or stigmatising encounter can be enough to stop treatment entirely.
For some smaller pharmacies, the upfront cost of stocking a full course of medication, which can cost tens of thousands of dollars per treatment course before reimbursement, may also present a practical barrier to reliable supply.
Limitations of Telehealth
The COVID-19 pandemic accelerated the expansion of telehealth in Australia in ways that have genuinely benefited people in regional and remote areas.
Appointments that once required hours of travel can now happen via a screen or phone call. For ongoing monitoring, prescription renewals, and check-ins with specialists in Sydney or other major cities, telehealth has been a meaningful improvement.
But telehealth has its limitations, particularly for a condition like hep C, where diagnosis and treatment require physical presence at multiple points.
Blood must be drawn. Fibroscans must be done in person. When comorbidities are present, kidney problems, liver complications, or other conditions common alongside hep C, a screen cannot substitute for an in-person examination.
Telehealth, as Andy observed, functions well as a 'single purpose' tool: useful for a specific, clearly defined appointment, but not a replacement for the kind of integrated, in-person care that many people living with hep C actually need.
There is also a deeper issue: access to telehealth is not universal. In truly remote areas, reliable internet connectivity may not exist. Older residents, people without smartphones or computers, and those who cannot afford data plans may find telehealth inaccessible.
The assumption that digital healthcare is available to everyone simply because it exists is one that disadvantages already marginalised rural communities.
Peer support
Peer workers — people with lived experience of injecting drug use and blood-borne virus infection who are trained to support others navigating similar challenges — are widely recognised and strongly evidenced as effective front-line workers in HCV care and support.
When someone can speak to a peer who has been through diagnosis and treatment themselves, who understands the shame and fear, who can normalise the experience and explain what to expect, the likelihood of someone engaging with care increases substantially. Knowing that someone like you got through treatment and truly understands your experience can be transformative.
In rural areas, however, access to peer support can be inconsistent. Organisations working in this space may typically visit regional sites only once a month, once a fortnight, or sometimes less.
A peer worker who travels from Sydney to Broken Hill or Wagga Wagga is doing extraordinary work, but they are not a consistent presence.
The warm relationship built over a few visits is interrupted by weeks of absence. People who need support between those visits, who have a question about their medication, who are confused by something a doctor told them, who are simply struggling, may not have anyone to turn to.
Where peer workers are embedded within health services in rural areas, the experience of those services changes measurably. Waiting rooms feel calmer. People are more willing to ask questions. The dehumanising quality that can come with visiting clinical services, feeling like a number, feeling judged, feeling unsafe, can improve when there is someone in the room who shares your experience and is there specifically for you.
The inconsistency of peer support in rural areas is not because of a lack of effort or intent, it is due to a lack of resourcing. Both Rodd and Andy acknowledge that the people who do this work are often stretched thin, covering vast geographic areas on funding that does not match the scale of need.
Similarly, peer workers embedded in rural health settings may be left without adequate supervision, governance, or support, and the people they serve are left without the consistent, high-quality connection they need.
Loneliness & quality of life
Behind all of the structural barriers lies a more subtle but equally real problem: loneliness. The World Health Organisation has formally recognised loneliness and social isolation as a major global health concern, and its effects are often prominent for marginalised people in rural areas.
For someone living with hep C in a small town, their social world may be very small. If they cannot be open about their diagnosis, they lose the opportunity for the kind of authentic connection that comes from being known and accepted.
If their closest peers are also using drugs, their support network, though meaningful, may itself be entangled with the very circumstances that make treatment more difficult. If social groups in the area are limited and do not reflect someone’s lived experience or interests, finding community becomes challenging.
When your friendship circle is small, the weight each person carries for the other becomes heavier. The bonds of mutual reliance that might feel supportive in one context can sometimes feel heavy when there are only a handful of people sharing the load.
When people feel isolated and othered by their own community, subjected to what one practitioner described as the quiet accumulation of stigma, microaggressions, and exclusion, they can begin to internalise those negative judgements, and may take on the very behaviours that stigma expects of them, deepening the cycle of marginalisation.
These added dimensions of rural experience, the loneliness, the loss of dignity, the erosion of quality of life, are rarely captured in treatment statistics or service delivery reports.
They are the lived experience of what it means to be stigmatised and far from help, and they deserve more attention.
Financial burden
The financial costs associated with managing hep C rurally extend well beyond the out-of-pocket cost of healthcare itself.
Travel to regional hubs or cities for appointments, sometimes hundreds of kilometres each way, means fuel costs, or the cost of a bus or train if there is one available. It means time off work, which for people in casual or precarious employment can mean lost income. It means accommodation if an appointment is too far to return from in a single day. For those who rely on others to get there, it may mean calling in favours from a social network that is already stretched thin.
For people managing multiple health conditions simultaneously, the question of which health issue to prioritise in any given week becomes a painful calculation. Which appointment cannot be missed? Which can wait? The deferral of care that results from these impossible choices compounds health problems over time.
There have been meaningful improvements in financial access to care in recent years. The expansion of bulk billing, the move to community dispensing of S100 medications, and the simplification of hep C treatment & medications have all reduced some of the burden.
But for many people in rural areas, the financial and logistical cost of seeking care remains a genuine challenge.
Where to from here
Rodd and Andrew have worked regionally, providing peer support for people living with hepatitis C, and are clear about what makes a difference, even when resources are limited.
Trauma-informed, person-centred care, delivered by practitioners who understand the complexity of lives affected by drug use, stigma, poverty, and marginalisation, is not a luxury. It is the baseline condition for people to feel safe enough to show up. If someone does not feel safe enough to walk through a clinic door, all the best treatments in the world are irrelevant.
This means investing in training at every level of the health system.
Not just for doctors, but for nurses, pharmacists, receptionists, and administrative staff. In settings where alternatives do not exist, the first point of contact determines whether care is accessed at all. A cold or dismissive phone interaction can be enough to turn someone away permanently.
It means expanding and adequately resourcing peer work, so that people in rural areas have access to consistent, sustained peer support, not just periodic visits from someone based hours away. It means ensuring that peer workers embedded in health services have proper guidance and support, so that the work does not simply fall on one person's goodwill.
It means designing services around where people actually are, rather than expecting people to travel to where services happen to be located. Some health districts are already posting medications to clients who cannot easily reach a pharmacy. Small innovations like this have and had a great impact on treatment uptake.
And it means taking seriously the social dimensions of health: the loneliness, the stigma, the erosion of dignity that comes from living with a condition that continues to be morally weighted.
Hep C is curable.
But the conditions that make it harder to cure in rural Australia, the distance, the judgement, the isolation, the absence of adequate support, will require consistent, systemic attention to address.
The need is not in the inner city alone. It is in the towns and communities spread across rural and regional New South Wales, and that is where effort must also be directed.
Building the workforce: INHSU Community of Practice
Improving outcomes for people living with HCV in rural and remote Australia is not only a question of what services exist, but of who is doing the work and how well supported they are.
Across the country, health professionals, peer workers, nurses, and program staff are facing similar challenges, and doing so largely in isolation from one another.
Thankfully, aA new national initiative is seeking to change that.
The International Network on Health and Hepatitis in Substance Users (INHSU) has launched a Community of Practice for Hepatitis C Care in Regional and Remote Australia, developed in partnership with the Burnet Institute’s Eliminate C Australia (ECA II) team.
The initiative is designed to connect people doing this work in similar environments, across different states, different service types, and different communities, so that they can share ideas, learn from each other, and feel less alone in tackling problems that no single organisation or individual can solve.
The Community of Practice was built on a genuine evidence base.
Before designing the program, INHSU conducted a thorough needs assessment, surveying people working in the field and conducting in-depth interviews with clinicians, peer workers, policy staff, and program leads from across regional and remote Australia. The findings were striking in their consistency.
When asked about the main barriers to hepatitis C care in their region, participants identified stigma and discrimination as the most significant factor, by a large margin.
Other themes that emerged strongly included competing demands on clients’ and workers’ time, cultural safety concerns, workforce shortages, travel barriers, limited services, and funding constraints.
These are the same issues explored throughout this article. It is significant that the people delivering care on the ground identify them as clearly as those receiving it.
The Community of Practice brings together people doing similar work in similar environments to share ideas, build connections, and strengthen the path to hep C elimination in the places where it’s most needed.
The centrepiece of the Community of Practice is a series of six practical webinars, each focused on a topic identified as a priority by the workforce itself.
These sessions are designed as spaces where real-world practitioners can share what they have learned, hear from peers in similar roles around the country, and leave with ideas they can actually use.
Each webinar is followed by a curated resource package, including case studies, infographics, and articles, to support people in applying new approaches in their own context.
Between sessions, an email series keeps participants connected and highlights the work of community members through spotlights that celebrate innovation happening quietly, often unrecognised, in services across the country.
What makes this initiative particularly valuable is the recognition that improving rural HCV care requires more than new policies or additional funding. It requires building a workforce that feels connected, confident, and capable. A community of practice creates the infrastructure for learning to flow.
The Community of Practice is open to anyone supporting hepatitis C care in regional, rural, or remote Australia. GPs, nurses, peer workers, AOD and mental health service staff, program managers, and people with lived or living experience of HCV are all welcome.
Participation is free, flexible, and requires no prior preparation. People can join partway through the series, attend only the sessions most relevant to them, and contribute as much or as little as they are able.
For anyone working to support people with HCV in rural and remote Australia, the isolation of that work, the sense of being far from help, far from peers, and far from the networks that sustain practice, is a professional version of exactly what their clients experience.
Initiatives like the INHSU Community of Practice will not solve all the structural problems described in this article, but they do something important. They remind people that they are not doing this work alone, and they create the conditions for the kind of cross-sector, cross-geography learning that can, over time, move the dial.
The first webinar kicks off on Thursday 12 March 2026. To join the Community of Practice and register for upcoming sessions, visit the INHSU website or email info@inhsu.org with any questions or resources to share with the network.