Stigma and health literacy track with hepatitis C care gaps in Melbourne cohort
Direct-acting antivirals have made hepatitis C a treatable infection, yet treatment access still breaks down long before viral clearance becomes possible. In Melbourne, baseline data from the eliminate hepatitis C experience cohort show how those failures cluster in people who inject drugs: at the start of follow-up, one group was not engaged in testing, another had HCV RNA positivity but remained outside treatment, and a smaller group was already engaged in treatment. The study provides a practical view of where the cascade stalls and why routine contact with health services does not necessarily translate into HCV care.
The cohort enrolled 288 participants between 19 September 2018 and 15 December 2020 across community and private primary healthcare services. Median age was 42 years, with an interquartile range of 37 to 49 years, and 198 participants, or 69%, were male. Baseline classification divided participants into three care cascade groups: 103 people, or 36%, self-reported being not engaged in testing; 127, or 44%, had HCV RNA positivity but were not engaged in treatment; and 58, or 20%, were engaged in HCV treatment. Those proportions matter because they show a large reservoir of unmet need even in a setting where direct-acting antivirals are available.
A majority of participants were in regular contact with multiple health services, and most had already been identified as being at risk for HCV. That finding cuts against any simple assumption that lack of access alone explains low testing and treatment uptake. Many participants were already moving through health systems, but the pathway into HCV diagnosis and treatment still remained fragmented. In clinical terms, this suggests that service contact without targeted engagement is not enough to convert risk recognition into cure.
Regular healthcare contact did not erase the treatment gap
The baseline data point to a familiar but stubborn bottleneck: people who inject drugs often encounter healthcare, yet HCV care may still be deferred, delayed, or never actively pursued. The cohort sat inside primary care environments where diagnosis and treatment should be achievable, but the care cascade still split into three distinct groups. That pattern fits with the operational reality of HCV elimination efforts, where the challenge is not simply drug availability but also the ability to identify infection, move rapidly to care, and keep patients engaged through the steps that follow.
The study also examined stigma and health literacy, two factors that influence whether a patient trusts advice, returns for testing, or accepts treatment. In the 12 months before baseline, 70% of participants reported any experiences of stigma related to injecting drug use. That is not a marginal background issue; it is a dominant feature of the care environment. Stigma can reduce willingness to disclose drug use, discourage repeat attendance, and make health encounters feel punitive rather than therapeutic. For a blood-borne virus like HCV, those pressures can interrupt testing and treatment long before a clinician reaches the point of prescribing therapy.
A single social barrier can echo through an entire care pathway.
Health literacy gaps were concentrated in the least engaged groups
Health literacy analysis identified gaps in two domains among those not engaged in testing and those not engaged in treatment: ability to appraise health information and ability to actively engage with healthcare providers. Those domains are clinically meaningful because they sit close to the decisions that determine whether a person moves from awareness to action. Appraising information includes judging whether advice is relevant, credible, and applicable to one’s own situation. Actively engaging with providers includes asking questions, seeking clarification, and participating in decisions rather than passively receiving instructions.
For people navigating unstable living conditions, substance use, or previous negative experiences with healthcare, these skills may be harder to deploy consistently. The study does not claim that low health literacy alone caused non-engagement, but it does show a clear association between care cascade position and these two capabilities. In practice, lower confidence in interpreting health information can leave people uncertain about testing intervals, treatment benefits, or the urgency of follow-up after an HCV RNA result. Weak engagement with providers can make it easier for opportunities to slip away during short appointments, especially when services are busy or fragmented.
The baseline picture therefore suggests two simultaneous problems. One is structural: patients are moving through services without being captured into HCV care. The other is interpersonal: stigma and communication gaps may be eroding the quality of those encounters. When both are present, the result is predictable—people remain outside testing or treatment even while they keep interacting with the health system.
Implications for HCV elimination work in primary care
These findings matter for elimination strategies because they identify where intervention can be concentrated. Primary healthcare settings already represent a reachable point of contact, and the cohort demonstrates that many participants are already known to services. The next step is not simply broader access in the abstract, but more deliberate linkage from risk recognition to testing, RNA confirmation, and treatment initiation. That process likely needs to be built around nonjudgmental communication, simplified pathways, and support that helps patients understand what HCV testing and treatment mean for them personally.
The data also support a more explicit focus on stigma reduction. If 70% of participants reported stigma tied to injecting drug use within the past year, then HCV programs cannot treat stigma as an external social issue unrelated to viral elimination. It is part of the mechanism of non-engagement. A patient who expects blame or dismissal is less likely to return for testing, less likely to ask about treatment, and less likely to stay connected long enough to complete care.
Health literacy interventions need the same level of attention. The gaps identified here are not abstract educational deficits; they are functional barriers that affect whether a person can interpret advice and act on it. Clinicians and services may need to adapt communication styles, use clearer explanations, and create repeated opportunities for questions and follow-up. For a population already in contact with multiple services, the issue is not whether contact exists. It is whether that contact is being converted into timely hepatitis C care.
The cohort will continue longitudinally, which should clarify how these baseline patterns evolve over time. For now, the starting point is unmistakable: in this Melbourne sample of people who inject drugs, stigma and health literacy gaps sit alongside persistent underuse of HCV testing and treatment, even in the presence of regular healthcare contact.