Being asymptomatic led people to ignore their diagnosis and not to engage with medical care for hepatitis C, and interviewees said that they received little information about the impact of hepatitis C on their health or the likely progression of liver disease.
People deferred treatment for a long time due to lack of symptoms, but other commitments also kept people from engaging with the idea of treatment. Work, pregnancy and childrearing claimed the attention of interviewees, as did less specific anxieties about the time not being right to undertake a course of treatment.
Interviewees were also put off seeking treatment by advice from healthcare providers to wait for new drugs or confused about whether they were eligible for treatment if they continued injecting drugs.
Long-term injectors with many damaged veins saw difficulties in undergoing a course of treatment that might entail numerous blood samples.
“The big barrier for me is that no one can get blood out of me, I’ve just got no veins and I mean this has been problem for the last 10 or so years,” said a 64-year-old woman.
Several interviewees commented unfavourably on the competence of healthcare workers who drew blood. “It’s just quicker too and less painful if I can do it,” said another woman, aged 42 years. Self-sampling and the use of dried blood spots to collect samples were seen by some interviewees as important tools for achieving higher rates of diagnosis and treatment uptake among long-term injectors. (Taking blood for diagnosis and HCV viral load testing at the same visit needs more attention, say the study investigators.)
Despite a push for treatment of hepatitis C through primary care in Australia, some primary care physicians caring for people who use drugs had told interviewees to seek specialist hepatitis care if they wanted DAA treatment. Primary care physicians had shown little inclination to carry out regular monitoring in their patients with hepatitis C and interviewees reported that few primary care physicians were taking the opportunity to prescribe DAAs.
For some, the numerous competing demands of managing opioid substitution therapy, co-morbid conditions, childcare and mental health conditions made it difficult to access DAA treatment or to travel to healthcare facilities where it was available. Intermediary services that can help to connect people to treatment – for example, by providing transport – are needed, the study investigators recommend.
Finding non-stigmatising and accepting healthcare workers also represented a barrier to care. Many interviewees had internalised stigmatising messages from healthcare workers and others. They felt that physicians considered treating people who inject drugs “a waste of time” and that they would be denied re-treatment if they became reinfected.
Interviewees agreed that information on where to access non-stigmatising services that provide DAA treatment would encourage people to seek treatment.
The researchers say that to increase treatment uptake, countries like Australia need to look simultaneously at patient and provider barriers to treatment, as well as systemic obstacles, and need to acknowledge past deficits in care to address distrust of the health system and healthcare providers. Community and primary care barriers need attention alongside barriers in specialist liver care.
“Efforts to increase DAA treatment uptake must reduce stigma and discrimination as a central precept to any effective response,” they conclude.