Barriers to HCV treatment access from the drug user's point of view: stigma, complex lives and damaged veins

Keith Alcorn
Published: 24 January 2019

Despite access to hepatitis C treatment, many people who inject drugs still perceive numerous barriers to starting treatment, including the attitudes of healthcare workers, the difficulty of juggling treatment with competing demands, a lack of support to navigate the healthcare system and problems with blood tests due to damaged veins, an Australian study published in PLOS One reports.

Australia has one of the most extensive hepatitis C treatment programmes in the world. It also has a hepatitis C virus (HCV) epidemic that is highly concentrated in current and former injecting drug users. Recent reports on treatment uptake suggest that after an early rush to access treatment, the number of people starting treatment has plateaued, suggesting that barriers to treatment may exist for people who inject drugs.

A qualitative study designed by the University of New South Wales’s Centre for Social Research in Health set out to identify barriers other than non-availability of treatment to the uptake of direct-acting antivirals (DAAs) by people who inject drugs in the Australian state of Victoria. To achieve elimination of HCV in Australia and other countries where the majority of people living with HCV are current or former injecting drug users, what psychosocial and structural issues need to be addressed?

The study is based on interviews conducted by a peer researcher with experience of injecting drug use and hepatitis C with 24 people who had injected drugs in the past six months. Participants were recruited through community networks by Harm Reduction Victoria at four sites in Melbourne. The study recruited a cross-section of people who declined treatment or deferred treatment, people contemplating starting, people currently on DAA treatment and those who had completed a course of DAA treatment. Interviews took place in 2016 and 2017 and were analysed for themes relating to barriers to treatment.

Key themes

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.

Reference

Madden A et al. Beyond interferon side effects: what residual barriers exist to DAA hepatitis C treatment for people who inject drugs. PLOS One 13 (11): e0207226, https://doi.org/10.1371/journalpone.0207226

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