By Andrew Guise, Social Science Lecturer at King’s College London, and Charles Witzel, Research Fellow at the London School of Hygiene & Tropical Medicine
New research has explored the acceptability of remote testing for hepatitis C among people who use drugs. Just as for HIV testing, remote testing for hepatitis C must go hand in hand with access to treatment.
Hepatitis C virus (HCV), like HIV, disproportionately affects key populations, such as people who use drugs or men who have sex with men. Their vulnerability to HIV and HCV is often linked to political, economic and social exclusion and, particularly, to poor access to health systems. Remote testing has long been a focus in efforts to expand access to HIV treatment and care and this strategy is now being consider as a prevention tool for HCV in a number of settings.
Research with people who use drugs in London, UK, has revealed a series of “tensions” in the potential for remote testing for HCV. Focus groups were held with men who have sex with men engaged in chemsex, people who currently inject drugs and people who formerly injected drugs, and these were supported by stakeholder interviews. This allowed exploration with a broad group of people who may benefit from remote HCV testing. As we make clear in discussing the responses, there are many overlaps with experiences of remote HIV testing.
Tension was clear across responses; enthusiasm was combined with a wariness of challenges.
Similar to remote testing approaches for HIV, choice and controlwere commonly described benefits for remote HCV testing: “I quite like the idea actually that you can do this without the big faff around with your clinic, without them taking control of it all, that you take control of it and you take it home.” This was seen by some as a way to manage the stigma attached to HCV and drug use. However, whether such a choice was meaningful was questioned: “Once you do the test, and you find out … so you have to run to the doctor. So, why don’t you go in the first place?”
In line with concerns about similar HIV tests, ease of use was a concern. A self-sampling test involving a relatively large volume blood sample (10μl) drawn from a finger was seen as arduous, complicated and painful: “There’s so many ways this could go wrong.” For that reason, an HCV self-test prototype using saliva was largely preferred.
Embedding remote testing in appropriate care pathways reflected fears that people would test and be lost to care. Many thought remote testing should be linked to engagement with a provider (and so more of a community-based testing model): “I don’t think it’s a solitary process this. I think you need that support and that safety net in place.”.
In contrast to excellent HIV treatment access in the UK, there were complaints about inappropriate healthcare infrastructure and inadequate resource provision for HCV. This critical issue led to questioning the ethics of remote testing under such conditions of scarcity: “I’m on a waiting list waiting for [HCV] treatment. You get awareness. Is the infrastructure in place for dealing with an increase in people?”
An unsupported and uncertain diagnosis was a recurring challenge, chiming with barriers to HIV self-testing. Some feared the repercussions of getting a positive test result in isolation. Potential for alarm was compounded by confusion about the meaning of a positive result. There was a widespread, though not universal, lack of understanding of the implications of an HCV antibody-positive result. These require a confirmatory test to assess presence of the virus (needed as antibodies remain after the virus has been cleared from the body). Remote testing was then described as potentially “misleading” for the 20-25% who will clear HCV infection naturally and for those who have done so through effective treatment.
We link the tensions that respondents described to the specific complexities of diagnosing and treating HCV and also to the social contexts and experiences for many people who use drugs: economic and social marginalization, as well as mistrust of care systems grounded in stigma and abuse. Given these tensions, and health system failures, remote testing for HCV may be of limited value for many people who use drugs. Particular attention must be paid to supporting information, supportive care pathways and engaging people who use drugs in the ongoing development of these.
In our work across the HIV and HCV epidemics, we recognize important similarities and differences in the potential role for remote testing. Both need strong health systems; both are shaped by stigma. Although these approaches have much value for HIV, the health service barriers for people who use drugs and the complexity of the testing process – particularly the need for confirmatory testing – are such that these approaches may not be of similar value for HCV.
Andy Guise, T Charles Witzel
Full reference: Guise A, Witzel TC, Mandal S, Sabin C, Rhodes T, Nardone A, Harris M (2018). "A qualitative assessment of the acceptability of hepatitis C remote self-testing and self-sampling amongst people who use drugs in London, UK." BMC Infectious Diseases 18(1): 281.
The open-access paper is available here: https://bmcinfectdis.biomedcentral.com/articles/10.1186/s12879-018-3185-7
Witzel et al 2016. HIV Self-Testing among Men Who Have Sex with Men (MSM) in the UK: A Qualitative Study of Barriers and Facilitators, Intervention Preferences and Perceived Impacts.
Witzel et al 2017. Risk, reassurance and routine: a qualitative study of narrative understandings of the potential for HIV self-testing among men who have sex with men in England