Hepatitis C and Stigma
Hepatitis C (HCV) is a blood-borne virus that is most commonly acquired by people who inject drugs. If left untreated, HCV can cause cirrhosis of the liver, liver failure and liver cancer. Unfortunately, hepatitis C is also a stigmatised disease, owing to the most common transmission routes; the sharing of unsterile injecting equipment. As such, people who use drugs with a HCV diagnosis face multi-layered stigma, often seen as instruments of contagion, rather than those deserving of care. [i] The consequences of this are far-reaching, with those most at risk of hepatitis C most disenfranchised from mainstream health provision and the testing and treatment that can quickly and simply cure HCV.
At the Hepatitis C Trust, a peer-led organisation that works to find and treat people with HCV, we have been discussing with our Peer Researchers the power of stigmatising language and its consequences. We reviewed words and phrases used in service delivery, policy and academic papers, such as ‘drug of choice’ (‘it was never a choice, just a necessity’) and ‘substance use disorder’ (I didn’t use because I was disordered, I just couldn’t deal with the trauma’). As the quotes from our meeting demonstrate, language becomes stigmatising when it misrepresents the reality, perspectives and experiences of people who take and/or are dependent on drugs.
The Peer Research team also discussed language and stigma in different contexts. The word ‘addict’ was seen as highly stigmatising and ‘should never be used ’ For others, ‘addict’ was a term they had taken ownership of, used in a transformative way (read more on this here), but, as one team member noted, ‘I know I’ll always be an addict and I know my story with that word, but I don’t think that anyone accessing services should be called an addict, it’s damaging and has long lasting stigma’.
The title (Shooting Up) of the UK Government report that details the extent of infections linked to injecting drugs, including HCV, was also discussed (it’s stigmatising and offensive…it’ll conjure up the worst in people’s minds, using slang, it’s irresponsible). Plenty of evidence demonstrates how stigmatising language in policy documents leads to bias and discrimination in service delivery commissioning and design, leading to unequal and unsatisfactory treatment and health outcomes for people who use drugs. [ii] [iii] [iv] For example, there is still chronic under-provision of needle and syringe provision in England and Wales, [v] despite this being a key intervention for preventing HCV and maintaining HCV elimination once achieved. In terms of commissioning services that might support people who are dependent on drugs more broadly, dramatic cuts to drug and alcohol services since 2012 have seen a 39.5% rise in drug related deaths since the cuts began. [vi] It seems that policy in-attention can be just as damaging as policy with the wrong attention. [vii]
One of the main aims of the Hepatitis C Trust is to reduce the stigma associated with hepatitis C and its main transmission routes, so we are keen to get our communication right. We hope this will help with one of our other main aims; to find and treat all those remaining undiagnosed for HCV. Across England, Scotland and Wales, we have over 150 lived experience peer volunteers who help with this, going out in to communities, sharing their lived experience, persuading people to get tested and helping them to engage with, and maintain, treatment. Trust, relatability and the ‘amelioration of stigma’ have been identified as key components in the success of peer-led services to find and treat people with HCV, enabling better reach into communities and engagement of people marginalised from health service. [viii] [ix] Knowing the right language to use, in the right context and at the right time, is one of the key skills our volunteer peers have.
The expertise of our peers is crucial in other ways. Remaining in close dialogue with people who have lived experience and expertise helps us to sense and sensitivity check our policy and practice. That’s not to say that we always reach agreement. Language, its uses and conceptualisation as stigmatising changes over time and context. Words and phrases that were developed as non-stigmatising previously can become stigmatising as they embed in structures and process that have unequal power dynamics. However, taking an intentional anti-stigma approach, understanding the consequences of stigma and stigmatising language, drawing on lived expertise and remaining open to challenge is a good place to start.
For more information and good practice on non-stigmatising language for HCV, see the following guide:
LanguageMatters-guide-2018_web.pdf (liverwell.org.au)
For more information on the Hepatitis C Peer Researcher team and how to work with us please contact sorcha.daly@hepctrust.org.uk
The Hepatitis C Trust
References:
[i] Tindall, et al. 2010
[ii] Werder, K., Curtis, A., Reynolds, S. and Satterfield, J., 2022. Addressing bias and stigma in the language we use with persons with opioid use disorder: a narrative review. Journal of the American Psychiatric Nurses Association, 28(1), pp.9-22.
[iii] Wakeman, S.E., 2019. The language of stigma and addiction. The stigma of addiction: an essential guide, pp.71-80.
[iv] Bathish, R., Madden, A., Duff, C. and Ritter, A., 2024. Guiding principles for breaking down drug-related stigma in academic writing. International Journal of Drug Policy, 131, p.104515.
[v] Slater, L., Edmundson, C., Emanuel, E., Njoroge, J., Hope, V., Phipps, E., Desai, M. and Croxford, S., 2024. Inadequate needle and syringe coverage among people who inject psychoactive drugs across England and Wales. Drugs: Education, Prevention and Policy, 31(3), pp.358-368.
[vi] Impact of UK Government Cuts to Addiction Services | Rehabs UK
[vii] Link, B. and Hatzenbuehler, M.L., 2016. Stigma as an unrecognized determinant of population health: Research and policy implications. Journal of health politics, policy and law, 41(4), pp.653-673.
[viii] TRELOAR, C., HOPWOOD, M., CAMA, E., SAUNDERS, V., JACKSON, L. C., WALKER, M., OOI, C., UBRIHIEN, A. & WARD, J. 2018. Evaluation of the Deadly Liver Mob program: insights for roll-out and scale-up of a pilot program to engage Aboriginal Australians in hepatitis C and sexual health education, screening, and care. Harm reduction journal, 15, 1-12.
[ix] SUREY, J., FRANCIS, M., GIBBONS, J., LEONARD, M., ABUBAKAR, I., STORY, A. & MACLELLAN, J. 2021. Practising critical resilience as an advanced peer support worker in london: a qualitative evaluation of a peer-led hepatitis C intervention amongst people experiencing homelessness who inject drugs. International Journal of Drug Policy, 91, 103089