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, due to its most common transmission routes (the sharing of unsterile injecting equipment), hepatitis C is also a stigmatised disease. 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.
It is unsurprising, then, that receiving a positive diagnosis of hepatitis C can have a negative effect on mental health. Diagnosis is associated with lower self-esteem, social isolation, and fears around disclosure and confidentiality breaches. There are also much higher levels of existing mental health difficulties in people diagnosed with HCV. As Dame Carol Black notes in her independent review of drugs in the UK, “trauma (physical, sexual or psychological) and mental ill-health are the drivers and accompaniment” of drug dependency.
Despite the obvious need for mental and other health services for people with a HCV diagnosis, stigma related to HCV and its transmission routes affect how people interact with health services and can stop people from seeking health care. This not only excludes people from the testing and treatment that could quickly and simply cure HCV, but from accessing mental health and recovery services needed to support the cessation of practices that elevate the risk of acquiring HCV and other blood-borne viruses.
At the Hepatitis C Trust, a group of Peer Researchers have been discussing the use of stigmatising language in policy and research documents and service delivery. We reviewed words and phrases (too many to fit into this blog) used in service delivery, policy and academic papers. Phrases 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’) were highlighted. As the quotes from our meeting demonstrate, language often misrepresents the reality, perspectives and experiences of people who take and/or are dependent on drugs, leading to policy and practice that fails to meet their needs.
Plenty of evidence demonstrates how stigmatising language in policy documents leads to bias and discrimination in service commissioning and design. Health policies have the ability to either enact, mitigate, or ignore stigma processes. Unfortunately, a feature of stigma as it operates within systems and services is a discounting or a ‘mattering less’ of the stigmatised groups. This policy inattention is evident in the considerable disinvestment in recovery and treatment services under the previous government. Other services, such as the provision of adequate needle and syringe provision – crucial in preventing and maintaining HCV elimination in England – remains under-funded and inaccessible for many. Therefore, stigma for people with HCV is enacted and operates on individual, service and system levels, preventing the funding, delivery and take up of services.
Counter to this trend of disinvestment, there has been significant corporate investment in the testing, treatment and (hopefully) ultimate elimination of HCV globally. The World Health Organisation’s elimination strategy acknowledges the difficulty marginalised groups have in accessing mainstream health services and advocates for the use of peers in testing and treatment. The Hepatitis C Trust’s national peer programme provides peer-led testing and treatment support for HCV, outreach to marginalised communities and in-reach into prisons. Peers – people with lived and living experience of drug use and HCV – work closely with people who use drugs to ensure access to and maintenance of HCV care and treatment. Many people engaged by the programme have gone on to become volunteer peers themselves, which has boosted their self-esteem and mental health and helped those who wanted to begin and maintain recovery from drug dependency. More broadly, people accessing HCV testing and treatment through the peer programme have now begun to access broader health services, such as testing for other blood-borne viruses, STIs, and liver checks, demonstrating the potential for peers to engage marginalised groups in vital health services for chronic conditions.
However, once HCV elimination has been reached in the UK, funding for the peer service will most likely disappear, once again leaving marginalised groups to navigate mainstream health services with little or no support. It is crucial that HCV elimination does not become a ‘treat and forget’ initiative, failing to build on the benefits of having peers embedded within mainstream health services.
Peer workers’ ability to successfully navigate the intersection between marginalised communities and mainstream services should not be downplayed here. With the new government’s focus on shifting health care away from critical care in hospitals to preventative care in communities, the expertise of peers is crucial in other ways. Remaining in close dialogue with people who have experience of exclusion and using drugs helps to sense- and sensitivity-check research, policy and practice, including the documents and language used to discuss health issues related to them. This practice supports an intentional anti-stigma approach with the view of developing better, more effective and more reachable health services for people who use drugs with a diagnosis of HCV.
This blog was written in collaboration with the Hepatitis C Trust Peer Researchers
