An understanding of existing barriers to hepatitis C care is important to help empower people with the virus to access help.
Hepatitis C affects thousands of people in the UK. Despite the availability of effective treatment options for hepatitis C, the rate of treatment for the virus in people who inject drugs is extremely low.1 If left untreated, hepatitis C can cause serious or potentially life threatening complications.
Barriers and challenges that prevent people with hepatitis C from accessing care range from:
- Personal barriers, such as low awareness about the seriousness of hepatitis C and care options available
- Environmental barriers like suitable services for people dealing with addiction issues
- Social barriers such as the stigma that people with hepatitis C face
Injecting drug use remains the most important risk factor for hepatitis C infection in the UK; as such, people are frequently blamed for contracting the virus and viewed as ‘irresponsible’ and ‘unworthy’.1, 2 Former or current injecting drug users may carry the burden of being stigmatised for both hepatitis C and addiction.3
This double stigmatisation may cause people living with the virus to refuse or avoid testing, treatment and care, as well as not disclose their hepatitis C status to friends and family.4
Effective care delivered in the context of integrated and supportive care services can play an important role in helping people with hepatitis C to overcome stigma.5 It has been shown that treating health problems such as hepatitis C can also support recovery from drug dependence.6
An example of this is Aspire Drug and Alcohol Services, Doncaster. Aspire is a partnership organisation set up by Rotherham Doncaster and South Humber NHS Foundation Trust (RDaSH) and registered charity The Alcohol & Drug Service (ADS). Aspire works in partnership with the Doncaster hepatitis C nursing service.
Sarah Bartle, a senior drug and alcohol nurse practitioner at Aspire tells us more about her experience with service users experiencing stigma and what measures Aspire have in place to combat this:
There is a strong social stigma attached to both drug misuse and hepatitis C. Our service users often have felt, or still feel, marginalised by society and this judgement can be a barrier to accessing services. To work towards combatting this in our area, we have a number of strategies in place to increase both awareness and understanding of hepatitis C and to remove the stigma associated with the virus:
- Providing education, in a supportive way, to increase knowledge about hepatitis C risk factors
- Offering opportunistic testing using a variety of approaches and contingency management
- Increasing understanding about care options using visible recovery and support groups
- Offering services in a non-judgemental manner, which serve to tackle shame and guilt behaviours
The first contact and engagement with services is critical to a successful outcome. We run a specialist needle exchange and a comprehensive training programme for dispensers, upskilling them on how to provide advice and information to users accessing the exchange.
Practical ways to help people overcome stigma and make services more approachable include:
- Being open and approachable
- You can help a person overcome stigmaby establishing an open relationship, builton trust and respect.
- Considering a holistic approach to treatment
Our service focuses on helping people recover so they can successfully lead fulfilling, independent lives within their communities, free from stigma. I find that through offering education on all areas of health, as well as additional support services, such as bus passes and gym memberships, our users are encouraged to reconnect with society, feel less marginalised by the community and start to feel they are worth care.
My main advice is, don’t give up on someone.
For more information on the Aspire service, which offers a full suite of recovery-orientated interventions and opportunities for people struggling with any form of substance misuse, visit www.aspire.community.
In response to many of these issues, the I’m Worth… campaign has been created to support people living with hepatitis C. It aims to address the stigma that many people with hepatitis C face, encouraging and empowering people living with hepatitis C to access care and services, no matter how or when they were infected.
The I’m Worth… campaign is a disease awareness programme that has been developed and paid for by Gilead Sciences Ltd, a science-based pharmaceutical company. Content development has been supported by input from numerous patient groups with an interest in hepatitis C in the UK. Individual contributors are speaking from their personal experience.
1 PHE. Hepatitis C in the UK. 2015/2014 2 Marinho et al. Hepatitis C, stigma and cure. 2013 3 HCV Advocate. A guide to stigma and hepatitis C. 2014 4 Treloar C et al. Understanding Barriers to Hepatitis C Virus. 2013 5 LJWG. Tackling the problem of hepatitis C 6 PHE. Improving access to, and completion of, hepatitis C treatment. 2015
May 2016 HCV/UK/16-03/CI/1335b