Hepatitis C: breaking down the stigma David Rowlands’ latest online poll examines the impact of stigma on people diagnosed with hepatitis C virus (HCV). Here he explains how breaking down perceived barriers can help reduce the spread of the virus and aid adherence to treatment.
A diagnosis of HCV has been reported to have a profound impact on social functioning. The perceived stigma associated with HCV infection leads to high levels of anxiety and exaggerated fear of transmission in patients, and can be a major cause of social isolation and reduced intimacy in relationships.
Types of infection
HCV causes both acute and chronic infection. Acute HCV infection is usually asymptomatic, and is only rarely associated with life-threatening disease. About 1545% of those infected spontaneously clear the virus within six months of infection without any treatment. The remaining 55-85% develop chronic HCV infection. Of those, the risk of cirrhosis of the liver is 15-30% within 20 years. Studies suggest that more than 90% of transmission in developed countries takes place through the sharing of non-sterilised needles and syringes in the intravenous drug-using populations.
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Because the vast majority of people with HCV have a history of intravenous drug use, they are frequently blamed for acquiring the disease, and viewed as irresponsible, accountable and ‘unworthy’. Furthermore, as a blood-borne disease, HCV is strongly associated with HIV. This association exists because intravenous drug abuse is a significant risk factor for contracting both diseases and this can be a stigmatising factor for patients. Responding to the poll, John (57) from London, living with hepatitis C for 12 years, said, “I often attend support services and feel that there is stigma from staff and other services users about how I was infected with hepatitis C. People should take time to better understand my experiences and be non-judgmental towards me. We all have very different stories, but hepatitis C has brought us together.” Stigma can be defined as an attitude expressed by a dominant group, which views a collection of others as socially unacceptable. The notion of stigma denoting shameful relations and deviations from what is considered ‘normal’ has a long history within infectious disease, particularly in HIV and, more recently, in HCV.
Much needs to be done to ensure that medical advances lead to greater access to treatment globally
David Rowlands
These norms, behaviours and beliefs surrounding HCV can lead to alienation from family and friends, as well as to discrimination (perceived or real) in health services and workplaces. Stigma can affect self-esteem and quality of life. It can also impede the success of diagnosis and treatment, leading to continuing risk of disease transmission. Since stigmatisation affects not only the individual but also the whole course of the disease, health care workers are not immune to stereotypes and judgements that might influence the course of the treatment of HCV patients. Changing this behaviour will