NDARC Technical Report No. 262 (2007)
Most Australians who have hepatitis C contracted the virus through the shared use of drug injecting equipment. Further, the prevalence and incidence of hepatitis C virus (HCV) are high among Australian injecting drug users (IDUs), around 50 to 60 percent and 15 percent respectively. The task, therefore, of controlling the spread of hepatitis C depends largely on controlling transmission among IDUs. Although there is a considerable body of research describing hepatitis C epidemiology and infection risk factors, very little research has examined IDUs’ understanding of hepatitis C. The aim of the current study, therefore, was to examine IDUs’ knowledge of hepatitis C, their understanding of virus transmission, the clinical markers and symptoms of the virus, and treatment in particular. How IDUs prioritise hepatitis C relative to other life areas was also examined.
A cross-sectional survey, using an interviewer administered, structured questionnaire, was conducted across inner-city, suburban and regional sites of New South Wales. Participants were recruited through advertisements at needle and syringe programs (NSPs), methadone clinics, and snowballing (word-of-mouth) techniques. Participation was not determined by hepatitis C status.
One hundred and forty nine IDUs were interviewed. The median age of the sample was 34 years and approximately two-thirds were male. The median age of first drug injection was 17 years, with the most commonly reported illicit drugs injected in the last month being amphetamine (62%) and heroin (61%). Over half of the sample (62%) was in treatment for drug use at the time of interview, with the majority in a methadone or buprenorphine program. Over half the sample rated their knowledge and understanding of hepatitis C as either ‘good’ (30%) or ‘very good’ (23%).
Testing for hepatitis C was common among the sample, with all but one participant tested for hepatitis C in their lifetime, and the majority (74%) tested one or more times in the past 12 months. ‘Routine screening’ was the main reason selected for their last test (39%), followed by ‘mandatory testing’ (13%) and then ‘risky behaviour’ (12%). Seventy six percent of the sample believed they had hepatitis C at the time of interview. Despite most participants reporting recent and often multiple testing, a number of IDUs were clearly confused about the results of the various tests. Only about 40 percent of those tested during or after 2000 reported receiving pre- and post-test counselling.
Significant gaps in IDUs’ knowledge of hepatitis C were uncovered in the study, with respect to transmission risks, symptoms, clinical markers and treatment. For instance, substantial proportions of participants believed it was possible to contract hepatitis C by re-using their own needle (48%), or from dirt (17%). Forty-two percent of participants believed antibodies to hepatitis C gave protection against acquiring the virus (42%), and over one-third (35%) believed that some people are immune to hepatitis C. IDUs’ understanding of their own hepatitis C infection was similarly confused, with one in five participants who reported having hepatitis C believing they could not infect others (19%), and that they were immune to hepatitis C (19%). One in three participants stated they did not have antibodies for hepatitis C, and an even greater number were unsure, despite reporting themselves to have hepatitis C.
Very few IDUs were found to prioritise hepatitis C highly relative to other life areas. For many IDUs, hepatitis C appears to be a relatively low priority compared with the numerous health, welfare and social concerns that exist among this often economically and socially marginalised group. However, health was frequently selected as one of the most important life areas determining quality of life, which may incorporate symptoms and sequelae resulting from hepatitis C impacting on day-to-day life.
Given the high prevalence and incidence of hepatitis C among Australian IDUs, and that many continue to share injecting equipment, the findings of this study are of great concern. The fundamental misconceptions held about hepatitis C, particularly regarding ‘antibodies’ and their perceived role in providing immunity, place IDUs at serious risk of transmitting and contracting hepatitis C. These findings warrant further development of, and research into, strategies to improve IDUs’ understanding of hepatitis C.
Citation: O'Brien, S., Day, C. Black, E., Thetford, C. and Dolan, K. (2007) Injecting drug users' understanding of Hepatitis C. Sydney: National Drug and Alcohol Research Centre.