Hepatitis C‐related discrimination in healthcare

The Medical Journal of Australia ISSN: 0025-729X 2 September 2002 177 5 233234 ©The Medical Journal of Australia 2002 www.mja.com.au Conference Report HOLLYWOOD CELEBRITY Pamela Anderson’s announcement that she has hepatitis C was a major talking point at this recent confere ce. Unlike similar announcements of HIV infection, Ms Anderson has not positioned herself as a celebrity campaigner — there is no princess or pop star championing the rights of people with hepatitis C or demanding extra funding for research or services. Hepatitis C has been characterised as an “epidemic of difference”, affecting people from a wide variety of ethnic, cultural and class backgrounds, with implications for the ability of people with hepatitis C to organise and advocate for changes in policy to improve their lives. Until recently, a study by Crofts et al (1997) was the only example of academic research to focus on hepatitis Crelated discrimination and to highlight the part played by healthcare professionals.2 It is timely that many presentations from the recent Third Australasian Conference on Hepatitis C, held in Melbourne in March 2002, highlighted the discriminatory attitudes and practices of some healthcare workers when treating and working among people with hepatitis C. Presentations discussed both institutional and interpersonal discrimination against people with hepatitis C. The relatively low level of community and government concern regarding this epidemic was alluded to in several presentations, suggesting a form of systemic discrimination. There have been more than 160 000 notified cases of hepatitis C since antibody testing became available in 1990. Alex Wodak (Director, Alcohol and Drug Service, St Vincent’s Hospital, Sydney) described the estimated incidence of 16 000 new infections in 2001 as one every 33 minutes. Given the high prevalence and estimated incidence of the hepatitis C epidemic, Nick Crofts (Head, Epidemiology and Social Research Unit, Macfarlane Burnet Institute for Medical Research and Public Health [Burnet Institute], Melbourne) questioned whether the government response might have been quicker and better funded if hepatitis C primarily affected people other than injecting drug users.5 Similarly, conference presentations from people with hepatitis C, community organisations and researchers challenged the positioning of hepatitis C (in their view) as a “second-class” disease. These presentations indicated that people with hepatitis C are tainted as past or current drug users and suffer attitudes of blame from healthcare professionals, often described as “userphobia”. Grant McNally (Chair, United Kingdom Assembly on Hepatitis C) summarised the effects of these negative attitudes on people with hepatitis C: they take for granted and come to expect substandard levels of healthcare.6 Academic presentations documented the effects of discrimination on prevention, testing, living with hepatitis C, quality of life, treatment and prognosis. A paper by Michael Kerger (Manager, Centre for Harm Reduction, Burnet Institute), Campbell Aitken (Research Fellow, Centre for Harm Reduction, Burnet Institute) and Nick Crofts discussed piloting peer-delivered hepatitis C testing and counselling at a needle and syringe program.7 The authors highlighted current injecting drug users’ fear of discrimination following disclosure of their injecting status to doctors. This fear meant that users often did not present for hepatitis C testing. Max Hopwood (Senior Research Officer, National Centre in HIV Social Research, University of New South Wales, Sydney) and Erica Southgate (Research Fellow, National Centre in HIV Social Research) reported that people with hepatitis C at times feel pressured by healthcare workers to reveal their hepatitis C status.8 They described how some people with hepatitis C were refused medical treatment and had their positive serostatus disclosed to other healthcare workers without permission. Similarly, in discussing women’s experiences of living with hepatitis C while using drugs, Mary O’Brien (Researcher, Australian Centre for Research into Sex, Health and Society, La Trobe University, Melbourne) reported that participants in their study who were current injecting drug users were treated less favourably by healthcare professionals than women with hepatitis C who were not currently injecting drugs. Sandy Gifford (Professor, School of Health Sciences, Deakin University, Melbourne) presented a paper noting the harmful impact of hepatitis C-related discrimination on participants’ qualityof-life measures, including physical and emotional health scores.10 The participation of people from the affected communities provided opportunity for elaboration and reflection on research from the perspective of those primarily affected by hepatitis C. People with hepatitis C spoke informally of feelings of guilt, shame, low self-esteem and self-worth that arose as a result of their interactions with some healthcare professionals. They claimed that internalising stigma led to missed opportunities for care and support from social networks and had implications for people’s access to healthcare services. Deb Warneke (Metropolitan Educator, Hepatitis C Council of South Australia) and Richard Hanssens (Representative, Hepatitis C Resource Centre, Christchurch, New Hepatitis C-related discrimination in healthcare