Living with Hepatitis C
EMBARGOED UNTIL 12.00 NOON SUNDAY 14 MARCH 2004
Compassion for people with hepatitis C and accurate information about preventing its transmission will benefit the wider community, according to one person's account of living with the disease, published in the current issue of the Medical Journal of Australia.
Lisa Waller, President of the Hepatitis C Council of NSW, was diagnosed with hepatitis C in 2000 following a brief encounter with heroin in 1985. She said discrimination against people with the disease rears its head in healthcare settings, at home, in social situations, at school and in the media.
"Although there are 225,000 people living with hepatitis C in Australia, many fear the consequences of disclosure in their daily lives," Ms Waller said.
Lisa Waller's account of her GP's response to her diagnosis on 27 March 2000 justifies these fears.
"I felt that my GP's diagnosis was not that I had a serious liver disease, but an untreatable moral malady. I felt like a piece of human debris, unclean and totally unworthy. My doctor offered almost no information on the disease and gave me a nine-year-old brochure full of incorrect information.
Waller's diagnosis coincided with the NSW Health Department's launch of the world's first Hepatitis C mass media public awareness campaign.
"Doctors were talking about treatment and there was some discussion about discrimination. I rang the Hepatitis C Council of NSW helpline the next day and received accurate information, support, and referral to my local liver clinic. I was on the road to recovery, but the shame I felt about my positive status was hard to overcome.
The NSW Anti-Discrimination Board enquiry into hepatitis C-related discrimination in 2001, C-change, found many cases of stigmatisation resulted from ignorance about the virus and how it is transmitted, but it was the close association between infecting drug use and HCV infection that was the main source of discrimination.
"Educating the community and health workers about Hepatitis C - what it is, who contracts it and how it is contracted - would be difficult, but changing public perception about people with hepatitis C is far more difficult to tackle," Waller said.
"I believe the Australian Government's proposed Disability Discrimination Amendment Bill aims to overturn a Federal Court decision in 2000 that found addiction to a prohibited drug could be regarded as a disability. If the bill becomes law, illicit drug users (and their families) could, in some circumstances, face legalised and institutionalised discrimination. This would be a further disincentive for people to seek diagnosis and treatment.
"Around 40% of the relatively small number of people who undergo treatment become free of the virus. I consider myself extremely fortunate to count myself as one of them. But it was not just the medicine that made me better. Love, understanding and compassion are great healers that many with hepatitis C just don't experience.
CONTACT Lisa WALLER, 0412 273 749
Judith TOKLEY, AMA 0408 824 306 / 02 6270 5471