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Forum probes the heart of the issue

15 December 2017

More than 60 participants attended the Hepatitis Victoria Stigma and Discrimination Forum on December 7 at Melbourne Town Hall, where they heard presentations not only from leading health advocates, but also poignant stories from our HEPSpeakers, those with living experience of viral hepatitis and the stigma that often accompanies it.

“Sharing a personal experience of hepatitis is not an easy thing to do, but it is important to let others understand what it means from a personal perspective,” said Hepatitis Victoria President Frank Carlus in his closing remarks.

Our first HEPSpeaker Pam told how the complaints process can have positive outcomes but “…it’s a stressful journey”.  She talked about the resilience and personal strength she has built she over time by challenging stigma and discrimination as a lived experience speaker. “My outrage and indignation about the discrimination I suffered motivated me to fight for my rights and finally get an apology. I went from feeling like a victim to having a voice,” she said.

Kai explored experiences of stigma and discrimination from a Hep B perspective, illustrating the ups and downs and impact upon her relationships with family and friends. Kai pointed out that knowledge was key in combatting stigma with both her friends and family.  “I feel courage and strength from my family and friends who support me and know about my condition,” she said.

Lisa, our third and final HEPSpeaker, gave the audience an insight into her life, allowing for context and understanding around stigmatising and discriminatory behaviour and how it can create barriers for those who need help and services. Her main point was that certain individuals with viral hepatitis could have “…layers and layers of trauma, so be supportive and non- judgemental.”

The Forum illuminated the reality of stigma and discrimination and how its pernicious and potentially fatal impacts can be tackled from a legal, government and health perspective.

The guest presenters came from “...agencies with significant expertise and important roles to play,” said Mr Carlus.

Dr Bruce Bolam, Chief Preventative Health Officer, from Victoria’s Department of Health and Human Services set the scene for why such an event is necessary, and stressed the importance of reducing stigma and discrimination in health provision to further reduce barriers to helping those with the disease.

In a podcast interview recorded at the Forum, Dr Bolam said that stigma is a “…real barrier and completely unacceptable as it stops people opening up to the fact they have a condition that can be treated effectively.”

Deborah Randa, a Solicitor and Community Legal Education Coordinator, outlined the capabilities of the disability discrimination legal service illustrating the support available. She touched on hepatitis as a disability and the complexities that arise; how discrimination can cover both "...treating people the same and treating them differently."

Justine Vasuitis from the Victorian Equal Opportunity and Human Rights Commission said, “…people living with hepatitis are less likely to come forward for fear of discrimination.” Ms Vasuitis said her organisation was there to support people through the process of making a complaint and that it can help with mediation.

Karen Cussack, the Health Complaints Commissioner outlined the work the Commission does, and said they focus on health professional misconduct on a larger scale. "Poor communication" is one of the most common complaints heard about health services she said.

View the presentations and images from the day, and listen to a podcast interview with Dr Bruce Bolam.

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