Media Release: 16 June 2015
The life-changing experiences of Australians impacted by hepatitis C has been captured in a new book launched today to confront the stigma that surrounds the illness and highlight the need for improved access to treatment.
“Australians from all walks of life have shared their experiences living with, and attempting to treat, this heavily stigmatised, misunderstood and undertreated virus,” said the CEO of Hepatitis Australia, Ms Helen Tyrrell at the book’s launch in Parliament House Canberra.
“Together We Can: See Our Future highlights the need to look beyond how people contract hepatitis C and focus on helping them achieve a cure,” she said.
“Only one per cent of people with hepatitis C receive treatment each year, yet more than 600 people will lose their lives to hepatitis C-related liver disease during this period,” Ms Tyrrell told Federal Parliamentarians at a breakfast briefing.
Alongside the book’s contributors and the CEOs of state and territory hepatitis organisations, Ms Tyrrell explained that a new generation of more effective, faster acting and safer antiviral therapies meant it was “possible to turn hepatitis C into a rare disease in our lifetime”.
Interferon-based hepatitis C therapies can take almost a year to complete, have varying levels of success and are often accompanied by debilitating side-effects that are comparable to chemotherapy.
Because of the heavy toll imposed by interferon-based therapies, many Australians with hepatitis C are putting off treatment in the hope that their liver health doesn’t deteriorate before Australia joins other countries in making interferon-free therapies available.
Ross Williams, a contributor to the Together We Can: See Our Future book, attempted treatment on four separate occasions before achieving a cure.
“I endured two liver transplants and four rounds of therapy before I finally found a cure,” he said.
“It is imperative that we improve the way in which the virus is treated and managed – thousands of lives depend on it,” said Mr Williams.
Another contributor to the book, Ian Pengelly whose uncle is the Liberal Party Senator for Queensland the Hon Ian Macdonald, highlights the importance of family support when undergoing treatment.
“The mental effect that treatment has on you means depression can start to rule your life. Having the support of my family, including my uncle, means everything to me,” he said.
Each story in the Together We Can book includes a comment from a family member or friend, many of whom discuss the importance of a cure. Senator Macdonald lent his support to the push for greater understanding of hepatitis C, providing a heart-felt comment to his nephew’s story.
“As a successful small businessman running his own quality trade services and products business, this treatment made it even more difficult for him to keep up with his very full order book. The fact that he persevered with this difficult treatment is a credit to his courage and determination and also to the support of his wife and family,” Senator Macdonald said.
The Chair and Deputy Chair of the Parliamentary Liaison Group for HIV/AIDS, Blood Borne Viruses and Sexually Transmitted Infections, Senator Dean Smith and Senator Lisa Singh, hosted the launch of the book and provided a foreword, stating: “We are inundated with faceless statistics and forward projections, but rarely are we presented with such compelling real-life stories”.
Ms Tyrrell thanked the book’s contributors for their candour and bravery in discussing what remains a heavily stigmatised illness.
“I hope that people who read this book will recognise that hepatitis C touches every postcode in Australia. I also hope they take inspiration from the book’s title and agree that together we can confront hepatitis C and deliver a cure for those in need.”
Published by Hepatitis Australia, Together We Can: See Our Future is available online and is being distributed to hepatitis organisations and liver clinics nationally.
The Together We Can: See Our Future book project was supported by an unrestricted educational grant from AbbVie Australia.