Lived Experience Advisory Committee

Andree is a dedicated member of the Lived Experience Advisory Committee for LiverWELL and a passionate speaker on lived experience with Hepatitis C. She was honored with the LiverWELL Mark Farmer Award in 2018 for her contributions to the field. With a background as a community worker and experience as an AOD support and welfare worker in various settings, Andree has developed a deep commitment to supporting those in need.

In addition to her community work, Andree served as a research consultant in Cambodia for a local NGO, focusing on projects that address maternal mortality, HIV, and gender responses. She is particularly interested in and skilled at story collection and engaging at the grassroots level. Andree loves exploring and analysing stories, readings, and additional ideas to create layers of connection, which can inform programs that strengthen the reframing of the Hepatitis narrative.

Her dream is to foster a more visible and normalised response to liver health, ensuring that it receives the attention and support it deserves.

David was diagnosed with hepatitis B in 1993, which was eventually shown to be a work-related injury after two gruelling court cases. In 2003, this led to liver cancer, and he had surgery for a large tumour after being informed it was likely too late for any treatment. At the time, the five-year survival rate for someone diagnosed with liver cancer was 11%, so he feels very fortunate to be alive 20 years later.

As a result, David tries to “give back” by volunteering in various capacities. Currently, he serves on several bodies with Cancer Council Victoria, including the Community Reference Committee, Community Advisory Network, Human Research Ethics Committee (as a reserve member), and as a Cancer Connect volunteer. He is also involved with the Australian Living Evidence Collaboration at Monash University and is a member of the LiverWELL Lived Experience Advisory Committee (LEAC).

David has also acted as a judge for events such as the University Challenge on liver cancer for LiverWELL and the Elaine Duxbury Scholarship for Cancer Council Victoria. When requested, he does speaking engagements, although there aren’t many required in East Gippsland! He also reviews various draft publications upon request. Last year, David served on the expert panel and Community Reference Group for the “Roadmap to Liver Cancer Control in Australia” through Sydney University and the Daffodil Centre.

He was astonished but honoured to receive the LiverWELL Mark Farmer Award in 2022 and was also able to help judge the 2023 recipient.

Jane has contributed to both Victorian and Australian working groups and committees on viral hepatitis and is currently on the Lived Experience Advisory Committee and also a Board member on the Community Advisory Board at the Doherty Institute as a person with Lived Experience.’ Our 2016 Mark Farmer Award Winner, Jane is a passionate advocate for raising awareness and providing support for those with viral hepatitis.

Jane has been involved in public speaking engagements, radio interviews and live television appearances since her diagnosis and eventual clearing of the virus in 2016. Jane is committed to encouraging and empowering others to come forward and seek treatment.

Mei is an advocate for Hepatitis B liver disease. Her advice for people living with hepatitis is to be brave and curious. She urges people to try not to feel shame about having liver condition and encourages them to seek information and education about liver health.

Mei’s journey from being aware of hepatitis to becoming a dedicated advocate showcases the transformative power of education and support, that she received when starting to volunteer at LiverWELL. Her experience with the healthcare system in Australia has been positive and consistent. However, her encounter with stigma highlights a significant barrier that many face in seeking diagnosis and treatment.

Ultimately, Mei’s hope for an end to liver disease stigma reflects a commitment to promoting health equity and dignity for all individuals affected by hepatitis. Though her advocacy efforts and collective efforts of communities locally and worldwide, her vision of a future free from hepatitis stigma can become a reality.

Steven is a social worker, student, and performance poet living in Melbourne. He contracted hepatitis C at the age of 14 through the Alfred Hospital while receiving numerous blood transfusions as part of his treatment for hemophilia, a bleeding disorder. Growing up with hepatitis C, Steven felt isolated and was not provided with adequate support or information about his condition, leading him to believe he could not touch people. It wasn’t until several years later that he learned this belief was incorrect.

In the early 2000s, interferon treatment began to be offered to hemophiliacs, and as Steven’s liver started to deteriorate, he was placed on a six-month course of treatment. Despite the challenges of enduring months of a rigorous treatment regimen with ribavirin, the medication was successful, and he was declared clear of the virus in early 2006.

Since then, Steven has embraced a healthy and happy life and is passionate about helping others living with hepatitis C. He is committed to breaking down the stigma surrounding the virus, which often prevents individuals from seeking or receiving treatment, ultimately contributing to higher infection rates within the community. Steven believes that everyone deserves healthcare and medical treatment free from judgment, regardless of their social status or lifestyle.

Wendy Lo is a patient-turned-advocate for liver health and hepatitis B elimination. After being diagnosed with hepatitis B and living in silence for 28 years, she shared her story in 2022 to raise awareness. Since then, Wendy has worked to promote education, tackle stigma, end discrimination, influence policy, and advance curative research.

Her involvement spans community outreach, education, fundraising, Capitol Hill advocacy, and collaborations with industry, medical societies, and academic institutions. Wendy serves as a patient representative on AASLD’s Public Policy Committee, a member of Hep B Foundation’s Global HBV Community Advisory Board, and an educator for SF Hep B Free – Bay Area.

Wendy is also a wellness coach, certified in Functional Medicine, ACE personal training, and meditation. With 20 years in Silicon Valley across education, go-to-market enablement, and IT, she holds a BA in Political Economy from UC Berkeley and is fluent in Mandarin and Cantonese.

Wendy lives in the San Francisco Bay Area with her spouse, two children, and rescue dog.

Mandy has lived in fear of her own blood, concerned about the risk of transmitting the Hepatitis C virus to her loved ones, sexual partners, and community. Experiencing stigma and both direct and indirect discrimination in a small country town in regional Victoria, she internalized a narrative that she was dirty, contagious, and unworthy of living a rich and meaningful life beyond viral hepatitis.

Mandy contracted Hepatitis C in her youth as an intravenous drug user and lived with the virus for 30 years before successfully accessing treatment for genotype 1, which involved a year of triple therapy that cleared the virus at the age of 50. The Country Awareness Network (CAN) and its association with Hepatitis Victoria provided her with emotional support and current information about Hepatitis C treatment outcomes, enabling her to rewrite her story and reframe her self-perception positively, which empowered her to make informed decisions about her treatment.

Volunteering with CAN for over 16 years, Mandy also began volunteering with Hepatitis Victoria around the same time as a community advocate. She is now recognized as a LiverWELL Hep Hero, a Lived Experience Speaker, and a member of the Lived Experience Advisory Board. Currently, she works as a Lived Experience Worker in Bendigo Health’s Dual Diagnosis Residential Rehabilitation Unit, where she represents her peers—whom she refers to as her courageous and resilient consumers. Mandy voices the personal and systemic barriers they face in accessing services and shares insights on what works and other possibilities for enhancing health and wellness outcomes for those living with or at risk of viral hepatitis and liver disease.

Residing in Bendigo, Central Victoria, Mandy defied the prognosis of dying at 40 when she was first diagnosed. She feels privileged to be a proud lived experience voice that LiverWELL listens to in discussions aimed at improving programs and services. Mandy is passionate about ensuring that empowering information reaches individuals and communities in regional and rural Victoria, helping to reduce the impact of liver disease and viral hepatitis.

She firmly believes that stigma can be combatted and that liver health outcomes can be enhanced. Mandy has witnessed positive changes, with AOD, mental health, and health workers becoming more open to respectful conversations about liver health, viral hepatitis, and the rights of those living with these conditions. They seek the knowledge and resources necessary to support their service users in living well. Together with LiverWELL, Mandy is committed to making these improvements a reality.