Professor, Centre of Social Research in Health, University of NSW
“I am a Hep Hero because everyone deserves to be treated with respect and receive the care that they need.”
I have been working as a researcher in hepatitis since 2001. My research aims to understand the social perspectives of hepatitis – about preventing hepatitis, about living with it and about how to best provide support, care and treatment. I am a member of a number of advisory committees to community groups, health services and to government.
This is the best job I have ever had. I am so inspired working in this field. Every day I meet people living with hepatitis, I meet with health providers and policy makers. Every day I can see how research can help and where there is still more work to do.
I didn’t know much about hepatitis before I started this work. I have learnt an incredible amount, especially from people who have been brave enough to share their stories. You cannot help but be moved by accounts of woeful treatment when people disclose their hepatitis status.
Aside from my professional involvement, my family has been touched by hepatitis. A relative is one of those people for whom hepatitis C treatment was not successful. He died in 2006 at age 61 as a result of hepatitis C-related liver cancer.
He was a very private person and did not tell anyone in the family that he had hepatitis. We found out that he had hepatitis C only when his death certificate was released. He went through 12 months of treatment without any support from our family. We could see him becoming frail and unwell but he would not say what was happening.
Although I was already working in the field, when I realised what was happening in my family, it has strengthened my motivation to work to ensure that we can speak about hepatitis in the same way that we can talk about other health conditions – honestly, openly and with compassion for those living with chronic illness.
Stigma and discrimination contribute unnecessary pain to individuals and add to the social and economic costs of hepatitis. Beyond that, discrimination on the basis of hepatitis is illegal in some jurisdictions. There is no reason for stigma and discrimination, especially in health care.
Carla’s message to others:
“Imagine that it was your sister, your father or your friend who was so afraid of negative judgment that they avoided all health care until it was too late. We cannot tolerate it for our family and friends. We cannot tolerate it for anyone. Be a part of the change.”