Biomedicine has found a cure for hepatitis C, yet combating the debilitating and potentially deadly virus that can cause liver damage and cancer will take much more than just hard science.
Despite readily available treatment and the knowledge about prevention, more than 5,000 people are newly infected in Australia every year, and some 220,000 people are living with the disease.
As the deputy director of UNSW’s Centre for Social Research in Health, Professor Carla Treloar’s research is vital to understanding why the disease continues to impose such a burden around the world.
Her cross-disciplinary approach – at the intersection of healthcare delivery and psychology – has revealed the complex social barriers that prevent many people with hepatitis C from seeking treatment.
Treloar says two words come up frequently in her research – “stigma” and “trust”. Stigma because injecting drug use is the main way hepatitis C is transmitted. And trust because many people report blatant discrimination – and the distressing breakdown of the patient/caregiver relationship – when they reveal their infection status, even within the confidential confines of the healthcare system. Consequently, many people only seek treatment long after they have acquired the virus and, potentially, have passed it on to others.
At the same time, general knowledge of the risks of hepatitis C is dangerously low. A recent study in NSW led by Treloar found young people who use, or are exposed to, injecting drugs, do not have enough knowledge of hepatitis C to protect themselves against the disease.
"Our research with older people who use drugs tells us that they often don't find out about hepatitis C until sometime after they have started to inject," she says.
Given the stigma around illicit injecting drugs, it is difficult to deliver information to young people in schools or via the media.
“Across all risk groups, prevention and treatment can only be effective with a deep understanding of affected individuals, many of whom have complex, often very disadvantaged, life histories,” says Treloar, who holds advisory roles with a range of research, government and non-government agencies, including the national Ministerial Advisory Committee for Blood Borne Viruses and Sexually Transmissible Infections, and the NSW Health Ministerial Advisory Committee on Hepatitis.
“The most rewarding aspect of my research is the partnerships I have forged with people living with hepatitis C, who lead very challenging lives, so that I can understand their circumstances and contribute to improving interventions.