West Australians with HIV are living longer thanks to modern antiviral drugs but stigma and fear are still alive and well, according to a landmark Perth study.
Thirty years after the AIDS epidemic began, Murdoch University researchers have looked for the first time at the health and quality of life of the estimated 1270 West Australians living with AIDS or HIV, as part of a broader international study.
While many of the 102 people interviewed were doing well on improved antiviral treatments, researchers found that much of that benefit was being undone by long-standing psychological issues linked to perceived stigma.
Some had not disclosed their condition to family and friends, with one describing their biggest fear as the day their children eventually found out. They reported withdrawing from situations that could lead to the spilling of blood such as contact sports, avoiding cooking for others, and being fearful of having a car accident in case they had to tell emergency workers of their condition.
Many struggled with romantic relationships because they were worried about their partners rejecting them or fearing they would be infected, despite using safer sex practices.
Dr Susan Herrmann, from the university's Institute for Immunology and Infectious Diseases, said more than two-thirds of those interviewed during the study at Royal Perth Hospital admitted to fear and anxiety related to social stigma surrounding the disease.
She was surprised how much many people had a strong fear of infecting others, which bordered on a phobia, with their perception of the risk much higher than the actual risk.The findings have been published in the journal Health and Quality of Life Outcomes.