Around 30,000 Australians are currently living with human Immunodeficiency virus, or HIV. It is a virus that damages the immune system and depletes T cells, making it harder for the body to fight off infection and disease. With antiretroviral treatments and proper care HIV is, today, a lifelong condition that can be managed – but not cured.
Dr Jennifer Power, a Senior Research Fellow at the Australian Research Centre in Sex, Health and Society, has led a new study that explores what people living with HIV think about cure research, and the impact a cure would have on their everyday lives.
“Worldwide, there are over 100 early-stage clinical human trials searching for a cure,” says Power. “Clinical trials pose health risks to participants and have uncertain outcomes at a time when existing HIV treatment allows people to live long, healthy lives.”
“We have a limited understanding of how people living with HIV feel about efforts to find a cure, so we conducted in-depth interviews with 20 people to explore the issue.”
The study, published in PLOS ONE, found that all participants interpreted a cure as being ‘HIV-free,’ “or the complete elimination of HIV from the body,” explains Power. “Sustained viral suppression or remission was not considered to be a cure for HIV. Rather, a cure was something that offered certainty that HIV would not return, that viral load would not rebound, and there was no chance of transmission.”
Reflecting on a cure led participants to think about the social and psychological benefits of a HIV-free existence. “Not surprisingly, health was a central theme,” says Power, “where a cure offered freedom from anxiety about future ill health.”
“For many people living with HIV there is always a fear about becoming unwell. They may get a cold or a rash and think, ‘Is this going to set the virus off again?’ ‘Is this a sign I am getting AIDS?’ So, a cure would mean living without that fear.”
There were also benefits beyond health, including an absence of everyday worry. “People living with HIV often experience anxiety around everyday things, like disclosure if they go to a new dentist or a new doctor,” Power explains. “Worry is always in the background. It is a constant awareness that impacts upon relationships and social interactions.”
Relief from the burden of stigma was also a factor, says Power. “Due to stigma, many participants felt responsible for contracting HIV,” she says. “They talked about feeling tainted by shame, and about their reluctance to tell family and friends. A cure would alleviate them of the stigma that comes with being seen by others as ‘infectious’.”
Despite the potential risks, most participants said they would consider involvement in HIV cure research. “The people we interviewed saw it as an opportunity to contribute to science, help future generations, and gain a positive experience from their HIV diagnosis,” explains Power.
“Our study highlights the benefits of consulting people with lived experience of HIV in the design of HIV cure clinical trials,” she adds. “We are now working with an international team to deliver a project that educates researchers about effective strategies for enhancing meaningful involvement of people living with HIV in cure research. We are also working with the Doherty Institute to support community participation in HIV cure research.”