It’s almost 40 years since the first cases of HIV were discovered. Today around 30,000 Australians are living with the virus. With antiretroviral treatments and proper care HIV is, today, a lifelong condition that can be managed – but not cured.
Over the past four decades there have been endless media reports suggesting that the latest study might be the breakthrough that people are waiting for, but descriptions of the possibility of a cure are often overly optimistic and can be frustrating for people living with the virus.
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.
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. For people living with HIV 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.
Dr Power spoke to Leigh Andrew Hill on this week’s edition of All Things Queer on RTRFM 92.1 and was quick to highlight that a cure is still nowhere on the horizon, but her work investigated what people considered to be a cure and how it would ultimately change their lives.
“There has been a kind of resurgence in the past few years in research towards a cure for HIV, and I’ll say really clearly – there’s no imminent cure. This is really early stage research looking at what some potential strategies towards a cure.” Dr Power said.
“There’s an increasing amount of clinical trials in that space which are going to involve people living with HIV, and there’s a certain element of risk in those trials for people Living With HIV.” Dr Power said explaining that people living with the virus often need to stop taking their current medication to test new treatment regimes, a move that sometimes puts their own health at risk, while they themselves are unlikely to see the benefit of the research they are taking part in, given the slow progress towards a cure.
Dr Power said the study had shown that while people welcomed developments that put the virus in remissions and made it undetectable in the body, most people with the virus considered a cure to be the complete elimination of HIV from the body.
Reading media reports about potential cures is something that clearly has a negative effect on the mental health of people living with HIV.
“The whole promotion of a cure, even taking about cure research is really fraught because of that history.” Dr Power said, “For many years there were all these false media reports or potential talk of a cure that never eventuated, and it took quite a while before we realised that it was not going to eventuate, it’s a far more complex virus that people first realised.”
That’s a real roller-coaster for a lot of people, and people if you’re living in hope for a cure that really disrupt every day life, and getting on with living from life. That’s something we really hard from people in this study. People really disengaged from reading anything about a cure, in the media or anywhere, because it really detracted from everyday life, it does have an effect on mental health.”
Dr Power said the study also showed there is still a lot of stigma around what it means to live with HIV today, and that the “Undetectable means Transmissible” message was not one that had got through to the majority of society.
“I think HIV is still very much caught up in that fear from the 1980s.” Dr Power said, explaining that the stigma has negative consequences for future research.
For people living with HIV who wanted to take part in research they would most likely have to go off their current medication, and return to having a detectable viral load. While doctors can closely monitor a participants physical health, they patient also has to deal with the mental health burden of potential discrimination and negative reactions.
Read more about the study at LaTrobe University
All Things Queer airs every 11:00am Wednesday on RTRFM 92.1 in Perth and 7:00am Sunday on JOYFM 94.9 in Melbourne. Team members at OUTinPerth volunteer at RTRFM.
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