HIV positive people’s attitudes to cure

A recent survey found a high level of willingness among people living with HIV to participate in HIV cure trials, even when participation may involve health risks, side-effects or treatment interruption.

The survey included 982 participants, mainly from the UK and USA.

Researchers were interested in survey participants’ perceptions of what an optimal ‘cure’ for HIV would look like. The most desirable scenarios were “no risk of HIV-related health problems”, “no longer having HIV in your body” and “no risk of passing HIV to sexual partners”.

Interestingly, responses differed depending on how long people had been living with HIV. Those who had been diagnosed in the previous two years were more likely to cite social and emotional outcomes as most desirable. This included “telling people you do not have HIV” and “no longer having to feel bad or worry because you have HIV”. Those who had been living with HIV for longer were more likely to focus on improved health outcomes.

Overall, 59% indicated they were willing to accept substantial risks to participate in a HIV cure trial. “Substantial risks” were defined as severe/moderate side effects without personal benefit and/or a detectable viral load and/or increased CD 4 count as a result of participating in the trial.

People were more likely to be willing to accept these risks if they already had a low CD4 count or detectable viral load. US respondents also appeared to be more willing than UK residents.

People were less likely to accept these risks if they were older, had a more recent diagnosis, had lower knowledge of HIV and HIV treatment, or if their CD4 count had never dropped below 350 ml per cells/mm³.

Overall the results of this study suggest that there is likely to be substantial interest among people living with HIV to participate in cure research, even if the studies may involve some health risks and limited personal benefit.

It is unknown whether this would be the case among Australian people living with HIV. Access to high quality healthcare in Australia may make people more reluctant to potentially compromise their health. This could also, in part, explain the difference between the UK and USA participants.

The HIV Futures 8 survey is currently collecting similar data in Australia. Responses to HIV Futures 8 should provide an indication of the ways in which people living with HIV in Australia perceive, or desire, a cure for HIV along with factors associated with willingness to participate in HIV cure trials. HIV Futures 8 is open for participation until mid-July: www.hivfutures.org.au. More details can be found here.