People living with HIV have a great interest in taking part in studies towards an HIV cure, with many people aware of the risks involved and the fact that they would be unlikely to benefit personally from cure research.
These are the results of an online survey conducted last year. Many readers of HIV Update were among the 982 people who took part.
This was a self-selecting sample, but nonetheless the 95% of respondents who would participate in a cure study suggests an enthusiasm for future research.
As might be expected, interest in a ‘sterilising’ cure was very strong. Over 90% of respondents said that it was very desirable that a future cure would mean that “you no longer have HIV in your body”.
But researchers are more hopeful about the possibility of developing a ‘functional’ cure, in other words one which does not eradicate the virus but which would allow someone a prolonged period with neither daily treatment nor disease progression. Over 90% of respondents were also interested in outcomes that could be associated with a functional cure: there being no risk of HIV-related health problems and no risk of passing HIV on during sex.
For example one person said:
“I would love to be able to stop taking the drugs and remain well with HIV infection under control (not necessarily HIV-free). After 15 years I may say that I am quite tired taking drugs every day.”
Some people suggested that if the risk of HIV transmission was gone, a cure would have a social and psychological impact, as well as a medical benefit.
Many people suggested altruistic reasons for taking part in cure research, for example:
“I would happily take part in a cure study if it would benefit others. Knowing that my life would have had some purpose is worth the possible side-effects.”
Many people said they’d be willing to take risks with their own HIV treatment – including stopping it for a period – in order to take part in a cure study. But most also said