The views of people living with HIV and medical researchers about what makes an HIV cure desirable may be very different, and need to be taken into account as the field of HIV cure research moves forward, Fred Verdult warned the Towards an HIV Cure symposium prior to the 19thInternational AIDS Conference (AIDS 2012) in Washington DC.
Fred Verdult’s presentation, described as the highlight of the symposium by co-chair Dr Steven Deeks of the University of California San Francisco, explored the attitudes of people living with HIV in the Netherlands towards undesirable features of living with HIV infection and the most desirable aspects of an HIV cure.
The research was carried out after a surge of interest in HIV cure research followed the media publicity given to the case of the 'Berlin patient', Timothy Brown, who was pronounced cured of HIV infection in 2010 after a gruelling course of chemotherapy, immunosuppressive treatment and a bone marrow transplant from a donor with a rare genetic resistance to HIV infection. (See here for a full explanation of this case.)
The quantitative study recruited 458 people through an existing research panel of people living with HIV and through publicity for the survey. The vast majority were in good health; only 14% reported that their health was poor.
Rather than looking solely at the question of a cure, the research also examined motivations for accepting what might be difficult curative treatment, by asking people what they considered to be the biggest disadvantages of living with HIV.
Uncertainty about future health was ranked the biggest disadvantage; fear of infecting others and the stigma of HIV infection were also ranked highly. Other health factors such as reduced life expectancy, the risk of drug side-effects and daily use of medications were less highly ranked.
Seventy-two per cent of respondents said that they thought it was very important to be cured of HIV. Yet, when asked about four different cure scenarios, respondents found scenarios that contained progressively greater degrees of uncertainty and risk of transmission to others less and less desirable.
While 95% considered a complete cure, with no risk of future transmission or future infection, to be very desirable, a cure with no risk of future transmission which nevertheless carried a risk of future infection was considered desirable by only 41% of respondents. Scenarios that involved less-than-complete eradication proved even less desirable. Only 14% of respondents considered a curative treatment that involved regular check-ups to determine if the virus had been eradicated to be a desirable treatment.
Fred Verdult, an HIV educator and gay man living with HIV, said that for people living with HIV, psychosocial factors are enormously important in framing attitudes towards the prospect of an HIV cure, and future research efforts need to take these into account. As part of the International AIDS Society’s cure initiative, Verdult is working with social science researchers to design a multinational study that will seek to examine whether there are differences between populations and regions of the world in attitudes towards an HIV cure.