Objectives: Involvement of people living with HIV (PLHIV) in the design of HIV cure studies is important, given the potential risks to participants. We present results of an international survey of PLHIV to define these issues and inform cure research. Methods: PLHIV were recruited in June−November 2014 through HIV websites, advocacy forums, social media and 12 UK HIV clinics. The survey included questions concerning demographics, HIV disease history, the desirability of types of cure and the patient's willingness to accept potential toxicity and treatment interruption (TI). We examined factors associated with TI and willingness to accept substantial risks. Results: A total of 982 PLHIV completed the survey; 87% were male, 79% white and 81% men who have sex with men (MSM). Fifty-one per cent were aged 25–44 years and 69% were UK residents. The median time since diagnosis was 7 years [interquartile range (IQR) 2–17 years]. Eighty-eight per cent were receiving antiretrovirals (91% reported undetectable viral load). Health/wellbeing improvements (96%) and an inability to transmit HIV (90%) were more desirable cure characteristics than testing HIV-negative (69%). Ninety-five per cent were interested in participating in cure studies, and 59% were willing to accept substantial risks. PLHIV with a low CD4 count [201–350 cells/μL vs. ≥ 350 cells/μL; odds ratio (OR) 2.11; 95% confidence interval (CI) 1.11–4.00] were more likely to accept risks, whereas those with limited knowledge of HIV treatments vs. excellent/good knowledge and those aged ≥ 65 years vs. 45–64 years were less likely to accept risks [OR 0.58 (95% CI 0.37–0.90) and OR 0.18 (95% CI 0.07–0.45), respectively]. TI was acceptable for 62% of participants, with the main concerns being becoming unwell (82%), becoming infectious (76%) and HIV spreading through the body (76%). Conclusions: Cure research was highly acceptable to the PLHIV surveyed. Most individuals would accept risks, including TI, even in the absence of personal benefit. An optimal cure would improve health and minimize onward transmission risk.
Bibliographical noteFunding Information:
We would like to thank all those who participated in the HIV cure survey. We also thank those who helped design the questionnaire, in particular patient representatives; those who were involved in recruitment; BHIVA, HIV i-Base, NAM, NAZ, THT, Positively UK, Saving Lives, Living Well and Washington University; and those at the 10 UK clinics who distributed paper versions of the survey: including Mark Nelson and Sheena Nneka (Chelsea and Westminster), Sarah Fidler (Imperial College NHS Trust), Steve Taylor (Birmingham Heartlands), Mike Brady (King's College Hospital), Jane Anderson (Barts and the London), Laura Waters (Mortimer Market Centre), Sabine Kinloche (Royal Free) and John Frater (University of Oxford).
© 2016 British HIV Association
- HIV cure
- clinical research
- patient perceptions
- treatment interruption