People living with HIV can inform design of cure research: an online international survey Julie Fox

Timothy Brown and Matt Sharp

No one has asked What type of cure people want? A global survey of HIV-positive people's attitudes towards cure research HIV Med. 2017 Feb;18(2):73-79

Patient representatives NAM Saving lives NAZ THT i-BASE BHIVA Positively UK Living well 10 Clinics Patient representatives MRC HPE

SURVEY Type of cure wanted Side effects willing to put up with Study participation with no individual benefit Treatment interruption Comments…..free text

Results 982 PLHIV completed the survey 87% were male, 79% white and 81% men who have sex with men (MSM) Average age 33 years Average time since diagnosis was 7 years 80% were on HIV treatment

Desirability of possible HIV cure outcomes 1 3 x x 2 x 4 Health/wellbeing improvements (96%) and an inability to transmit HIV (90%) were more desirable than testing HIV-negative (69%) or telling people that you no longer have HIV (57%).

95% interested in participating in cure studies 59% were willing to accept substantial risks with no benefit to themselves allowing their CD4 to reach 200 cells/mm3 and/or having a detectable viral load for 6 months or more more likely to take part: had a low CD4 count <350 less likely to take part: had limited knowledge of HIV treatments, were older (>65yrs)

What type of cure research? sterilizing remission

Would you be willing to stop HIV medication for some months as part of a cure research study? 62% replied yes (Definitely or Probably) Only way to tell if a cure has worked

Concerns about stopping treatment reassure Proportion reporting being very or moderately concerned 62% would have a treatment interruption as part of a cure trial with the main concerns being becoming unwell (82%), becoming infectious (76%) and HIV spreading through the body (76%).

Comments •250 people left spontaneous feedback at the end of the survey (see handout) The importance of patient-clinician relationship in decisions about taking part in HIV cure research was shown •Altruistic reasons were the main motivator in decision-making for many potential participants, regardless of risks-benefits

Conclusions Despite very successful treatments people still want a cure for HIV Cure research was highly acceptable to PLHIV Most individuals would accept risks, including TI, even in the absence of personal benefit. An ideal cure would improve health and minimize infectiousness forever rather than just for a while

THANK YOU EVERYONE! MRC : Ruth Simmons, Kholoud Porter, Mitsy Gafos, Sheena McCormack PHE: Monica Desai, Meaghan.kall, Valerie Delpech BHIVA: Adrian palfreeman, David Asboe, Jane Anderson 10 Clinical sites: John Frater, Sarah Fidler, Martin Fisher, SabineKinloch, Mark Nelson, Laura Waters , Nneka Nwokolo, Steve Taylor 6 Community groups: Simon collins (i-base), Wadibia (naz), Michael brady (THT), Gus cairns(NAM), James Miller (Living well), Angelina Namiba (Positively UK), Steve taylor (saving lives) Patient representative: Juliet Bosa