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

2. Timothy Brown and Matt Sharp

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

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

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

6. 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

7. Desirability of possible HIV cure outcomes1 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%).

8. 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)

9. What type of cure research?
sterilizing
remission

10. 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

11. 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%).

12. 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

13. 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

14. 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