1. Treatment Interruptions in HIV Cure-Related Research in the United States: Perceptions, Motivations and Ethical Considerations from Potential HIV-Positive Volunteers
David Evans, Jeff Taylor, Laurie Sylla, Samuel Garner, Bryan Weiner, Asheley Skinner, Sandra Greene, Stuart Rennie, Karine Dubé
No Conflicts

2. Study Design: Cross-sectional online survey | 9/15 – 10/15
400 U.S. HIV+ (22% female; 77% male; <1% transgender)
12 key informant interviews (Researchers & PLWHIV) | 10 focus groups w/ >60 PLWHIV

3. Themes, Concerns & Recommendations

4. Themes, Concerns & Recommendations

5. Voices of People living with HIV
Is cure enough better than current standard of care in some countries?:
“It doesn’t really matter if they find an HIV cure…I’m glad they have a medication that will prolong our lives, I’m very satisfied with that…at one time in my life [finding a cure] did, but after 28 years of living with it and uh it doesn’t really matter now as long as um I’ve more of the drugs come and I’m satisfying about that ”

6. Voices of People living with HIV
Risk of transmission during treatment interruption: “There’s got to be a small percentage whatever that is but there’s risk and the fact that you’ve passed that on to somebody else is not something I want to live with, especially somebody you care about so I guess that’s where I stand if the possibility even were there to even drop that even to a smaller percentage I mean then that might be it would be an incentive for me you know to to be on it or to be part of the study or whatever.”

7. Voices of People living with HIV
Language matters!
“My mom had the breast cancer and it went from her breast to her liver to her brain you know and it she went into remission there for a while and then when it came back it just came with a vengeance and but…I have to really know a lot about this in order to make a proper decision because I don’t want to go off of [ART] and then have it come back even worse you know I would need to have a lot of a lot knowledge to make such a decision.”

8. Voices from People living with HIV
Altruism is real and common:
“I would be more than willing to go the extra mile – I would - not just for the money. It would be for the research…[I would participate, because] not having to change meds again and be of service to mankind because I mean this disease is not a joke.”

9. Acknowledgements
Study participants UNC: Karine Dubé Samuel Garner Bryan Weiner Asheley Skinner Sandra Greene Stuart Rennie,
Martin Delaney Collaboratory Community Advisory Board (CAB) Members
Jeff Taylor
Laurie Sylla