Table 4.
Supplemental Quotes, Perceptions of HIV Cure Research Focus Group, United States, 2016
| HIV cure definitions | “It means that procedures have been developed that would eradicate or eliminate HIV.” | Seattle, group 2 |
| “Hmmm….. To be able to give you maybe a pill or something for it to clear it up and make it disappear and no longer exist. A cure for me is also not to be able to happen ever again, if that's possible.” | Seattle, group 1 | |
| Preference for eradicating/fears of functional cure | “I don't want no one to come to tell me, “Oh, it's gone,” and next month, or a year or so, it's back twice as bad. I don't want that. Let me deal with it like I did right now, and I'm doing good; I'm 68 years old and I'm doing good.” | Los Angeles, group 1 |
| “I don't know about functional. I mean, it's just, you know, if there's still a virus in there and it does decide to just by chance come back and release itself and come back unexpectedly, then what? You know you go back on meds and maybe the meds don't work because you have the, uh, what's the word, I can't think of it, resistance of it…. The virus, the viruses can always evolve themselves into a super virus, yeah, but the eradication that would be the best, I think, definitely, you know.” | Seattle, group 2 | |
| “A functional cure won't end stigma—you would still need to disclose.” | Seattle, group 4 | |
| “A functional cure freaks me out. How long will it last? What if it activates again and I didn't know?” | Seattle, group 4 | |
| “Rather have the sterilization cure if it's permanent and free from future infections.” | Seattle, group 3 | |
| “Functional feels like a time bomb.” | Seattle, group 4 | |
| “I prefer sterilizing. Makes me less depressed—feel more positive.” | Seattle, group 3 | |
| “A functional cure freaks me out. How long will it last? What if it activates again and I didn't know?” | Seattle, group 4 | |
| “I would really like to see a functional cure; I think that will come first.” | Los Angeles, group 1 | |
| “I'm having a very hard time trying to visualize this functional…..As far as I'm concerned, I'm undetectable so I have a functional cure right now…” | Seattle, group 2 | |
| “Eradication is the best, that's the best, it is because I don't get the other, I really don't.” | Seattle, group 1 | |
| “Maybe the scientists think we're stupid, why are we even bothering with the functional thing, that's what I want to know, it's something …” | Seattle, group 1 | |
| Liberating aspects of an HIV cure | “What I think about a cure, there is so much that, like, is folded into that what would life be like if we had a cure. I mean, even the relationship choices I've made since I became positive….. I may consider that I have more opportunities, you know. Um, I mean because a lot of us selectively date, you know, because we just don't want to deal with somebody who doesn't know or doesn't understand…..” | San Diego |
| “What comes to mind where I hear cure is…..I guess getting rid of the stigma of living with it that you get from other people.” | Seattle, group 2 | |
| “And also cure means to me to get busy, because, you know, I've been living my life like, you know, I had limited time anyway, so I never really finished college and pursued the fact I'm gonna die anyways so I've heard, yeah, a cure means it's time to get busy, catch up the lost time you know.” | Durham, group 1 | |
| “I could just have that opportunity to just have a normal life again.” | San Diego | |
| “What I think about being cured… is my God gave me another chance to right what I did wrong.” | Los Angeles, group 1 | |
| “…be able to travel the world, you know. I want to travel and do things and live places where there's not medication.” | San Diego | |
| “It's hmmmm, it's like to me, if they find a cure, it'll make the world a whole lot better and it would make the…it would make people feel better about themselves. It's not just two separate classes. People with not HIV and people with HIV. You know, it's just… it'll make it all… it will just make us all one. You know. We won't have two separate classes.” | Durham, group 1 | |
| “Well I'm excited you know, I'm just excited that we're even talking about this you know.” | Los Angeles, group 2 | |
| Feelings about an HIV cure | “It's kind of bittersweet too. I don't feel so secure in the idea of a cure, just because it is scary, it's so unknown.” | Los Angeles, group 1 |
| “Um, uh, I personally, um, it doesn't really matter if they find an HIV cure, but I'm glad they have a medication that will prolong our lives; I'm very satisfied with that.” | Durham, group 2 | |
| “For me the sterilizing thing, and only because I sat in a talk and I've met Tim. It's frightening as shit, because it's a very rad. I mean stem cell transplant is a real radical thing that to cure your HIV you're basically like going to the edge of death…” | Los Angeles, group 1 | |
| “Well I'm going to hope for it because in the six years that I've been infected I've seen like massive amounts of breakthroughs already, so I think it will happen within my lifetime.” | Los Angeles, group 2 | |
| “Maybe when I'm 90, for my grandkids. Probably not in my lifetime.” | Seattle, group 1 | |
| “Not going to happen.” | Los Angeles, group 2 | |
| “Well I'm excited you know, I'm just excited that we're even talking about this you know.” | Los Angeles, group 2 | |
| “When I hear the word HIV cure, thankful and grateful.” | Durham, group 1 | |
| Language | “I don't like the word sterilizing.” | Durham, group 2 |
| “….. and then I started thinking about cancer and remission, you know, and then, cause my mom, she had cancer, and she had remission, and then it came back, and then she die, you know. So, you know, that's in that state is saying that in remission it's still there but it could also come back you know so I tell you know, like my friends with cancer, I have a lot of friends with cancer and they, um, they go into remission and then it comes back, Stage 4 cancer, and then they're gone, you know. So that's a good word, but it's not a cure, you know, because I would want a cure for real, you know, ‘cause right now I am in remission and I'm doing fine. I'm, I really want a cure, so I'm having to think in the back of my brain, is this gonna come back? You know I want to be able to be free, I ain't going to be out there trying to get it again, but I just want to I want to be free of it, 100 percent.” | Seattle, group 2 |