What’s it Like to be in an HIV Vaccine Trial?

What’s it Like to be in an HIV Vaccine Trial?

Interview with an HIV Vaccine Trial Participant

Chris is a participant in an HIV vaccine trial. He spoke with David Nalos (Bridge HIV) about his experiences with HIV, his experiences with the trial, and why he chose to participate.

How are you Chris?

Chris: I’m doing very very well, thank you.

David: So let’s talk HIV. Now, HIV, as you know, has been around for almost 30 years now and for almost as long we’ve been trying to find a vaccine to end the epidemic. So tell me why did you decide to join the trial and why now. Why is now the right time?

Chris: You know, like five, six years ago, I didn’t have any connection to the disease really. Now it’s completely in my community, it’s engrained and, it’s in my personal life, and in relationships, and in friends and I mean I had a friend pass away on Friday from the disease …

David: Wow

Chris: …and my last relationship was a magnet relationship, you know, I was negative and he was positive and that’s why it was a big proponent for me to be a part of the study. What really resonated was that it was time, I had the sense of feeling that it was just … it was time. I mean when you’re 20 and you’re kind of figuring out who you are and coming out and kind of all over (laugh), it’s really not something you think about. And then like I said when everything has kind of over the last couple of years really hit home and hearing the information it was just like okay, it’s time. It’s definitely time to kind of grow up and time to give back.

David: You were talking a little bit about how it’s in your community, umm, you said it’s around you and people are talking about it. But a lot of the research talks about the complacency that a lot of the younger generation has around HIV. And you are … 20 years old?

Chris: 25

David:  25 years old. People who are in your age group, do you find that that complacency is there?

Chris: Very much so. I can recall when I was in my last relationship that he had a friend call him and tell him that he was positive. And I just remember the kind of calming down of it’s not a death sentence, it’s not the end of the world. And having a lot of friends in the older demographic who were those activists and who were those people who were extremely involved who saw people die within a very, very short amount of time; having them talk to my age group really kind of resonated with me.

But then with my friends recently, very close friends coming and finally admitting, you know, I’ve known for a year but I’m finally comfortable to talk about it, and it really being the sense of okay well I’m not gonna die tomorrow; the kind of feeling that it’s manageable. Which I would tend to agree with that it isn’t a death sentence but I think that that also can put a spin on it not having such the influence that it is a problem. It’s a disease that can take lives and does.

David:  It’s a real double-edged sword.

Chris: Completely.

David: What did you know about HIV vaccines before actually you were in an HIV vaccine trial?

Chris: Nothing. I really … I really hadn’t done a lot of research. I mean personally I was, for the last three years, caught up with school and work and internship and things and so I really didn’t get to get as involved as I would have liked to. And so one of my personal goals was as soon as I had that time, it was a goal of mine to get involved and it just so happened that within like a month of graduation I heard about the study and that’s when I contacted and really got involved and really kind of put the ball in motion, I guess.

David:  What were you expecting before you actually came in for your first visit?

Chris: That’s a good question. Honestly, I didn’t know what to expect. I think I’d played over like 8000 scenarios in my head, but that was before I really had the information that they give you because the first enrollment sessions you really are taken through Power Points and really kind of umpteenth signatures to make sure you understand everything.

So there’s never a feeling that I didn’t get an answer or I was left with a sense of uncertainty. It was always, “Do you have any questions,” you know, “Is there anything else we can explain to you,” or “Do you understand this?” So that you really feel that you’re being valued and it’s not just like, “Okay, you’re just, you know, a rat in a cage” kind of thing. It’s a very honest, personable, experience. My expectations going into it were … I don’t think I really had any. I honestly did not know what to expect because I had never participated in a study before.

And I remember when I started the study a couple people were a little bit weary towards my involvement in it. It was funny I remember having brunch with a friend and he was mentioning, he’s like, “Well it’s an HIV vaccine like the flu vaccine, like they’re gonna give it to you.” And really having to educate them on what was happening, how it was being done, what was being utilized, and the fact that you can’t, I mean it’s all synthetic. You’re not going to be injected by The Department of Public Health with HIV to see what happens. I mean it … that’s just a reality, that’s not happening. But really getting that stigma out of people’s head because they’re worried and I think the vaccine, that word, I think throws people.

Just cause you hear the word vaccine it doesn’t mean you’re getting it. It’s been engrained in people’s heads about the flu vaccine, and about, well “we’re giving you a little bit of it,” when that’s really not the case. And, I mean, when I called and talked to the people here at the Department of Public Health … that was all I needed. Feeling just completely comfortable, completely accepted, my fears were addressed, everything was kind of put to rest, so to speak, and I was made to feel really comfortable and informed of what I was doing. Any expectations just turned into this positive light so, it’s been good.

David:  So did you have that fear that everyone talks to you about about being injected with the HIV virus. Did that ever …

Chris: Yes!

David:  Yeah? Ok! (Laughs)

Chris: (Laughs) I remember sitting with Haley, sitting there and being like, “Okay, so you swear there’s like no way.” She’s like, “Okay, we’ll go through it again.” And I was like, “Alright, just so we’re on the same page.” But, yeah, I mean as much as people have become complacent with it. When you bring it up in a serious note, especially with younger people, it still can kind of hit. My first reaction when I got in was I was nervous. I had an extreme fear. I was like, “Okay, so, I’m gonna get HIV from this.”

Then I thought there’s no way that, you know, The Department of Public Health for San Francisco is really gonna be allowed to just be like, “Here you go,” nor would they even consider doing something like that. So, yeah, it was definitely a fear of mine but, like I said, those fears were definitely set aside.

David:  So what are the visits actually like?

Chris: (Laughs) It’s like therapy. Cause it’s funny cause you come in … the process, obviously, you check your physical health to make sure you’re able to be vaccinated. They have to order the vaccine, and then in that time that you have to wait for it to be delivered from the pharmacy, that’s why I tell everyone it’s like therapy.

The nurse practitioners here I … I think are phenomenal. They have a way of … they’ve been so genuine. I mean aside from being phenomenal at what they do. I mean just on a personal level, I mean, I told them I can’t thank them enough because they make you feel at home when you’re here and you really get to talk and they just have a way of bringing things out about you and getting you to just … not necessarily divulge information but they just make you feel so comfortable that you can actually talk and have an outlet to really express these things; especially when it has to do with HIV or the reasons why you’re doing the study.

So, you know, you come in here and in that time you get to kind of vent a little bit. And it’s … I mean, you know, it’s checking vitals and it’s things like that and then it becomes your responsibility in taking part after words to really kind of monitor for three or five days; kinda checking the injection site or any possible side effects or symptoms and temperature. It’s not super time intensive, I think, on our part as the participant but I think the information that’s being taken and the scientific research that’s coming out of it is immeasurable. I mean, I think it’s invaluable.

David:  Have you had any side effects?

Chris: No, which has been great … I mean my arm hurts sometimes a little bit. I mean I’d never had a Bioinjector before. I didn’t even know what it was.

David:  Can you tell people a little bit about what that is?

Chris: It’s … everyone’s like, “What is that?” Umm, so a normal vaccination obviously would come with like a needle. But it’s needle-less. It’s essentially high pressured air that punctures less than a pinhole of your skin to inject the vaccine. And it’s … it’s almost just like a weird pressure for a minute and that’s it. The only side effects that I’ve ever experienced as a part of the study was my arm was sore for like a day or two that was it.

I mean I haven’t experienced anything that would cause me to lead to concern and be like, “Okay, well maybe I shouldn’t be doing this.” But it’s been a very, a very good experience.

David: And have you told your friends, family, that you’re in this trial? And what have their reactions been?

Chris: It’s all over Facebook! (Laughs)

David:It’s… (laughs) What have their reactions been?

Chris: Umm, at first, like I said, almost everybody has been a bit weary just because of vaccines and they think, you know, really taking that time and them understanding why I’m doing it, what it’s for, has helped them I think realize that it’s … you know, aside from the scientific aspect and really what’s going on … my emotional input into the situation and being a part of the study has helped them come to terms with something they may have been a bit weary about just on the surface.

Not really knowing much about it, just hearing they’re like, “Ehhh,” you know, a little stand offish but really, I think, investing the time to take five minutes and just really explain what it’s about, why I’m doing it, why the others, you know, who are a part of the study are really involved. Cause everybody has a unique story and everyone has a unique point of view as to why they’re doing it, what it means to them.

I’m not shy about it I’ll post it on Facebook for everyone, you know, it’s the next injection, you know, and the response is phenomenal. Cause I get a lot of positive “congratulations,” “thank you for doing something.” I think sometimes a lot of people don’t feel that they can do anything. I didn’t think that I could really do anything in the beginning and then when I found out about this vaccine study I realized that I really almost effortlessly lend myself to do something about it. I mean in all honesty it’s been a very enlightening experience. It’s something I would do again if there was another opportunity down the road to participate in another study. I think it’s great.

David: How has your sexual behaviors, your sexual practices, how has all of that changed since you participated. If it has?

Chris: Very much so. I mean … I say very much so and it’s really kind of helped me come to terms with my own questions that I might have. Things that I might not have really fully understood until I got the information that you guys provide here. So it’s helped, I think, more solidify who I identify as in the community, just overall the way I choose to live my life. It’s definitely helped kind of solidify that. Just with the information and everything that’s provided it’s phenomenal.

Essentially, it’s always been about safe behavior but I think everyone, I mean, I don’t think everyone’s safe all the time as they should be. Especially with such a sex positive community, when you’re out having fun or doing what not you may not know. People may not always feel comfortable to divulge that information and really taking ownership to protect yourself and get tested and if you’re sexually active, taking responsibility and ownership of that I think is extremely important. It’s something that I’ve been very proud to have been doing and practicing for years.

I think it’s essential and I think you have one life to live, so to speak, and you really need to kind of take care of yourself and take care of those that are around you because if you are participating in a lot of sexual behavior it’s just the responsible thing to do. And it’s respectful of not only your own body but those who you choose to share it with. I think that’s really important.

David: So what would you like to tell others who might be thinking about joining?

Chris: To call. To just inquire. I would tell people who may not consider it to not assume things ‘till you really have the information. I know it’s hard. Take time, just make a phone call, it’s fifteen minutes. You can get some information and you can decide if it’s for you and if it’s not for you. I think people who are considering joining should just inquire. Just do it because you have absolutely nothing to lose.

If anything you’ll maybe even join, hopefully, and provide a vast amount of information towards this research and towards this study. Just don’t be fearful. There really isn’t anything to be afraid of. I say that now being someone in the study and someone who did have fear in the beginning. I think it’s only natural to have that fear. So I think realizing that you can acknowledge that fear and still inquire just to get more information does no one any harm. It’s just a phone call. So do it.

October 2010