By: Brooke Willis, Case Western Reserve University/AIDS Clinical Trials Unit, Cleveland, OH, USA
Hello! I'm Brooke Willis with the CWRU AIDS Clinical Trials Unit and I'm talking with my friend Robin, who's a study volunteer.
Robin: Hi! Glad to be here!
BW: I wanted to talk with you about your experiences volunteering for clinical trials, and how that has gone for you and how satisfied you are with the process. Tell us a little about your background.
Robin: Well, it's been about 6 or 7 years since I heard about the studies. The way I first heard about it, I think was on Craigslist or an employment ad. I did one study that wasn't working so it was stopped, and I learned I got the placebo. Then I heard about the next study from you and this one has been going a lot better. Honestly, the second study feels safer than the first one. The thing about the first one that was troublesome to me was the idea that there were synthetic pieces copied from HIV in the injections, and even though it was safe, it sounds so scary. I didn't tell anybody about it, because I didn't want people to be, like, "What are you doing?" But the experiences at the clinic have been fantastic. The doctors are all very good and the nurses have always been very interested in me and nice and wanting to know how I'm doing.
BW: So, tell us more about your experience in terms of being treated with respect and courtesy, especially as a trans person. How do you feel about the cultural competency of the staff - the doctors, the nurses, even the receptionist? How do you feel about that whole experience?
Robin: The whole experience has been excellent. Everyone referred to me with the correct gender and were interested about what I was going through but didn't pry. There was one receptionist who said something inappropriate once, but I mentioned it to my nurse and she said something to her and it's never been an issue since, so out of everyone in the building there was just that one instance, which is a really good track record.
BW: That's great to hear that because we certainly know that trans people in general are not treated very well by the broader community. We like to think that we're doing a good job but we want to check in with folks and make sure that's true. So, is this something that you feel you would recommend to family and friends and colleagues?
Robin: Yeah, I actually have, to people I know, saying hey, you could try this. But you're always careful with a study, because you never know how people will react, so I'm not vocal about it. Even though I'm not embarrassed to be in a study, I don't know how that person would react, so I usually keep it to myself.
BW: Do your family and friends know that you're participating?
Robin: No, I don't really put that information out there, especially if they don't need to know. But I remember being at a dinner once and people brought up PrEP and things, and I told them about what HIV research is being done right now, so people know what other avenues were being explored. I was happy to be able to share that information with people. And just from being in this study I learned a ton about PrEP and have been able to tell people about PrEP, which is a nice benefit to be able to spread that information around, because if you're not in a high-risk community, you just don't know about it.
BW: So just by interacting with the nurses and doctors, you feel more medically competent about prevention.
Robin: I do; I learned a lot about HIV. You get to learn about the ignorant ways that people still view HIV. I learned some of the science of what the studies are attempting to do, blocking the ways that HIV attaches to immune cells.
BW: Have you met other folks in the clinic who are transgender? Do you know if there are other transgender participants?
Robin: I don't know that there are. I've never seen anyone, and it's not something I would ask the nurses. But I think it's important for a trans person to be in the study, because so many become homeless and turn to sex work. If that were to be their choice, if you could decrease the danger of them getting HIV (by safer sex counseling with clinic staff), then that would be fantastic.
BW: What else do you think is important about enrolling both the broader community and the way we've been reaching out to the transgender community? Why is that important that everybody is included and involved in these clinical trials?
Robin: For one, it feels good to be included in things in general, to see that you're thought of, not forgotten about, so that part is great. And then, a trans person is going to come across with different aspects of life than a gay or lesbian or straight person does, so getting all these people in a study, you get a better study, really, because you have a broader sample of everybody, so I think that's important.
BW: Well, Robin, we are very grateful for your participation, and we do want people to know that we're always enrolling transgender people for our studies, with some exclusions depending on the study. We're trying to be very welcoming of the entire LGBTQ community in our studies and we hope that you will consider volunteering in the future if you are eligible. Thanks again, Robin!
Robin: One more thing: When I first started to go and do the study, honestly I needed money, but as I learned about what it was we were doing, it became a thing where I felt like I was doing something good, where the money wasn't important after a while. I was like, wow, we're actually changing people's lives. It was like that shift, I think, where everything there felt so valid and important, so that's been nice, too.
BW: People have different reasons, different motivations to join a study, and it doesn't really matter to us whether it's the money, the medicine, or altruism and wanting to advance the cause of ending HIV. We just are so grateful for your volunteering, so thank you very much, Robin.
Brooke Willis is the Community Educator/Recruiter for the Case Western Reserve University CRS in Cleveland, Ohio.