A Conversation with a Vaccine Clinical Trial Participant
Almost since the discovery of HIV, the virus that causes AIDS, scientists have been hard at work trying to find a vaccine to prevent HIV infection. After all, vaccines have proven to be a vital part of public health by preventing infectious diseases from smallpox to influenza and have saved hundreds of millions of lives since the 18th century (History of Vaccines, 2014). As we commemorate HIV Vaccine Awareness Day, the conversation must include thanking the more than 30,000 HIV vaccine trial participants worldwide (HIV Vaccine Trials Network, 2013). If researchers are to develop a globally effective HIV vaccine one day, their efforts will have to include a diverse group of study volunteers, advocates, and community advisors. NHCOA recently had the opportunity to sit down with Augusto Paredes, BSN, RN about his experiences as a vaccine trial participant.
Augusto is the Nurse Manager at the Georgetown Hospital Division of Infectious Diseases and Travel Medicine in Washington, DC and has worked in HIV prevention and education in the Latino community for years. He attributes his experiences in community outreach and advocacy to his motivation to participate in clinical trials at the National Institutes of Health in Bethesda, MD.
What made you decide to participate in a clinical trial?
I was mostly driven by my involvement in the HIV field. I’ve always wanted to do more for the medical field in general and participating in research seemed like a good way to do it. I was originally recruited by Marco Zurita [colleague and long-time community liaison for National Institute of Allergy and Infectious Disease (NIAID) through the PACT Program] for an HIV study looking at different tissues of HIV negative people to see why anal sex was riskier than oral sex [in terms of possible HIV infection]. The funds that [Marco] had allowed him to provide me transportation – he made things pretty easy, he took care of me as a volunteer. He made sure I was being taken care of everywhere from phlebotomy to getting me to the Clinical Center at NIH. All I had to do was call him and he made things happen. I ended up not participating in that study, but they kept my information and when a vaccine study came up, they contacted me and I went in to find out more.
What was process like for you becoming a research participant?
The first visit for the screening you meet with the nurse and they explain to you the risks, the benefits, they’re pretty thorough, spending 15-20 minutes explaining the study to you. I did some blood work, got instructions about what procedures would be done including EKG and HIV test. When I got a call back [about the HIV study], at first I thought it was a positive HIV result, but thankfully it was just an abnormal EKG. They asked if I wanted to have my blood used for a different study and I said yes, so they ended up paying me for that – compensation they call it over there [at NIH]. At the time I was going to college and I kind of needed the money (laugh). With the vaccine study, it was pretty much the same thing – I met with the nurse, they told me all about the study, and we did some blood work to see if I was eligible to participate. That one I did end up enrolling in and participating all the way through.
Recently, I got a letter about the article that they published with the data. I was very excited to see that update; I was contributing a little to medical research. Without medical research, we wouldn’t have cures for cancers or HIV medications or all these great things that are keeping people alive. Vaccines themselves are such a great tool for disease prevention and being part of such an important thing was just great; it felt good.
“Vaccines themselves are such a great tool for disease prevention and being part of such an important thing was just great; it felt good.”
What did your friends and family think of you participating in a clinical trial?
They were kind of afraid, especially when they heard I was going to be receiving an actual vaccine. They were like, “Why are you doing that??” I was fine; I never had any doubts like I wasn’t concerned about getting a disease from it. I never really thought too much about it, like I wasn’t thinking, ‘Oh my God, they’re putting an experimental product in my body.” The vaccine [in the study] had already been through many trials. The safety had already been proven; they were just [adjusting the dosage]. I knew that the vaccine had already been studied and it was safe to be injected into humans, so it was fine. I felt good about it.
What would you say to anyone concerned about a loved one participating in a clinical trial?
Honestly, I would tell them to take it easy. When people hear the term ‘research’ and they know you’re getting some kind of medication or [researchers] are injecting something into your body, they’ll ask, “Why are you doing that?!” and my response is, “Why are you asking questions without getting educated on the subject?” If someone is asking valid questions, I’ll absolutely answer them but if someone just [has a gut reaction of] “Don’t do this!” I’ll ask them how they can be against something they have so little information about.
I dismissed a lot of people’s concerns, but with my mother, she was more worried and I was more patient with her. She worried about her son getting an experimental product. I explained the whole study to her, what it was about, and reinforced to her over and over again that I wasn’t going to get sick. She trusts me and knows I wouldn’t get myself into something that would potentially hurt me.
What advice would you give someone considering volunteering for a research study but might be concerned about what family might say?
Well, first, definitely do it [participate]. I think education is the best tool anything really, not just this but anything. Know what kind of research you’re going into because there are lots of different kinds of trials and there are some studies where you’re getting medications that could potentially hurt you. For example, I have a patient [at Georgetown Hospital] that has been battling cancer for many years and he’s getting some experimental drugs because they’ve tried everything else and nothing is working. We don’t know whether he’s going to be okay or not. Usually healthy volunteer studies are not going to hurt [participants]. A lot of people are skeptical of the government and they don’t trust research institutions and things like that. I do and I think we need to put a little bit more trust in our medical professionals. I feel like in the Latino community especially there’s a lot of skepticism with the medical field in general and we just need to put a little bit more trust. I feel like that comes with education, and not just going online and googling everything but having discussions with not only physicians but also, especially in immigrant families in the United States, it also means having younger generations talk to older adults about what they’ve learned.
The views and opinions expressed on this blog post are soley those of the person interviewed. These views and opinions do not necessarily represent those of the National Hispanic Council on Aging, its staff, and/or any/all contributors to this site.