Joseph Caputo learned about HIV and AIDS while in high school, when HIV and homosexuality were inextricably linked in the public consciousness.
"Coming out in high school, the only place you could learn about being gay was the library and the Internet," he said. "All the books at the library were about gay men having AIDS. So from a very young age, I thought that if I was gay, it would mean I would get sick."
Over a decade later, while the public perception had changed, Caputo felt the desire to contribute to the fight against HIV. "I was watching Angels in America and I realized I wanted to do something to get involved," he said. "I don't have money, but I could give my time and my body to research."
Caputo is one of the tens of thousands of men and women who have participated or are currently participating in HIV vaccine field studies and clinical trials worldwide. These individuals are literally the "life of a trial."
HIV-negative volunteers such as Caputo receive treatments, often over the course of many years, that scientists design to prevent HIV infection. Researchers hope that participants who are given the vaccine will contract the virus at a lower rate than control subjects, who receive a placebo treatment instead. All trial subjects are routinely tested for HIV to gather data comparing the treatment group and placebo group, and track success over time. Caputo is currently involved in a study run from Boston.
In the third part of our video blog series Preventing the Unpreventable, we spoke with Caputo and another volunteer, Benjamin Perkins, who currently works in community HIV/AIDS outreach at Fenway Health. (To learn about the scientific challenges of the HIV virus, read Part I, and to find out about today's progress toward finding a safe and effective vaccine, check out Part II).
After serving on community advisory boards, promoting the cause as an HIV/AIDS activist, and working in the field, Perkins said, "I felt like it was a natural progression to roll up my sleeves-figuratively and literally-and do my part."
For both participants, their involvement in HIV vaccine trials has allowed them to feel they are members of the tremendous community of people around the globe contributing to the collective HIV/AIDS activism and advocacy effort.
"Hopefully, the kid today, wandering about the high school library, won't have to go through some of the things that I've gone through," said Caputo.
Organizations and laboratories conducing HIV vaccine trials at various stages of vaccine development recruit volunteers historically at bars, clubs, through newspaper advertisements, and, more recently, online social spaces such dating sites and Facebook, to catch the attention of potentially interested men and women. Researchers need volunteers for every step of clinical testing-from early studies with small groups of 15 to 30 participants, to large-scale trials, which have already passed the initial rounds of testing and potentially include thousands of research participants.
Caputo currently volunteers with a small clinical trial still in early testing, with results possibly years away. However, Perkins was a participant in the second-ever clinical efficacy test to progress to a large-scale trial, the STEP Study, for over two years. The study received a lot of negative press after ending early due to concerns for participant safety, particularly discoveries of higher rates of HIV incidence in men who were uncircumcised. As a result, scientists generally agree that uncircumcised men have a higher chance of contracting viruses such as HIV, and today many vaccine studies only enroll circumcised men.
According to Dr. Mayer of Fenway Health, ultimately, there is generally low risk in participating in an HIV vaccine trial; side effects, if any, are minimal, while more serious health complications resulting from participation in the study are tremendously rare. Yet, the benefits are high. Trial participants internationally make it possible for researchers to continue progress toward a safe and effective vaccine.
The next, and final, entry will discuss the future of the HIV vaccine and how you play a role in the effort.
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Joseph Caputo is a freelance science journalist and recently published Proud to be an HIV-Vaccine Test Subject with the Good Men Project. He is also a curriculum developer for a science education company. He is currently a participant in an HIV vaccine study in Boston, MA.
Benjamin Perkins is an HIV/AIDS activist and Associate Director for Community Engagement at the Fenway Institute at Fenway Health. He was a participant in the second-ever large-scale clinical HIV vaccine trial, the STEP Study which ended early due to complications and inconclusive results.
This is Part Three in the four-part blog series Preventing the Unpreventable: The Search for the HIV Vaccine written by Devon Dickau, who interned at NOVA in the spring of 2011 before graduating from the Harvard Graduate School of Education's program in Technology, Innovation and Education.