ac•tiv•ism (noun):

The policy or action of using vigorous campaigning to bring about political or social change

This is the simplest definition of the word “activism,” a word I recently had gone online to define after being voted “Best Activist” by the Philadelphia LGBT community. It was very strange to me because I never saw myself as an activist or what I do as any type of activism. When I heard the word activist, I used to think more along the lines of those real life superheroes such as Martin Luther King Jr. or Harvey Milk. Examining the word further, I began to realize that each one of us, at one time or another in our lives, can define ourselves as activists.

Through my work with Philly Vax at the University of Pennsylvania’s HIV Prevention Research Division, I’ve found an extraordinary group of individuals right here in our community. Though they may not see themselves as such, be recognized publicly for it, or even speak about what they do, these individuals are the epitome of activists. Each of these men and trans women are volunteers with the nationwide HIV vaccine study “HVTN 505.” The University of Pennsylvania’s HIV Prevention Research Division one of more than 20 sites across the country working to find a safe and effective vaccine against HIV. This work has only been possible with the help of local volunteer “activists” who are doing some amazing things to bring about change in our world.

Philly Vax is currently recruiting men and trans-women, 18-50 yrs old, who are HIV negative, healthy, and available to participate for 2 years. When I first heard that there was a study underway to end HIV with a vaccine, I thought people would be lining up around the block to sign up. However, when I joined up as a recruiter, I found that this was not the case at all. I actually began to see that recruiting volunteers was difficult. Why? After many conversations with potential volunteers in my rounds of the Gayborhood, I found that various myths and misconceptions exist about HIV vaccines. I also found that the stigma of HIV/AIDS, some 30 years into the pandemic, still hasn’t changed too much. Some that I spoke with were frightened that they could get HIV from participating (YOU CANNOT) and some just were not comfortable with the issue of HIV in general. HIV is still that “dirty” little word in the LGBT community that you may not want to think about, but you know is there. I found that it takes a very special type of individual to be involved in this type of research and to give of his or her time. From this realization we use the logo “I Have a HEART On” to describe the passion of our volunteers enrolled in the study. With each individual enrolled, the “HEART” is a common theme. Why specifically did they get involved? To find out what is in the hearts of some of the volunteers I asked several that I know personally and others I met at a recent Volunteer Appreciation Dinner held in their honor to share their reasons.

Many volunteers tell me that, generally speaking, they understand that the rate of new HIV infections has not slowed. Philly has twice the new infection rate of NYC and five times the national average. These statistics are disturbing, and the volunteers agree that education and prevention alone are not enough to end this pandemic. While all participants are compensated for time and travel, money was never listed as the reason for participating. Instead, the volunteers I spoke to had deeper reasoning to share, some very moving to me. Here are just a few responses I was given:

Gary S.: “There are 3 different reasons. The first one is you, Dan, and your enthusiasm and commitment to Philly Vax. The second reason is that most of my life I have been very selfish. This is a chance to do something to help others and to give something back rather than take. And lastly for some reason I have been spared from this disease despite my actions even to this day. Many have not been so lucky! Hopefully my participating in Philly Vax will help someone down the road. There is a reason for everything that happens—maybe this is my reason.”

Keith T.: I joined because I want to find a way to keep people safe. It is exciting that it is history making but the personal reason goes a bit farther than that for me. I had a good friend die of AIDS and, after watching him go through all of the stuff, I said that when I get the chance to I will be a part of ending HIV.

Tyreef C.: I chose to participate in this study because I know that in our community, HIV/AIDS is still a dangerous problem that needs to be solved, and it can only get taken care of if people are willing to be a part of something greater than themselves. I chose to help in this study because something needs to be done about HIV, and researchers need the help from us if they are to ever find a vaccine.

As a person living with AIDS, there is nothing more touching to me than to see that in our world, there are amazing participants such as these who truly want to see HIV eradicated and nothing more than a dark page in our history books. To me there is no greater act of giving than to give of your time for the betterment of others! This group of special people is striving to make change for the good of all through their participation. For this reason I believe that all who participate in Philly Vax are surely ACTIVISTS in the greatest sense of the word. They have reached out and joined the fight to take part in what researchers are calling the MOST important vaccine study in the world. Like polio and measles, we can end HIV with a safe and effective vaccine. You, too, can be an activist by looking into this study to see if it is a fit for you! Please contact Philly Vax on their website for more information (www.phillyvax.org) or call 1-866-448-7366 or feel free to contact me directly! While our group of volunteers may never get the recognition they deserve from the outside world, I know I speak on behalf of Philly Vax’s entire staff when I say THANK YOU from the bottom of our hearts!