The HIV Generation Gap: Enlarging the Room for Young Black Voices While Keeping Everyone in the Conversation

George M. Johnson
George M. Johnson
Tyson Evans

Last fall I attended the United States Conference on AIDS in Florida to check in on new trends in the world of HIV prevention. In addition to the beautiful weather, the conference made a notable shift in the normal narrative and placed a heavy focus on the intersection of HIV and racial disparities through a Black Lives Matter lens. I was excited that, for the first time in a long time, a national conference really got into where the epidemic currently resides and what steps are need to end those disparities.

During the Black Gay Men's Affinity session I became aware of a generational gap among HIV activists, leaders, advocates and workers, as we talked about what it looks like to support one another in this fight against the epidemic. In one room, there were over 30 years of HIV-positive and negative men, telling their stories and, at times, releasing tension as we talked through many of the issues we face when we watch the torch being passed from one generation to the next.

The epidemic of the '80s and '90s is in no way like the epidemic of the 2000s. During those initial years of the epidemic, our community was decimated by the onslaught of the virus. The death sentence that was HIV had been the catalyst for the start of the movement and the creation of black-led organizations to fight for funding in the hardest hit communities.

Those soldiers who led the fight for many of those years dreamed of a day when people would no longer die of the virus. They buried their friends and loved ones along the way while doing everything within their power to continue to stay alive themselves. As they spoke, I was moved by not only their words but also their experiences. As a person living with HIV, I could never imagine growing up in a climate where, as one person described it, "We were burying a friend every week."

From what I heard, they'd taken on a "survivor" mentality and became the guinea pigs, so to speak, for different methods of treatment as researchers struggled to find a cure. From holistic health models to AZT, they journeyed through the various stages of the epidemic, hoping to see a day when people were dying "with" HIV, not due to complications from it. Interestingly enough, they said that, now that they have survived, they have been left out of much of the discussion around the current climate of HIV.

I live as a 30 year old in the current state of HIV that has become the model known as "treatment as prevention." Many others and I have taken the torch from our patriarchs in the epidemic as a new generation of young black gay men who both survive and thrive as HIV-positive individuals. Many of us in that room are treatment adherent, undetectable and work as activists and advocates to ensure that members of our communities are not becoming infected. And if they are, we work to ensure that they are linked into care and treatment with the hopes of attaining an undetectable status.

As someone living with the virus today, I don't have a fear of "dying" from it. My generation lives in the age of the "chronic condition" and has been provided resources and education to afford us the opportunity to be more than our status. There is still much stigma, shame and criminalization, but I must say it is in no way comparable with what the older generation in the room described of the '80s and '90s. As the epidemic has shifted to affecting more and more black gay men ages 18-29 -- with the CDC stating that if trends persist about one in two will contract the virus in their lifetime -- funding and focus have shifted too.

I myself have not done a great job of understanding the services and dialogue needed by the generation before me. And as such, I am a part of the generation gap problem in current prevention and treatment models.

With the introduction of pre-exposure prophylaxis (PrEP), we are now becoming the "one pill a day" generation that was once hoped for, but forgetting about the generation that fought so hard for us to have this opportunity. As we continue to fight against the epidemic, hearing those stories and seeing the faces of the men I have long admired helped me to understand: In this fight, it is for the totality of black gay men affected by HIV that we must fight, not just for those directly in the "epidemic level" numbers. I left that room with new understanding, not only about me, but also about the importance having all voices in the room when decisions around black gay man and HIV are being discussed. If not, 30 years from now, I too could be in the position of feeling left out of a discussion among people I fought so hard to get into the room.