39 Years of HIV, and the Audacity of Our Survival Endures

June 5, 1981, marks the first official report of HIV. We’ve lived through 39 years of this global pandemic. Our communities were devastated, millions died, and while there have been great advancements in treatment and prevention, there is still no vaccine or cure. Now we find ourselves in the midst of a second global pandemic, and our communities are roiled by the ongoing struggle against racism and for justice. In this new world in which we find ourselves, the basic principle of survival still profoundly resonates.

This grim milestone in the HIV epidemic is accompanied by many intense emotions. There is deep sadness because of all the lives lost, and we carry that pain and sorrow with us in all that we do. There is guilt that we’ve survived when so many others were not so lucky. There is fierce anger that hate, indifference, and ignorance prevented our government from effectively responding to the epidemic. There is determination to advance our stories and experiences, particularly for long-term survivors who chose this day to commemorate the unique issues they continue to face.

And 39 years later, there is still hope. Hope that we’ve grown stronger and wiser and that we will effectively address the complex issues that our communities face so that we don’t just end the epidemic but fundamentally change the world.

HIV, just like COVID-19, has revealed the structural inequalities that continue to plague our communities. The criminally ineffective response of the government in the ’80s was a reflection of the value they ascribed to the ones most impacted — gays, people of color, immigrants, poor folks, drug users, etc. The strategy then is being repeated now around COVID-19. Both governments basically said “Let them die.”

Forty years into the epidemic, one question remains: Why are people still dying from the disease? Science has been phenomenally successful with treatment. We know how to keep people alive and healthy. But people die not because of science, but because of inequality, homophobia, racism and a lack of access to quality health care. It’s déjà vu all over again.

I was fortunate enough to benefit from those advancements in HIV treatment, and I’ve been living with HIV for over 24 years. But my survival is not just because of science, it’s because of the strength and determination of communities that had the audacity to stand up and fight. Various parts of our communities took to the streets to demand action, equality and access. Different voices came forth to amplify the diverse experiences and unique needs of all the parts of our communities, from people of color, to trans folks, to immigrants and to sex workers. The struggle was to keep our communities alive because no one else was going to do it for us.

Audacity has always been at the heart of social movements. In a country of slavery and Jim Crow, it is basic yet audacious to declare that Black lives matter. It is fearlessness when a trans woman of color walks down the street fully expressing herself. It’s daring when a queer immigrant leaves their home to find a better life in a place where they can freely be who they are. It’s bold to endure 40 years of a pandemic that wrought such devastation. And through it all, some of us are lucky enough to stay alive.

Our survival has not been an accident. It is a direct result of activism and organizing. That is how we are going to bring an end to the 40-plus years of HIV. And it’s also how we are going to find a way out of our current predicament.

Lead image: Protesters march to Wall Street during an ACT-UP and Occupy Wall Street demonstration on April 25, 2012, in New York City. ACT-UP (AIDS Coalition to Unleash Power) was marking its 25-year anniversary in supporting services for people with AIDS worldwide. Photo by John Moore/Getty Images