HIV at 38: Our Longtime Companion

The world has been living with HIV for 38 years. Of course, HIV has been around much longer than that, but it was June 5, 1981, when the CDC published a report about the very first cases of AIDS. Our entire world changed after that, and for the past 38 years we’ve endured death, loss, fear and discrimination — but also courage, activism and resiliency.

In the United States, gay men have been the majority of new HIV infections, total infections and total deaths. For nearly 40 decades, gay men have been the most severely impacted by this epidemic, and Black gay men have been hardest hit.

In the beginning of the epidemic there were calls to quarantine or even tattoo people living with HIV. We were blamed and ostracized, and people lost their homes, their jobs and their families. It took seven years for the president of the United States to even say the word. The LGBT community was utterly devastated by the epidemic and the unimaginable loss of so many lives.

At every turn, this world tried to halt our mere existence. They criminalized us, pathologized us and violently attacked us. But through it all, LGBT people kept our community alive. The endurance of our community is one of the greatest survival stories of the modern era.

We lost so much brilliant potential, so many artists, organizers, inventors and innovators. The death and suffering left our community traumatized, and the scars remain to this day.

The activism that was born out of the epidemic forever changed the world. The mobilization and the messaging got results, and it laid the groundwork for the recent success we’ve seen around LGBT rights. In fact, it continues to be a blueprint for how to respond to an ignorant and hateful administration.

That activism continues today, and one important area of focus is HIV long-term survivors.

June 5 is not just an AIDS-iversary; it is also Long-Term Survivors Awareness Day. This day is meant to shine a light on the physical and mental health issues long-term survivors encounter. Long-term survivors endured some of the darkest days of the epidemic, and in 1996 advancements in antiretroviral treatments changed the world forever and kept so many of them alive.

After the advancements in treatment, people living with HIV could now survive and live a long and healthy life. But survival has its own challenges. Now many HIV-positive people must confront what used to seem inconceivable — growing old with HIV.

I understand that challenge. It’s been 23 years since I tested HIV-positive. I’ve officially reached the point where I’ve been living with HIV for half my life. When I tested positive in 1996, I was told I’d have 10 to 15 years to live. About six months after testing positive, treatment for HIV was revolutionized, and that forever changed the epidemic.

But for a brief moment I had the unique experience of living on the cusp of two epidemics — the AIDS epidemic of death and loss, and the HIV epidemic of extended life and new opportunities.

Coming to terms with death and then realizing you are going to live can have a profound impact.

The phenomenon of long-term survivors is something no one prepared for. It’s a concept that seemed unthinkable in the early years of the epidemic. At the same time, it was unimaginable that HIV would be our companion for nearly 40 years. Yet here we are.

Today is June 5, and the epidemic is another year older. This day is not just about acknowledging a moment in history. It’s a celebration of our community’s activism, strength and resilience. And nowhere is that exemplified more than in long-term survivors.

Today, on June 5, Hornet commemorates Long-Term Survivors Awareness Day.

Featured image courtesy The New York Historical Society / Getty Images