40 Years of HIV: What Pandemics Can Teach Us

Silence = Death. That was the rallying cry of ACT-UP, the AIDS Coalition to Unleash Power, founded in 1987 to demand that the federal government fund research, prevention, and treatment for HIV. Their calling was clear.

From the first reports in June 1981 of a “mysterious illness” among gay men in New York and California until the end of his presidency, Ronald Reagan was conspicuously silent about HIV or AIDS. The federal government’s response to HIV was marked by more silence and even ridicule. Their handling of HIV provided a blueprint for how not to respond to a pandemic. A lack of leadership resulted directly in needless suffering and tens of thousands of deaths in the United States alone.

Forty years later, the COVID pandemic has forced us to re-learn this lesson and others.

But what have we learned? Both pandemics — HIV and COVID-19 — shine a light on how a disease can be politicized with drastic consequences. Both unleashed judgment, blame, and shame. Both stirred up denialism and conspiracy theories. Both laid bare deep disparities and prejudices based on race, class, gender, and sexuality. Both resulted in a steep rise in violence against members of communities blamed for originating the virus.

We know that silence equals death — and so do stigma, intolerance, systemic racism, anti-LGBTQ sentiment, sexism, and other forms of oppression. And we know that even in 2021, 40 years later, HIV continues to be stigmatized almost everywhere and still criminalized in more than half our states.

More than 75 million people worldwide have been diagnosed with HIV since 1981, and nearly half of those people have died. Despite advances in treatment over the past 25 years, those treatments are not available to the most vulnerable among us. As a result, nearly 700,000 people have died of AIDS in the U.S. alone. And people in our country are still dying of AIDS.

But more transmissions and deaths could have happened. 

It’s widely acknowledged that the community response to HIV was one of the most effective public health interventions in modern history. LGBTQ people, people of color and other vulnerable communities recognized early on that the government was not going to help us. They didn't act because "the right people were dying."

And so our community sprung into action.

It was communities, not the government, that established HIV prevention campaigns, testing programs and support services.

It was community-led organizations, not the government, who raised money to fight for access to treatment and push for policies to ensure everyone had access to care.

It was people, not the government, who created food banks, housing services and provided end-of-life care for their loved ones.

Who could forget about Ruth Coker Burks, a straight woman in Arkansas who buried more than 40 strangers in her family’s plot because no one else would? Or the lesbian and bisexual women who cooked dinners for the dying?

Our community came together because the government failed.

When COVID-19 hit the U.S. in early 2020, there were swift comparisons between COVID-19 and HIV. Others were quick to point out the differences.

What those of us who are longterm HIV survivors have experienced over the years is what millions have experienced compressed into one year of the COVID-19 pandemic. But during those first years of the HIV epidemic, the world was silent while we were dying. In many ways it was quite different.

But it is also true that the administration in office as COVID-19 began could and should have done so much more — the bigotry, lies, denial and lack of response to science and fact was stunning. And people died.

Pandemics like HIV and COVID-19 teach us about loss on an unimaginable scale, but they also teach us about courage, radical self-love and the power of action and community.

We have learned that while community action can serve many needs, we still need our government to take responsibility in ensuring that the right information, research, testing, and medical interventions get to the community in a timely way.

HIV activism laid a framework for COVID-19 vaccine fast-tracking. HIV activism taught us how to galvanize resources. The HIV community responded rapidly to COVID, with HIV and AIDS service organizations becoming COVID-19 testing sites, because we knew what was at stake.

We knew that we needed to act and that we needed to act quickly. The alternative meant that our country would pay with human lives lost.

But most importantly, what we’ve learned from the HIV community is that human beings are resilient. Throughout the 1980s well into the 1990s, we created help and hope in the midst of death.

And today we are building health and happiness for our people. While ACT-UP taught us that Silence = Death, they also taught us that Action = Life. Stay quiet and people will die. Make noise and people will live.

We have the tools we need to end the HIV epidemic. Let’s keep making noise.

Andy Garcia is the Director of Advocacy and Action Department at the National LGBTQ Task Force. Jesse Milan, Jr. is the President and CEO of AIDS United.