History—and memories—are tricky things.

The history of the HIV/AIDS epidemic is a source of interest/fascination for many people. Scholars, journalists, and many others have written about every conceivable aspect of it: historical, medical/scientific, sociological, anthropological, philosophical, geographic, economic, and, not least, personal. (I’m sure I’ve missed multiple fields in that list…which just goes to show how widespread the interest in HIV and AIDS really is.)

Because of the way we learn history in the U.S., most of us tend to think of it as something “static.” Moments frozen forever in time…with both details and meanings preserved in amber.

But history (whether written or oral) always reflects the biases and preoccupations of those who tell it. There is a reason we say “History is written by the victors.”

To a certain extent, the internet has democratized the telling of history—and that is all to the good. In the case of the U.S. HIV/AIDS epidemic, defining the “victors” is not always a straightforward task. Certainly those who survived the epidemic are victors—and the substantial bookshelf of works on HIV and AIDS certainly contains many works by narrators who represent historically excluded and marginalized groups. This “story” is richer and more nuanced than most.

But the fact remains that the history of HIV and AIDS has been told largely by the “usual suspects” (i.e., privileged white men with access to media platforms from which others have been barred). So…much remains to be done—and discovered.

My commitment to the HistoryOfHIV.org project is to tell as much of the story of HIV and AIDS as possible. I want to provide information about HIV and AIDS that is informative, interesting, and meticulously documented. The “proof in the pudding” will be found in the downloadable PDFs for each year of the epidemic. Most contain triple or quadruple the number of pages devoted to sources and notes as have been devoted to the entries themselves.

I also commit to seek out the “histories” of HIV and AIDS that have been overlooked or suppressed. I will include entries and sources that reflect the interests and perspectives of as many groups and communities as possible—including historically excluded racial/ethnic groups (Black, Latinx, Asian, American Indian or Alaska Native, and Native Hawaiian or other Pacific Islanders), women, members of the LGBTQIA community (especially those whose experiences are less frequently documented than those of the white, gay men who were the first to be affected by HIV and AIDS), and those from the addiction and disability communities. (This list will undoubtedly grow over time.)

I invite you to join with me in that project by submitting items of interest (with appropriate documentation) in the Contact Form. History will always be “truer” when it is told by people from multiple vantage points.

Over the course of 40 years since those first cases of what would come to be known as AIDS were reported, the ways we think about HIV and AIDS—and certainly the ways we talk and write about them—have evolved. In my opinion, much of that evolution has been for the better.

We don’t refer to “AIDS victims” anymore (a linguistic change demanded and secured by people with HIV themselves). Nor do most of us who work in the field of HIV refer to people as “HIV-infected” anymore. We’ve learned that these (and many other) terms are stigmatizing, and since HIV continues to spread largely because of stigma, changing language is a huge and important step in the right direction.

That direction, of course, being the end of the HIV epidemic—both in the United States and globally.

But some of what we think we know about the history of HIV and AIDS is also changing. Every year, more primary sources about that history become available. For this timeline, I try to use sources as close to the events as possible to document the entries.

Memories are fallible, and eyewitness stories almost inevitably change over time. Details are inadvertently lost, and narratives can be misreported without any intent to confuse or deceive. Where there are discrepancies or disagreements about details and dates, I will always do my best to note those in the PDFs available at the top of each year’s page.

Where possible, I will always provide specific dates and list events in chronological order. Entries without specific dates occurred in the year in which they are listed, but the order of those entries may not reflect the actual chronology of events. As access to new sources becomes available online, dates for specific entries may change.

I began compiling this history in 2011 for the 30th anniversary of that first CDC report. At the time, I was the founding Executive Editor of AIDS.gov (now HIV.gov), and I was tasked by the director of that program with creating a timeline in a few weeks. To do that, I borrowed liberally from other timelines I found across the web.

But it always bothered me that so many of those sources had different dates for the same event or wildly different statistics for the same time period. Very few, if any of them, provided information about their sources. Over the years, I spent hundreds of hours of my own time researching the “facts” about the history of HIV. I was surprised by how often information that was reported as “fact”—even by major media outlets—was wrong. Over time, rooting out and correcting those mistakes became something of an obsession.

There are also some important historical facts that would never make it through federal clearance, and I wanted to tell as much of this story as possible—the good, the bad, and the ugly. After 15 years as Executive Editor at HIV.gov, I retired from that role in 2020, so I now have the freedom to create this site—the culmination of a long-held dream. Here, I am limited only by my commitment to fully document everything I post.

Maybe it is a foolish endeavor to believe that a project like this one can change people’s minds, hearts, or perspectives. But the enthusiastic responses I’ve gotten over the years to the HIV.gov Timeline give me hope. I believe there’s a place in the world for a high-quality information source that uses a historical framework (or “loom,” if you like) to weave together stories about science/medicine, politics, economics, culture, community, and the best and worst impulses of the human heart.

Weavings help us create shared histories, rooted in the lives, loves, pains, sorrows, and—yes, joys—of real people. They serve as aids to memory—essentially hiding information in plain sight for those who know where and how to look. And they are heirlooms of times-gone-by that we can draw around us when we need comfort, shelter, and connection.

With that for context, I hope the outcome of this project will be a sort of digital “cousin” to activist Cleve Jones’ brilliant and beautiful NAMES Project, more commonly known as the “AIDS Quilt.” While it will never pack the same emotional punch as the Quilt, I hope this timeline will serve as a different kind of testament to all those we have lost to AIDS—a witness to and judge of our failings as a culture and a celebration of individual human beings and groups who dared to love, serve, and advocate for those affected by HIV and AIDS.

As the AIDS Memorial account on Instagram says, “What is Remembered, Lives.”

Thank you for visiting. I hope you find some information of interest here—and I ask you to share the HistoryOfHIV timeline with others who might find it useful.

A. Paige Baker
Creator/Editor
HistoryOfHIV.org

August 25, 2021

I am so grateful to those who help me find new entries for the Timeline. In particular, I want to thank my dear friend and collaborator Deb LeBel. She has been unflagging in her support for this project—as well as taking the time to send me articles and hunt down leads on things. I am blessed by her friendship and enthusiasm for this project.