On May 15, 1969—six weeks before the Stonewall uprising in New York City would set off the modern gay rights movement and 12 years before the Centers for Disease Control and Prevention (CDC) first reported a strange and fatal cluster of symptoms in gay men that would come to be known as AIDS—a 16-year-old Black teen named Robert Rayford died of pneumonia in a St. Louis hospital after suffering horrible symptoms that baffled his doctors. He initially went to the hospital in 1968 with swollen legs and genitals, fatigue and hemorrhoids. Doctors found that he had chlamydia which, unusually, had spread throughout his entire body, as though his immune system were powerless to contain the sexually transmitted infection.

Extremely tight-lipped, Rayford was either unwilling or unable to answer doctors’ questions about his sexual history, except to say that he’d had sex with one girl. But his hemorrhoids and other rectal trauma led doctors to wonder whether the boy had had receptive anal sex, either willingly or not. During an autopsy, doctors were even more shocked and confused to find that he had the internal lesions of Kaposi sarcoma, a kind of cancer almost always seen only in elderly men of Mediterranean, Middle Eastern or Eastern European descent. Researchers, including a microbiologist named Memory Elvin-Lewis, PhD, preserved samples of his tissue, thinking they might in the future help solve the riddle of his death.

Years later, in the late ’70s and early ’80s, many of the same symptoms began to appear in gay men in their twenties and thirties, many of whom quickly died. By late 1982, the term AIDS (acquired immunodeficiency syndrome) was used to describe the condition; a few years later, researchers isolated the human immunodeficiency virus (HIV), which attacked the immune system and was the cause of the mostly fatal opportunistic infections that led to AIDS.

As epidemiologists were looking to determine how the virus had arrived in the United States, Elvin-Lewis’s tissue samples of Rayford found their way to Robert F. Garry, PhD, a young retrovirologist at Tulane University, who discovered evidence of nine distinct HIV proteins in the tissues.

Garry’s discovery was somehow leaked to the press, and the news broke on October 25, 1987. “Area Teen May Have Died From AIDS—In 1969,” blared the front page of the St. Louis Post Dispatch—the same story that ran nationally and globally.

Since then, researchers, including Anthony Fauci, MD, the former director of the National Institutes of Health, have pointed out that the premise that Rayford had HIV and died of AIDS is likely true if not 100% definitive, given the inferior quality of the lab testing in the 1980s. Sadly, further testing is not possible, as in 2005, Hurricane Katrina destroyed Rayford’s remaining tissue samples, which had been stored in a lab in New Orleans.

Still, the discovery strongly suggested that HIV, which is thought to have spread from animals to humans in Africa throughout the 20th century, had entered the United States not in the mid-’70s, as had been widely believed, but at least once before that. That theory made sense to some researchers at the time, such as James Curran, PhD, who oversaw AIDS at the CDC. “It’s just not logical that AIDS entered the country only once," he told Time magazine. “I think that there were several entry points but that most of them occurred in the late 1970s.”

But how did a teenage boy who never left the Midwest contract a virus that did not spread widely in this country until it began circulating in metropolitan centers among gay men and people who inject drugs in the late 1970s?

It is significant, says Ted Kerr, an HIV historian who has researched and written about Rayford, that we learned about both Rayford and Gaetan Dugas in October 1987. Dugas was the gay French-Canadian flight attendant whom journalist Randy Shilts infamously named Patient Zero in his book And The Band Played On and claimed was a primary super-spreader of HIV in the United States. “We continue to talk about Dugas,” says Kerr—even though scientific evidence definitively debunked the Patient Zero theory in 2016—“because his narrative centers a white man, even if he’s a villain,” says Kerr. (Dugas died of AIDS-related causes in 1984.)

Kerr notes that, though it was widely reported at the time, the Rayford discovery received only a fraction of the attention of the Dugas case. That, Kerr says, reflects how mainstream media and the public have traditionally paid more attention to the epidemic among certain individuals—for example, middle-class gay white men—than among others, such as Black people or people who inject drugs.

How HIV presumably made its way to Rayford in 1960s St. Louis may never be known, as most of his relatives are apparently deceased. There isn’t even a confirmed photo of Rayford; one that appears on a few online sites is of someone else.) Rayford’s story is a haunting reminder of all the lives likely lost to AIDS before the syndrome even had a name—including many people who injected drugs and died in New York City public hospitals in the late 1970s and early 1980s of a mysterious disease often called, at the time, “the junkie flu,” which doctors later became near certain was AIDS.

And Rayford’s own story remains haunting and heartbreaking—to think of a quiet teenage boy suffering and eventually dying of a horrible collection of symptoms whose origin even the best researchers at the time could not discern. On the anniversary of his death in 2019, Elvin-Lewis, still alive at age 91, told The Washington Post: “Every time this date comes around, I think about this young man and the hell he went through. It’s burned in my brain.”