The 16-year-old boy had the kind of illness that wouldn’t be familiar to doctors for years: He was weak and emaciated, rife with stubborn infections and riddled with rare cancerous lesions known as Kaposi’s sarcoma, a skin disease found in elderly men of Mediterranean descent.
The boy, Robert Rayford, died on May 15, 1969, in St. Louis. It would be more than a decade before doctors started seeing similar cases among gay men in New York and California. In 1982, with the numbers of sick surging, the disease got a name: Acquired Immune Deficiency Syndrome. The AIDS epidemic had begun.
But the mystery of Robert R. — as he was long known to researchers — would linger in the minds of the physicians who had cared for him. With a sense that something important could someday be learned, two doctors collected tissue samples after his death and froze them for almost 20 years.
In time, the case of a poor young African American who apparently never left the Midwest would add a surprising twist to the understanding of a disease many connected with gay white men in cosmopolitan coastal cities. Researchers would come to see Rayford as the country’s first known death from a strain of the human immunodeficiency virus, HIV, the virus that causes AIDS.
“Every time this date comes around, I think about this young man and the hell he went through,” said Memory Elvin-Lewis, a microbiologist who was central to the case. “It’s burned in my brain.”
For some, the assertion that Rayford died of AIDS may never be fully proved. Anthony Fauci, a renowned AIDS expert and head of infectious-disease research at the National Institutes of Health, said the inferior state of antibody tests at the time make the case of Robert R. both fascinating and frustrating.
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