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- Aug 9, 2004
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- Mt. Pleasant, SC
Full story at https://www.washingtonpost.com/history/2019/05/15/mystery-illness-killed-boy-years-later-doctors-learned-what-it-was-aids/?utm_term=.12386a00b6cbThe 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.
. . .
Researchers slowly traced HIV’s probable origins to chimpanzee populations in central Africa, where it probably jumped to human hunters through contact with animal blood. They believed the virus crossed the globe with infected travelers in the 1970s. Multiple vectors of infection were identified, including homosexual and heterosexual contact, blood transfusions and sharing contaminated needles.
Little of that seemed to point to an obscure Midwestern medical mystery almost 15 years earlier. But for Rayford’s doctors, the descriptions of AIDS rang a bell. In 1984, Witte published a letter in a journal noting the similarities with Rayford’s history. In 1985, when a test became available that could detect HIV antibodies, Elvin-Lewis packed some of her long-held samples in dry ice and shipped them to Witte, who had them tested by Robert Garry, a Tulane virologist. Garry tested for nine distinct HIV proteins. Rayford’s blood showed evidence of all nine.
. . .
Researchers were skeptical. But as the testing grew more refined, Garry did further analysis that more conclusively pegged Rayford’s infection as an early strain of HIV that was distinct from the strain that led to the epidemic in the early 1980s.
Those tests haven’t erased all doubts, Fauci said. For him, “nailed-down proof” would require more testing on Rayford’s tissue samples. But that’s no longer possible. The last known tissue samples to survive were in Garry’s lab in New Orleans. They were wiped out by Hurricane Katrina in 2005.