He was a slender, uncommunicative boy whose condition, in 1969, left doctors first at City Hospital and later at Deaconess Hospital in St. Louis both distressed and baffled. Only 15 years old, he was slowly wasting away before their eyes, dying from a disease they were unable to diagnose and powerless to treat. Microbiologist Memory Elvin-Lewis was at the boy’s bedside regularly for two years, and because she had young children of her own, she and her family found his suffering especially poignant. “The case has always stayed in our minds,” says Elvin-Lewis, 54. “We were frustrated and saddened by our inability to help him.” The boy eventually died of his mysterious disease on May 16, 1969.
For 18 years, with others who had tried so desperately to save the patient now known only as Robert R., Elvin-Lewis continued to search for a solution to the mystery. Finally, last month, the riddle of Robert R.’s illness was solved, and the answer was nothing short of astonishing. New tests of the dead boy’s blood, brain and organ tissues, which had been preserved over the years, pointed to a grim conclusion: Robert R. almost certainly died of AIDS, making his the earliest case of the killer disease yet discovered in the American-born population.
Mildly retarded and raised in a poor black neighborhood, Robert R. was hospitalized first for painful swelling in his legs and genitals. But the boy was also afflicted with a host of infectious agents, including chlamydia, a sexually transmitted bacterium. “That’s how I got involved,” says the Canadian-born Elvin-Lewis, a professor at Washington University in St. Louis who had acquired her expertise in chlamydia while pursuing her doctorate in microbiology at England’s University of Leeds.
Despite his age Robert R. showed evidence of sexual promiscuity, though he led the doctors to believe it was heterosexual. “Whenever we questioned him about his sexual activities,” says Elvin-Lewis, “he’d put us off by saying, ‘Yeah, I’m the stud of all time.’ We weren’t thinking of homosexuality.” Robert would not submit to rectal exams. During his first months in the hospital, his doctors cut back on his water and salt intake, administered drugs to promote water loss, wrapped and elevated his legs, all to reduce the swelling. Nothing worked, and the inflammation moved up his body and into his lungs. Next they tried powerful antibiotics, but the boy’s condition steadily deteriorated. “Eventually his entire body constituted almost one wave of hard lumps and watery swellings,” recalls the still-anguished Elvin-Lewis.
For the lack of a more precise diagnosis, Robert’s death was attributed to loss of vitality, intractable fluid imbalance and lung disease. An autopsy revealed numerous other problems, including evidence of the then rare cancer called Kaposi’s sarcoma. Today KS is taken as almost certain proof of AIDS; then its significance was not understood.
Elvin-Lewis, however, wouldn’t let Robert R.’s strange case drop. “I wanted to save everything I could,” she says, “in the hope that someday new techniques would enable us to figure out what had really happened.” She carefully placed specimens of the boy’s tissues and fluids in a five-by five-inch box for preservation at—70°F. Through 16 years she meticulously maintained Robert’s last remains, until a near disaster two years ago. Early in 1985 she accompanied her husband, Walter, a botanist, on an expedition to the Amazon basin, and in her absence her lab was remodeled. Two of her four cryogenic freezers were temporarily plugged into faulty outlets, and half the microbiologist’s invaluable collection of diseased specimens was ruined. Fortunately the contents of the other two freezers, including the only clues to Robert’s fate, escaped undamaged.
Elvin-Lewis then shipped the specimens to Robert R.’s former lymphologist, Dr. Marlys Witte—who, also suspecting AIDS, had requested them for further study. This year Witte, now a professor of surgery at the University of Arizona, asked Dr. Robert Garry of the Tulane University Medical School to run state-of-the-art tests. Last month Garry pronounced himself “99.9 percent sure that this boy had AIDS.”
His doctors now believe that Robert acquired the AIDS virus through homosexual practices and that the disease knocked out his immune system, allowing other infections to run rampant. Elvin-Lewis and others had previously described the case in clinical journals, offering a tentative diagnosis of AIDS only 14 years ago. But the recent vindication of their theory has raised a number of worrisome new questions. If AIDS had already been present in the U.S. as early as the ’60s, were there other patients similarly afflicted? “Oh, sure,” says Elvin-Lewis. “The virus doesn’t come from nowhere, and Robert R. had to be infected by someone, and he probably infected others. But the disease didn’t take hold. The real epidemic required the excesses of the sexual revolution of the ’70s. A virus grows in virulence when it is passed back and forth frequently in a limited population. That condition was met when gay promiscuity and drug addiction gave the virus the amplification it needed to thrive.”
Though the riddle of Robert R. has been solved, Elvin-Lewis says she will never forget him. “I’ve seen thousands of patients, and I’ve seen many die, but why is it that this poor little boy would stick in my mind all these years?” she wonders. “He never said much, but he left a big impresson on me.”