In 1969, a St. Louis teenager died with mysterious symptoms. Intrigued, a Washington University researcher carefully froze the teen’s autopsy samples. Almost 20 years later, scientists realized that his might have been the first AIDS-related death in the United States
The levees failed like a weak immune system. It was August 2005, and Dr. Robert F. Garry, a retrovirologist from Tulane University, was moving his daughter into her college dorm room in Texas. He sped back to New Orleans, managing to cross the National Guard’s cordon into the disaster area six days after Hurricane Katrina hit. One of the first civilians allowed back in, he made it past the high water, desperate to reach the Tulane lab that bears his name. Helicopters and motorboats continued to search for survivors; Garry, too, had a rescue to make: He had $50 million worth of adult stem cells swimming in liquid nitrogen that needed saving.
Garry also had samples stored in freezers. Luckily, his lab had a backup power source—a fact that kept him calm until he arrived and learned that the backup system had failed. The compromised samples included blood, tissue and lymphatic fluid from a St. Louis teenager who had succumbed in 1969 to an unknown virus. Garry hadn’t been able to store those samples in liquid nitrogen because it might destroy the antibodies.
And the test results from those antibodies had already given modern medicine quite a jolt.
In late 1968, a shy 15-year-old African-American who has come to be known as Robert R. walked through the doors of City Hospital. He was in considerable discomfort, with swollen genitalia and hemorrhoids, and appeared to the staff to be mentally slow. Questioned repeatedly, he said he’d had sexual encounters with a neighborhood girl.
Robert R.’s family had little money, and under normal circumstances, he would have either lived or died in obscurity at City Hospital. But a series of physicians and researchers took an interest in his puzzling symptoms.
When he was admitted, only his genitalia and legs were swollen. In the following months, his entire body swelled with fluid. Physicians ordered that his legs be elevated, his salt and water intake restricted. Seven weeks worth of antibiotics—tetracycline, penicillin, sulfisoxazole and cephalothin—did nothing.
He was what doctors call a zebra: His condition did not accommodate a solid, “either this or that,” black-or-white diagnosis. Proven treatments didn’t work.
That’s when Robert R. came to the attention of a young lymphologist at Washington University named Dr. Marlys Witte. She began to suspect that Robert R. had contracted a sexually transmitted, chlamydial disease called lymphogranuloma venereum (LGV). Coincidentally, the Washington University dental school had recently hired a microbiologist with an expertise in the new field of chlamydial infections. Her name was Dr. Memory Elvin-Lewis, and she volunteered to help Witte try to identify the bacteria—a painstaking process that required two weeks of culturing samples of Robert R.’s blood and other body fluids in fertilized eggs.
Elvin-Lewis found the Chlamydia bacterium everywhere she looked. It was systemic, yet it didn’t elicit the immune response of LGV. “I got only a whisper of an antibody response, much as if you had a localized chlamydial infection,” she explains now. Even more puzzling, the bacterium was in the bloodstream, where no one had ever isolated Chlamydia before.
Robert R. was moved from City Hospital to Barnes Hospital, where residents studied his case with interest. Elvin-Lewis visited him there and found a “wasted, uncommunicative, frightened young man” who was fast deteriorating. He had a low T cell count—a standard measure of the body’s immunological strength—and his immune system was no longer responding. The whole time she was in the room, he never spoke a word.
He was eventually transferred again, to Deaconess Hospital, where he died of pneumonia in May 1969. Six months, three different hospitals, and no one had a diagnosis. His family consented to an autopsy, which revealed evidence of anal scarring and a particular kind of lesion no one had identified when Robert R. was alive. Some of the doctors thought the scarring indicated that Robert R. was gay; others pointed out that he could have been sexually abused.
The autopsy also allowed the clinicians to take every kind of sample specimen they could from Robert R.’s body. Elvin-Lewis looked again for Chlamydia and found it in the lungs and many other tissues. She kept samples from the autopsy in a preservative, sucrose-potassium glutamate.
A few years later, in 1973, Elvin-Lewis and Witte presented Robert R.’s case at a lymphology conference and published a journal article on his systemic chlamydia in The Journal of Lymphology. The paper they presented actually raised as many questions as it answered. Why had Chlamydia spread throughout the body, when it normally stayed near the port of entry? And why did this young man have these purplish, malignant lesions called Kaposi’s sarcoma, as the alert pathologist had discovered during the autopsy? Kaposi’s sarcoma was known as an old man’s skin disease, typically affecting Jews and Italians. The pathologist decided that Robert R. had an African variant that affected children and primarily targeted the lymphatic system.
That decision suggested an intriguing question: How did a black 15-year-old from St. Louis acquire Kaposi’s sarcoma?
In early 1981, eight years after Elvin-Lewis and Witte stumped their colleagues at that lymphology conference, the Centers for Disease Control in Atlanta began receiving reports of a rare type of pneumonia in gay men. At that time, it could be treated only with a medicine called pentamidine isethionate, which physicians had to order directly from the CDC. The first orders came from San Francisco, but soon there were orders flowing in from New York, Florida, Texas and Georgia.
Then another rare illness started showing up in young gay men of various ethnic backgrounds—again, it was a form of Kaposi’s sarcoma. Researchers at the CDC soon discovered that all of these patients had compromised immune systems. A term was coined for this new, mysterious virus: gay-related immunodeficiency syndrome, or GRID.
Later, the affliction became known as AIDS, or acquired immune deficiency syndrome. Epidemiologists searched frantically to find out when and how the virus had made its way to America.
Meanwhile, in 1984, Witte had published a letter in The Journal of the American Medical Association implying that Robert R.’s symptoms seemed suspiciously like those found in people with human immunodeficiency virus (HIV)—but saying that in her samples, Chlamydia was undetectable. Witte cited the 1973 paper that she and Elvin-Lewis had written together, but did not ask Elvin-Lewis to co-author the letter to the editor.
“Later, when Witte phoned and asked if I’d send her my specimens,” Elvin-Lewis recalls, “she said, ‘Did you see my letter?’ I said no. When I did read her letter, it really worried me; I thought maybe I hadn’t done something properly.”
Elvin-Lewis agreed to send Witte her samples, long frozen and neatly labeled as her first case. “Don’t crack them,” Elvin-Lewis warned. “If you freeze and thaw, you lose things. I’ll send them in dry ice. Send them to someone you know is a good retrovirologist.” She heard nothing more.
On October 25, 1987, Elvin-Lewis was raking leaves in her St. Louis back yard when the phone rang. Without preamble, a reporter from CNN started firing questions. Unbeknown to Elvin-Lewis, there’d been a story in that morning’s Chicago Tribune stating that Dr. Robert F. Garry, a young retrovirologist at Tulane, had tested Elvin-Lewis’ samples of Robert R.’s blood for HIV antibodies. “The blood of Robert R. contained antibodies to every one of the nine HIV proteins used in the test,” the article disclosed.
When Elvin-Lewis learned what had happened, she was stunned. Witte had never followed up with her about where she planned on sending the samples to be tested. But as the Tribune article detailed, Witte had taken the samples to Tulane University. The paper also reported that a month earlier, Witte had shocked an audience at a lymphology conference in Vienna by announcing the following: “We are currently testing body fluids and tissues preserved for nearly 20 years for evidence of HIV or related retrovirus, to
see whether this perplexing case was actually HIV infection before its time. Preliminary determinations
are suspicious.”
Shaken by the reporter’s call, Elvin-Lewis immediately dialed Witte, who had moved to Tucson, to ask her what was going on. Why was this scientific information being published in the public media before appearing in a medical journal?
According to Elvin-Lewis, Witte didn’t explain how the leak occurred or why Elvin-Lewis had been kept out of the loop. All she said was, “You’re the primary author,” referencing the 1973 paper they published. “The ball’s in your park.”
The St. Louis Post-Dispatch picked up the syndicated Tribune story with the headline “Area Teen May Have Died From AIDS—1969.” Three days later, having caught wind of the breach of protocol, the Post ran its own story. The paper quoted Dr. Leon Robinson, chief of infectious diseases at St. Luke’s Hospital, who said, “I’m a little disturbed that there was no detailed report about this in a scientific journal.” Another researcher reportedly “refused to comment on the finding because he said he felt the researchers who were involved violated scientific ethics.”
“I don’t know who leaked what to this day,” Elvin-Lewis says. “People were probably excited and said things they shouldn’t have said to the reporter. It was not the way to do it—but the cat was out of the bag.”
A week after the CNN call, Elvin-Lewis appeared on ABC’s World News Tonight. Peter Jennings introduced “Medical Watch,” which began on the porch of the brownstone where Robert R. was born. His brother and mother couldn’t provide much insight. The reporter interviewed Elvin-Lewis, showed the freezer where she saved her samples and cut to Garry’s lab in New Orleans, where he flashed the test results on camera. Using Elvin-Lewis’ samples, he’d gotten a strong positive result for HIV.
Later, People magazine did a story on Elvin-Lewis. Time and Newsweek also covered the story. The results of the discovery finally appeared in JAMA the following October, under a group byline that included Garry, Witte and Elvin-Lewis. Soon after the journal article appeared, someone broke into Garry’s lab in Tulane and stole copies of the test results he had performed on Robert R.’s samples harvested at autopsy. The thief was never caught, but luckily, Garry had backups in the lab.
Several years later, he reported at the International Congress of Virology that Robert R.’s HIV was a rare, early strain—almost identical to the strain researchers first identified in Paris, but not the strain that became known in the late 1970s and continues to spread AIDS worldwide.
Robert R.’s case teaches us something important about the history of the retrovirus, Garry says now. Rather than making a single blitzkrieg attack, HIV started with guerilla warfare. “There may have been several different strains of the virus at low levels making incursions in different countries,” says Garry. “At some point one of those strains got established, and that’s what spread the pandemic.”
“When you are young and you discover something nobody wants to hear, you feel like your whole career’s going down the drain,” Elvin-Lewis says now, thinking back to the sting of that early conference presentation.
Not long after Robert R.’s death, in the early ’70s, she took a trip to Ghana and discovered that the plants people were using to clean their teeth prevented dental disease caused by bacteria. That was the turning point of her career. She and her husband, Walter Lewis, eventually became experts in the field of medical botany, and a textbook they wrote is now used in classrooms across the country. When Washington University’s dental school closed, Elvin-Lewis stayed at the university, where she is now professor of biomedicine in microbiology and ethnobotany.
Elvin-Lewis regrets the way the Robert R. discovery was broken in the press. She blames Witte—who refused multiple requests for an interview for this article—and other colleagues, “who unwittingly released the information without my knowledge or consent.”
When asked what we can learn from Robert R.’s case about the origin of AIDS, an unresolved and controversial subject among scientists, she followed up in an email:
“In my opinion HIV did not evolve de novo in the 20th century ... it was known as Slim’s Disease in Africa and occurred among men that frequented brothels ... The enigma remains—did Robert R. get his HIV from a passing stranger, a family member that perhaps was a sailor (like other known early cases), or has it simply been around the U.S. for a very long time? ... Zebras that occurred in charity hospitals would have been unlikely to be pursued if it had not been that all of us were young, just starting out and curious enough to make this case a challenge to all our diagnostic skills.”
Elvin-Lewis is still curious; she’d love to know when and how Robert R.’s strain of HIV arrived in St. Louis. The young man who, according to Garry’s tests, may have been the first American to die of AIDS had lived his entire life here. To his doctors’ knowledge, he never had a blood transfusion. He did not do drugs. He never left the area. And no other cases had been reported in St. Louis.
“A friend here lost a son to AIDS in the 1980s,” Elvin-Lewis says. “She told me that everyone sensed a big problem at the time, but knew little about it. She suspected that others in St. Louis had been infected with the HIV virus at a much earlier date, but no one has ever connected those deaths to AIDS.”
She pauses. “Like me, Garry had difficulty persuading the scientific community of his results. But he was able to present a paper showing that the strain of HIV he isolated was an earlier strain. That’s what really vindicated us.”
Elvin-Lewis says that Robert R.’s case is a reminder that a skeptical reaction from your colleagues doesn’t mean your samples are useless. A confounding specimen, carefully preserved, can shed light across the decades—and yield answers no one expected.
“Sometimes,” she says, “you just have to wait for technology to catch up.”
Other times, nature beats us to the punch. Hurricane Katrina compromised the last of Robert R.’s samples, leaving skeptical scientists with no way to replicate Garry’s findings independently. All that’s left is
a preponderance of scientific evidence that suggests the following: In 1969, a teenage boy from St. Louis may have been the first American to die of AIDS-related complications.