Robert R.: The American Mythology of AIDS Begins in St. Louis

Justine Nicholas
June, 2007

Robert R. died on May 16, 1969.

He spent all fifteen or sixteen years of his life (No one is sure of his date of birth) in a poor African American ghetto in St. Louis. Of his truncated life, little else is known. In the words of Dr. Memory Elvin-Lewis, who attended to him during his final days, “He barely said ‘boo.’”

Dr. Elvin-Lewis had just earned her PhD with a dissertation on Chlamydia when she met Robert at a clinic run by Washington University in St. Louis. Now a septugenarian, she continues to research and teach at the same university and has become one of the world’s leading authorities on traditional herbal medicines.

Robert was Dr. Elvin-Lewis’s first patient. She and Dr. Marlys Witte, who would later move on to the University of Arizona, could not believe what they saw. “We knew that he had genital edema and severe proctitis,” Dr. Witte recalled. Furthermore, “He had Kaposi’s Sarcoma of the rectum and anus, which is an unusual place for Kaposi’s sarcoma to be,” she said.

Edema is swelling and/or fluid accumulation in various parts of the body. It can cause its victims to experience difficulty in breathing, to cough up blood, to sweat excessively and to be anxious. Proctitis is an inflammation of the lining of the rectum and is usually a side effect of radiation therapy, antibiotics or some sexually transmitted diseases such as Chlamydia. And Kaposi’s Sarcoma is a cancer that causes patches of abnormal tissue to grow under the skin, in the lining of the mouth, nose and throat and other organs. The tissue becomes visible in reddish or purplish lesions on the skin, which may be painful although they may not be causing other problems. However, if KS spreads to the digestive tract or lungs, bleeding can result. And if it spreads to the lungs, it can make breathing difficult.

In the early days of the AIDS epidemic, edemae, proctitis and KS would become hallmarks of the disease. However, according to Dr. Witte, young people at that time had rarely, if ever, suffered from these diseases. In fact, nearly all recorded cases of KS in the US before 1981 were in elderly men of Eastern and Southern European origin. Outside of those regions and the US, the only other known cases of KS were in boys and young men in Africa. Drs. Witte and Elvin-Lewis were stumped. So was Dr. William Drake, the pathologist who performed the autopsy on Robert, whose last name the doctors have withheld. Back in 1969, no one had heard of AIDS. A decade would pass before cases of “gay cancer” would surface in New York and California, and nearly another decade would elapse before the disease spread to the general American population. So the doctors could not connect the “dots” of the edema, proctitis and KS to the rapid weight loss and complete breakdown of the immune system they observed in the benighted boy.

So mystified were they that they saved samples of Robert’s tissues and blood for nearly two decades, hoping that future advances in medical science and technology would help them solve the mystery.

As the AIDS epidemic unfolded during the 1980’s, they realized that the complex of systems Robert exhibited were those of the newly-spreading disease. During this time, the American scientific establishment, led by Dr. Robert Gallo, journalists such as his mouthpiece Gina Kolata (in my opinion, the worst science writer in the history of the New York Times) and parts of the homosexual activist community, convinced the medical establishment, then the general public, that HIV (which Gallo claimed to have discovered)=AIDS in spite of evidence to the contrary. (Look here, here, here and here) Nearly all subsequent research on AIDS has been conducted from that belief about the etiology of the disease. One result is that Witte and Elvin-Lewis, who are considered among the top practitioners in their fields but who readily admit not to being epidemiologists, went along with the accepted wisdom and submitted the samples of Robert’s tissue and blood to the then- newly developed Western Blot test for HIV. It came up positive for all nine proteins that make up the HIV antibodies. To put such a result into perspective, the Armed Forces rejects recruits who test positive for two of the proteins and the Red Cross turns away prospective blood donors who have three.

The results of this test, and the story of Robert R, briefly made the news in October of 1987 (http://www.aegis.org/news/ct/1987/CT871003.html). However, there has been no follow-up, in part because the samples disappeared. And because nearly everyone accepts the dogma that HIV causes AIDS and that the constellation of symptoms Robert exhibited are those of AIDS, he is commonly seen as the first documented case of AIDS in the United States.

He may very well have been the first American afflicted with AIDS and one of the first to have HIV. However, the links I’ve provided, as well as a number of other sources from respected scientists and medical practitioners, have questioned the link between the two. “Coincidence does not equal causality,” Dr. Peter Duesberg points out. Even Luc Montagnier, the Pasteur Institute scientist who first claimed to have isolated HIV, has never claimed that it is a direct cause of AIDS. But, because the link is almost never questioned, Robert R. is seen as the first in a parade of people who’ve contracted the HIV virus, then slid inexorably into AIDS. Scientists who, like Duesberg, question such a premise cannot get their papers published or grant money for further research. So the medical establishment looks for ways to eradicate HIV and the social service and education establishments promulgate the myth that early detection of HIV will stop AIDS in its tracks.

Even if one accepts the theory that HIV causes AIDS, one still has to wonder how Robert got the virus and came down with the sort of illnesses he had a decade before anyone else in the US exhibited them. Some researchers have postulated that he received a weaker strain of the virus and that it mutated into the form that would infect so many during the 1980’s. Even if that were so, it seems rather implausible that someone would develop the same constellation of illnesses a decade before anyone else. Did the virus not infect other people during that time? Why not others who had what are now commonly identified as risk factors for contracting HIV?

Even if we accept the notion that Robert is the first documented American case of HIV/AIDS, there are still problems with the story of his illness and death. For starters, all known viruses spread only from one human body to another; they are not airborne as bacteria and other infectants are. By now, most of us are aware of what the vectors of HIV are believed to be: blood transfusions, intravenous drug use and unprotected sex. Robert claimed never to have received a transfusion or to have used IV drugs, and the doctors could not find evidence of either. As far as anyone knew, he’d never traveled out of the St. Louis region, much less the United States. He claimed to have had sex just once, “with a neighborhood girl,” and that he started to feel sick shortly after that encounter. The doctors, like most at that time, did not think to ask about homosexual contact, and he refused to submit to a rectal scan. (The lesions were found only during his autopsy.) When his case was re-examined during the mid-1980’s, the disease had very few American victims who hadn’t received blood transfusions or weren’t IV drug users or gay men in a few cities. So, naturally, the doctors decided that if he hadn’t used drugs or had a transfusion, gay sex was most likely the cause.

St. Louis is far from the early centers of the disease. The Gateway to the West surely has its charms, but it is not generally known as a “must” destination for world travelers. (The commonly accepted trajectory of the HIV and the disease is Africa-Haiti-US-Europe-the rest of the Americas.) I asked an acquaintance of mine who hails from Robert R.’s hometown about the St. Louis gay scene. “That phrase is an oxymoron, even today,” he deadpanned. “And it was even more so back then.” So, even if Robert had gay sex (or was a prostitute, as some have claimed), it’s hard to imagine where or from whom he would have received the virus in those days, as there was not a large pool of infected people in St. Louis or anywhere else in the United States. And not everyone who gets the virus gets sick.

And not everyone who gets sick has the “classic” symptoms of AIDS. In fact, the incidence of Kaposi’s Sarcoma has declined among AIDS sufferers for the past twenty years according to a 2005 report in the Journal of Clinical Oncology. That is to say, it began to decline only five years into the AIDS epidemic in the US. Yet the fact that Robert R. had KS is still cited as “evidence” that he had HIV and AIDS. Furthermore, most of the AIDS sufferers who developed KS were gay and bisexual men; intravenous drug users and transfusion recipients did not get those lesions. There is only anecdotal evidence that Robert had engaged in any gay sex, so it is hard to understand from whom or where he may have gotten the Human Herpes 8 virus, which is said to be the cause of KS.

This leads us to another point: HIV and Human Herpes 8 are supposed to infect people under basically the same conditions, namely, when the patient’s immune system is compromised. On the other hand, before the AIDS epidemic, HHV8 was not believed to be spread through sexual practices, although it was believed that the virus could be spread through blood transfusions or other exchanges of bodily fluids. So, even though we now know that HIV does not spread only through sexual practices, and Robert (as far as anybody knew) didn’t use IV drugs, get a transfusion or travel outside his hometown, the judgment that he was infected by HIV, which led to his getting AIDS and KS as a symptoms of the disease, has stood for more than two decades after the scope of the disease has expanded.

One more point about Robert’s illnesses: KS has been found in African children as young as three years old. If we accept that KS afflicts people with compromised immune systems, it would seem that a three-year-old who gets sick with it either was born with few or no defenses or loses them in his infancy due to environmental factors. In one of his rare communicative moments, he told the doctors his grandfather “had the same symptoms.” This might suggest a congenital immunodeficiency, and that HIV, HHV8 and Chlamydia had exacerbated this problem rather than caused his illnesses. If this is so, one would have to question the notion that HIV breaks down the immune system and leaves the body vulnerable to AIDS.

Robert’s case also begs the question as to how he developed KS lesions in his anus and rectum, when lesions in those parts of the body had not been seen in American or European KS patients up to that time. While the notion that anal sex spreads HIV (and the notion that HIV causes AIDS) has not been questioned by most researchers in the quarter of a century since the discovery of the virus, no one has found any evidence that anal sex directly causes KS lesions. So even if Robert were lying about his sexual history, there is little to suggest that he contracted anal and rectal KS lesions, let alone HIV, from gay sex. Instead, there is evidence that anal lesions are the end-result of an internal gastro-intestinal infestation: in other words, the lesions develop from the inside outward. One possible initiator of such a trajectory is a genetic predisposition to autoimmune diseases, as well as other environmental factors. If his grandfather indeed “had the same symptoms,” as Robert claimed, this, along with the fact that the only known juvenile cases of KS had been found in African boys, the notion that KS could result from inborn conditions has at least some credence.

Yet another theory describe in the book “The River” says that Robert became vulnerable to the illnesses he contracted because of an incident that should cause anyone who knows about it to distrust governments. During the 1950’s, the Army Chemical Corps conducted open-air chemical warfare tests in American cities. These included thirty-five aerosol releases in and around St. Louis. Most of those tests were conducted in low-income neighborhoods full of people of color, probably to minimize public resistance to such tests. One of those test areas was only half a block from the house in which Robert was born.

At the time, the Army and the CIA (who worked with the Army on some of the projects) gave a cover story to local officials and the press in which they claimed that they were conducting the experiments to see whether smoke screens could shield US cities from Soviet attack. More than two decades later, an army spokesman insisted the tests were “completely safe.”

However, those tests involved zinc cadmium sulfide, a mixture of zinc sulfide and cadmium sulfide. It’s frequently referred to as a flourescent particle because it glows in ultraviolet light. This quality makes it easy to trace in diffusion experiments. However, cadmium is a highly toxic metal that is even more pernicious when spread through the air. Because the kidneys absorb it quickly, it is commonly associated with kidney failure, leads to cirrhosis of the liver and causes severe damage to the lungs and edemae. All of these were noted in Robert’s report. Also, the effects can be passed by the mother to her fetus, so it’s entirely possible that Robert may have developed the seeds of his illnesses while he was still in the womb.

So what, exactly, made Robert sick? We may some day have the answer, but not as long as a postmortem diagnosis made with the limited knowledge the scientific community had about a disease, its etiology and epidemology is allowed to stand in the light of evidence to contradict it, and as long as that analysis is still accepted as part of a foundation for research and other work related to AIDS. Poor Robert R., who surely suffered in life, has been used in death as a foundation for one of the more crippling myths in our history. He and the fourteen friends and acquaintances of mine whose deaths were attributed to AIDS are surely spinning in their graves.

Copyright © Alberta Reappraising AIDS Society and Marcel Girodian, Wednesday, June 27, 2007.