Original publish date: May 12, 2014
45 years ago this week, May 16,1969, the face of modern medicine changed forever when 15-year-old Robert Rayford, sometimes identified as “Robert R.” due to his age, died in a St. Louis, Missouri hospital. He was a slender, uncommunicative street kid whose condition left doctors distressed, perplexed and…scared. Although no-one knew it at the time, Robert R’s was the earliest confirmed case of HIV/AIDS in North America. Rayford’s death was a mystery to doctors, who could not account for his symptoms. The true cause of his death remained unidentified until 1987.
Like the disease itself, this young man’s story is one of tragedy. He spent all fifteen or sixteen years of his life (some sources list his birth date as February 3, 1953 but no one knows for sure) in a poor African American ghetto in St. Louis. Of his enigmatic life, little else is known. Described by medical personnel as being “mildly retarded”, Bobby Rayford first checked himself into Barnes Hospital in St. Louis in the early Spring of 1968. His doctors were baffled by his symptoms. His swollen loins were covered with open, infected sores. He struggled while breathing, was razor thin and pale as a ghost.
Doctors suspected some form of cancer at first, but subsequent tests revealed the patient had herpes, genital warts, and a severe case of chlamydia. The infection spread, in the form of purple colored lesions, to his legs, causing a misdiagnosis of lymphedema, an infection of the lymph nodes. He said that he had been suffering from these symptoms for at least two years, or since he was about thirteen years old. When doctors suggested a routine rectal exam, Rayford steadfastly refused. The doctors, like most of America at that time, did not think to ask about homosexual contact. It wasn’t until later that the doctors noted in Robert’s medical charts that that he was likely gay and speculated that the young man refused the exam for fear of confirmational “evidence” being found therein.
When asked about his sexual history, Rayford became dodgy, at first calling himself “the stud of all time” and later claiming absolute celibacy. Still later he claimed to have had sex just once, “with a neighborhood girl,” and that he started to feel sick shortly after that encounter. Strangely, although doctors suspected that Robert was highly promiscuous, they never considered the possibility that he had been molested. All moral judgments aside, clinicians were helpless as they watched the teenager slowly waste away before their eyes from a disease they were unable to diagnose and powerless to treat. During his first months in the hospital, doctors tried everything they could think of to stop the spread of this mysterious malady. They cut back on his water and salt intake, administered drugs to promote water loss, wrapped and elevated his legs, all intended to reduce the swelling. Nothing worked, and the inflammation moved up his body and into his lungs. Finally they tried powerful antibiotics and were cheered in late 1968 when Rayford’s condition seemed to be stabilizing.
By March 1969 the patient’s symptoms returned with a vengeance and his condition steadily deteriorated. He had increased difficulty breathing, and his white blood cell count plummeted. The doctors determined that his immune system was shutting down. By all accounts, this uneducated street kid maintained his dignity in the face of inevitable demise. In the words of Dr. Memory Elvin-Lewis, who attended to him during his final days, “He barely said ‘boo.’ Finally, he developed a raging fever and at 11:20 pm on May 15, 1969 Robert Rayford died, never knowing of his place his history.
For 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 a rarely seen cancer called Kaposi’s Sarcoma. In this case, “KS” manifested itself in the form of small purplish lesions discovered on Rayford’s left thigh and within his soft tissue. Doctors concluded that the lesions were Kaposi’s sarcoma, a rare type of cancer most often found in elderly men of Mediterranean or Ashkenazi Jewish ancestry. Today KS is taken as almost certain proof of AIDS, but in 1969, its significance was not understood.
For the next 18 years, doctors and researchers continued to search for a solution to the mystery of Bobby Rayford. 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 this puzzle. Finally in October of 1987 , the riddle of Robert R.’s illness was solved, and the answer was nothing short of astonishing. New tests of the dead boy’s preserved blood, brain and organ tissue samples led to a grim conclusion: Robert R. almost certainly died of AIDS, making his the earliest case of the killer disease ever discovered in the United States.
However, as you may imagine, Bobby Rayford’s most awful claim to fame is not without controversy. Although a review of the case was eventually published in the medical journal “Lymphology” in 1973, many believe that the perceived immorality of the disease’s alleged contraction stifled the search for a cause, treatment and a cure. After the autopsy, blood and tissue samples were kept in cold storage at the University of Arizona but after the October 1987 revelation there was no further follow-up, in part because the samples disappeared.
Robert R’s case is the classic chicken or the egg argument. After all, his illness had to come from somewhere. Rayford said he never traveled outside the Midwest and had never received a blood transfusion. Since doctors concluded that Rayford’s AIDS infection was contracted through sexual contact, it must be presumed that AIDS was present in the US before Rayford’s symptoms arose in 1966. Rayford told doctors he had never visited big cities such as New York, Los Angeles, or San Francisco, where the HIV-AIDS epidemic was first observed in the United States. The commonly accepted trajectory of HIV / Aids epidemic is Africa to Haiti to US to Europe and finally to the rest of the Americas. But Robert never left the region, much less the country.
Doctors, investigating the case in the early 1980s, speculated that Rayford may have been a male prostitute. That assumption was made when the medical community believed the progression from initial infection to the diagnosis of AIDS took only two and a half years. Ironically, researchers believe that it was precisely because the St. Louis gay population was small in number by comparison that enabled the Bobby Rayford strain of HIV / Aids to die out. Therefore, St. Louis did not become a hotbed of Aids activity.
The saddest aspect of this entire story is that all of this happened before anyone had ever heard the term “AIDS” (which stands for “Acquired Immunodeficiency Syndrome” by the way). Robert Rayford has been described variously by history as mildly retarded, sexually promiscuous or as a male prostitute. I have yet to find any account, and believe me I have read many, that calls him a man. In his case, the medical community is operating under the same social mores society was slogging through in the Nixon years. Modern day scientists have found the same telltale “KS” evidence in African children as young as three years old. If we accept this scientific fact, could it be possible that Robert R. was born with it, rather than contracting it through nefarious means?
In one of his rare communicative moments, Rayford told the doctors that his grandfather “had the same symptoms.” This might suggest a congenital “immunodeficiency”, and that other factors may have exacerbated this problem rather than caused his illness and eventual death. So even if Robert were lying about his sexual history, there is little else to suggest that he contracted his KS lesions from gay sex. Instead, based on his statement about his grandfather’s similar symptoms, Robert’s lesions may well have developed from the inside outward.
There is one final theory about this first Aids case in America that I will put forth for all of those who love to sink their teeth into a good conspiracy theory. In the book “The River” a theory is advanced that Robert became vulnerable to the illnesses during the 1950’s when 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, allegedly 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. These tests, conducted at the height of the Cold War, were explained away to local officials as being simple smoke screen experiments designed to shield US cities in the event of a Soviet attack.
Decades later it was revealed that those tests involved zinc cadmium sulfide, a mixture of zinc sulfide and cadmium sulfide. It’s frequently referred to as a fluorescent particle because it glows in ultraviolet light. This quality makes it easy to trace for efficacy after the fact. 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 body cavities. All of these conditions were noted in Robert R’s report. Also, the effects can be passed by a mother to her fetus, so it’s entirely possible that Robert may have developed the seeds of his illness while still in the womb.
We’ll most likely never know the whole truth about the death of Robert Rayford. In part because we weren’t looking for the answers in the Aids context we’re so familiar with today. We are content to label him as the first victim of a terrible epidemic that ran unchecked through our nation during the Moral Majority driven Reagan Revolution. Most of the knowledge gained about Aids in the two decades between Robert Rayford’s death and ultimate diagnosis came from research and development, not from doctors and hospitals, but from the victims themselves. We Americans owe a great debt of gratitude for our understanding of this dread disease to those who have suffered, and often died, while searching for a cure. Robert Rayford, a mere medical footnote in history, among them.