In early 1968, a 16-year-old boy called Robert Rayford admitted himself to the City Hospital in St. Louis. He was weak, emaciated, riddled with stubborn infections and, though unknown to doctors initially, plagued with cancerous lesions known as Kaposi’s sarcoma, a skin disease normally only observed in elderly men of Mediterranean descent. Doctors were baffled by his case, and after various tests and treatments did little to help him, a year later, Rayford died.
Interest in Rayford’s mysterious case eventually waned and was largely forgotten about. However, in 1982, with numbers of similar cases amongst gay men in New York and California surging, a new disease was named: Acquired Immune Deficiency Syndrome, or AIDS. Along with the AIDS epidemic was a renewed interest in Rayford’s case, with tissue samples tested later strongly suggesting that the teenager had suffered from the same disease.
This discovery has thrown up a host of questions about the origins and transmission of the AIDS epidemic, and Rayford is now remembered as the first HIV/AIDS patient in the United States.
So who was he?
His background was vague
Robert Rayford was born in St. Louis, Missouri to Constance Rayford and Joseph Benny Bell. He had an older brother, and was raised solely by his mother. An African-American family, they lived in 19th-century brick housing which provided affordable healthcare for several working class families such as their own.
Little was known about Rayford’s personal life, other than that he was nicknamed ‘Bobbie’, and was ‘painfully shy, mentally slow, maybe even intellectually disabled.’
He was severely ill when he first went to hospital
In early 1968, a then 15-year-old Rayford admitted himself to the City Hospital in St. Louis. His legs and genitals were covered in warts and sores, while his whole pelvic area and genitals were severely swollen, which later spread to his legs, leading to a misdiagnosis of lymphedema. Pale and thin, Rayford also suffered from shortness of breath. Tests revealed that he had a severe chlamydia infection which had, unusually, spread throughout his body.
He told doctors that he had suffered with the symptoms since at least late 1966. Doctors first suspected that Rayford had contracted an exotic illness. However, he had never travelled outside of the Midwest, let alone the country.
He was uncommunicative with doctors
Doctors described Rayford as uncommunicative and withdrawn. He refused to allow doctors to perform a rectal examination. Dr. Memory Elvin-Lewis, who cared for Rayford, later said of him that ‘He was the typical 15-year-old who is not going to talk to adults, especially when I’m white and he’s black. He was not a communicative individual. He knew the minute I walked into the room that I wanted something more from him—more blood, more lymph fluid, more something.’
Rayford also gave conflicting statements about his sexual history. He once boasted that he was ‘the stud of all time’, and another time claimed that he had only had sexual intercourse once, with a young woman from his neighbourhood, to whom he attributed his illness. He was eventually moved to Barnes-Jewish Hospital (then called Barnes Hospital).
In late 1968, Rayford’s condition appeared to improve, but by early 1969 his symptoms had worsened; he had severe difficulty breathing and his white cell count was dangerously low. Doctors realised that his immune system was dysfunctional, and he died of pneumonia on 15 May 1969.
He had likely been sexually abused
Doctors treating Rayford theorised that he was an underage sex worker who had had anal intercourse, but never considered that he might have been the victim of child sexual abuse. Though nothing has been confirmed, there is significant anecdotal evidence that abuse was widespread in the Rayford family. At one point, Rayford mentioned that his grandfather had shown similar symptoms, and died a few years beforehand. His grandmother died soon after. Both were only in their 50s. The family have said very little about the case.
Indeed, Robert’s autopsy confirmed that he had extensive anal scarring. Since he was only 16 when he died, and it usually takes around 5 years for the disease to reach full severity, it is likely that Rayford was abused from a very young age, and was possibly even forced into child sex work.
His autopsy was equally confusing
Rayford’s autopsy presented more issues than it solved. It revealed small, cancerous tumours throughout his body, which were concluded to be Kaposi’s sarcoma, a rare cancer that normally affected elderly men of Mediterranean and Ashkenazi Jewish ancestry, but was almost unheard of amongst Black teenagers. This sarcoma was later designated as an AIDS-defining illness.
These findings further baffled the attending doctors, and a review of the case was published in 1973 in the medical journal Lymphology.
His tissue samples later showed evidence of HIV/AIDS
In 1984, ‘HIV’, which was originally named ‘lymphadenopathy-associated virus’ and was spreading rapidly through the gay communities of New York City and Los Angeles, was discovered. Marlys Witte, a doctor who had cared for Rayford before his death, thawed and tested Rayford’s tissue samples for the disease. The tests came back negative.
However, three years later, she retested the samples using Western blot, the most sensitive test then available, which said that all nine detectable HIV proteins were present in Rayford’s blood. An antigen capture assay also reportedly discovered HIV antigens in tissue samples.
These test results astonished researchers, who had their conventional understanding of how the disease arrived challenged entirely. Further studies on Rayford’s DNA strongly suggested that Rayford’s infection was an early strain of HIV that was distinct from that which led to the epidemic in the early 1980s.
Rayford’s last remaining tissue samples were lost during Hurricane Katrina in 2005. Though never definitely proven, if the findings were factual, Rayford would have had the earliest recorded case of AIDS in the United States.