Good investigative work requires dogged determination. Running an enigma to ground can take years.
Occasionally, medical mysteries initially thought solved are found later to have very different truths at their cores.
One such mystery concerned the AIDS epidemic in America. As long as the killer remained comfortably within the gay community not much was done to investigate. As soon as AIDS found its way into the heterosexual population, though, suddenly America’s interest in ferreting out the cause was paramount. Panic stricken virologists and other epidemiologists worked feverishly to isolate the source of this sexually transmitted disease first endemic among homosexual men.
AIDS is what defined the decade of the 1980s, a decade that lived in fear beneath the penumbra of a certain and tortuous death from a highly communicable pathogen. Somewhere, there was a Patient Zero, the epidemiological well-spring from which this plague spewed forth.
The commercial airlines recognized the goldmine presented by hiring female “stewardesses”. Certainly, they were paid less. There was also marketability in women that men did not have – women could be hawked by an airline as possible sex partners for the discriminating male traveler choosing its service over another.
The airline industry developed glamour. The titillation of a sexy stewardess in uniform, pandering to any business traveler’s ego, was priceless. These were women without boundaries, women who went anywhere, anytime. Therefore, they must be promiscuous. The unspoken possibility of sex with a globe-trotting gal was also alluring. Married women were aggressively discouraged from working as stewardesses. The single women, all within a certain preferred range of body type, height, and attractiveness, were wanton women (in the minds of the average male of the day). Although morbid obesity was not the problem in the 1940s it is today, there were no “big girls” on board.
Thus, by the late 1940s male flight attendants were not only undesirable, they were suspect as well. Occupying a job with women that devoted itself to customer service, good manners, and fine grooming, the stewards garnered suspicions of being “queer”.
As further incentive to not hire men as flight attendants, the death of a gay steward in 1954 became a scandal sufficiently great to lead to a rash of “fag bashings” (both gay men and lesbians were targeted) in Miami, Florida. It was one of the nation’s worst anti-gay outbreaks in history.
Homophobia was so great by the late 1950s almost no airlines in the United States would hire men as flight attendants – even Eastern and Pan Am stopped hiring stewards. Stewardesses, however, were very desirable. They were marketed as young, beautiful, and sexually available—this was hardly an acceptable career choice for any he-man. In the same way that the sexual orientation of male nurses was suspect, only “pansies” wanted to be stewards.
The discrimination in the labor market meant the United States Supreme Court had to step in and force airlines to hire male flight attendants. This happened in 1971 after nearly 20 years of female-dominated service. Even then, the Court’s decision forcing US airlines to hire men was greeted with derision in the press. It also raised homophobic fears of placing men in such a servile and sexualized role.
Gaëtan Dugas was a French-Canadian born February 20, 1953. His life was on a collision course with history. In 1972, Dugas first became sexually active. [He would later claim he had over 2,500 sexual partners in his lifetime, whether all male is unknown. He may have been bisexual.]
He started out as a hairdresser. Wanting to travel, this French-speaking Canadian learned that flight attendants for Air Canada had to be bi-lingual. He moved to Vancouver and learned English to qualify for the job. He found work as a flight attendant on Air Canada. This career choice allowed him the freedom to move around the world, visiting exotic locales, and meeting many strange men for anonymous sexual encounters. In 1977, he was legally married in Los Angeles, California, in an illegal attempt to gain United States citizenship.
The hedonism of the 1970s raged unchecked, and by the middle of the decade “gay” culture became pop culture. Gay male partiers in the mid 1970s found an outlet on New York’s Fire Island. Gay men rented time-share space in houses on the island and partied their summers away “in season”.
Gay and straight partiers alike finally found their Valhalla, however, in New York City in a crummy little club in the 1970s called Studio 54. This rat hole was converted into a hot spot known all over the world. Celebrities fell all over themselves to get in and be seen there. Its allure was its faux air of exclusivity. No club before or since carried the cachet of Studio 54. Co-founded and owned by a cabaret-style, (almost a caricature) flamboyantly gay man, Steve Rubell, and a straight-laced heterosexual lawyer, this kitschy club defined hipsters in the Seventies.
The music was disco, the dance beat adapted from gay men and their party scene. The mock S&M dance moves, the sweaty bodies, the throb of the music, the drugs consumed, and the fact that not just anyone could get in heightened its allure.
The term “velvet rope” came into existence then – a red velvet rope (as one might see in a museum keeping patrons at a safe distance from a particularly priceless exhibit) became the literal and symbolic barrier between the plebes on the street and the hipsters within. Each night crowds gathered outside Studio 54’s doors; admission was granted whimsically by a group of door men and many times by Steve Rubell himself.
The criteria for entry were pure sadism: one night only women might be allowed in; other times, a sloppily dressed man might be sent away while another, looking exactly like that man but “famous”, would be let in. Gay-themed parties were held there often, and casual sex in the bathrooms and the “exclusive” privacy lounge was common among attendees.Donna Summer performed her brand of dance music that was embraced by the gay community as was she.
In conjunction with Studio 54, other bars for gay men to frequent thrived. Another meeting place was the bath houses still found in many larger cities. Once serving the utilitarian function for neighborhood residents to bathe (considering most homes up until the late 1920s did not have indoor plumbing) these quaint reminders of The Good Old Days were social gathering places for gay men. They were prevalent in New York City and in San Francisco. [Bette Midler, a great favorite among gay men, got her start singing in gay bath houses; her piano player in those days was songwriter/musician Barry Manilow).
On October 31, 1980 – ominously enough, Halloween night – the French-Canadian gay male steward Gaëtan Dugas visited a gay bathhouse for the first time on a layover in New York City.
A strange disease lurked among the gay denizens and creepers of the bath houses, though. Men began dying of pneumonia and other respiratory illnesses, but only after drastically losing weight and developing horrific skin lesions on their faces, necks, backs, and chests. This disease became known in the gay community as “gay cancer”. It was particularly volatile, and it progressed rapidly. Dugas caught it early, possibly with his first encounter in the New York gay bathhouse on Halloween 1980.
Meanwhile, as a symbolic sign of the coming Armageddon, Studio 54 was forced to close its doors for liquor license violations and tax evasion; entrepreneurs Steve Rubell and his business partner were sentenced to short terms of imprisonment. [Rubell later died of AIDS.]
The End of Days was seemingly at hand.
Concern for dying gay men was not paramount on America’s mind. As more cases of the mysterious killer emerged, the name was changed from “gay cancer” to “gay-related immune deficiency” (GRID). This, at least, was an open recognition that whatever was causing the disease was compromising a body’s immune system. It didn’t explain, however, the rather esoteric choice of gay men (and soon discovered, IV drug users) by an unintelligent, non-sentient pathogen as victims. It wasn’t until the first heterosexual cases of “gay cancer” emerged that the disease was examined more closely.
Dugas, meanwhile, knew he was sick. He didn’t know exactly what was wrong, but he had developed the skin lesions, associated with “gay cancer”. But one can’t spread cancer, of course, because cancer isn’t contagious. He indiscriminately continued having sex with men as his whims overtook him. His “advantage” was his mobility – as a flight attendant, he might be in any part of the US, Canada, or the world on a moment’s notice. His bitterness about having gay cancer crossed over into his lackadaisical attitude about possibly harming others.
First denying he was sick, he later willfully and maliciously spread the disease to unsuspecting partners. After having casual sex in a darkened room once, a male interviewee later reported he had turned on a light in the room where Dugas lay naked on a bed. This man spotted the lesions (Kaposi’s sarcoma) that were the classic earmarks of “gay cancer” on Dugas’ chest. When he remarked upon it, Dugas replied sardonically, “It’s gay cancer. Maybe you’ll get it.”
Gay men realized the danger. Many made the intuitive leap early that perhaps certain activities, such as anal intercourse, might be transmitting the causative agent. Others flatly refused to believe that their lifestyles might be endangering the health of themselves and of others. They felt it was a perceived backlash against gay men. Higher-profile gay men (many closeted during their lifetimes) and activists within the gay community began dying as well as underground sub-culture members (the “Crisco, leather, and fisting” set).
By April of 1982, 248 cases of the disease were reported nationwide with many others too afraid or indifferent to see a doctor. A virus was isolated in 1983 by French scientists (as Europeans were also recognizing and treating patients with “gay cancer”, many of whom were decidedly not gay).
This virus, after much international wrangling for recognition of discovery (with a particularly aggressive and bombastic US virologist lobbying for a claim that he had found it first--he did not) was later named Human Immunodeficiency Virus or HIV.
The disease it spawned was rechristened, in light of its indiscriminate virology, to Acquired Immune Deficiency Syndrome or AIDS. That same year that 248 cases of the disease were reported, local health departments in conjunction with the Centers for Disease Control (CDC) in Atlanta began investigating.
Gaëtan Dugas, the narcissistic and embittered flight attendant, alternately feeling morose and spiteful about his condition, was given the code name “Patient Zero”, the source of the AIDS epidemic in North America.
AIDS now had a face.
This makes little sense.
The Greek letter “Ω” always refers to the end of an event or series, not its beginning. Dugas was “Patient Zero”, not “Patient Ω” – if the intent was to use such a Greek designation, he would have been named “Patient Alpha” (“Α” or “α”) for “the beginning”. It is known that Dugas from the earliest investigations, based on diagrams the CDC (and others) created interlinking sexual contacts among those diagnosed with or dead from the mystery disease, was referred to from the start as Patient Zero (not Omega or “O”).
Dugas remained unrepentant. He originally denied that whatever disease it was he had could be transmitted sexually. His own words on the subject: “Of course I'm going to have sex. Nobody’s proven to me that you can spread cancer.” His depraved indifference to his sexual partners’ well-being was summarized with “It’s their duty to protect themselves. They know what’s going on out there. They’ve heard about this disease.” The last element of his bitterness was voiced by his wish to take others with him: “I’ve got gay cancer. I’m going to die and so are you.”
Gaëtan Dugas died in Quebec City, Quebec, Canada, on March 30, 1984, at the age of 31. His cause of death was kidney-failure brought on by his weakened condition from an onslaught of infections and ailments from AIDS.
In his wake, one of the unfortunate legacies he left was a renewed homophobia relative to male flight attendants. They became a lightning rod for America’s fear and anger over AIDS and its links with homosexuality. “Patient Zero”, Gaëtan Dugas, was reviled; in death he was even accused of bringing HIV to North America and spreading it around the country.
Almost any medical professional worth his or her license, whenever a patient dies of a strange ailment, takes the precaution of preserving tissue and blood samples for future research. It is extremely fortunate that some doctors going all the way back to the late 1950s had been so far-sighted. Working backward and re-examining suspicious or otherwise unresolved deaths from contagion globally proved enriching in piecing together the history of AIDS.
In 1979, before Dugas was infected, a bisexual German concert violinist, Herbert Heinrich, died. In 1989, after testing of medical samples from his body, it was learned he was HIV-positive.
A year earlier, a Portuguese man known only as Senhor José died under mysterious circumstances. He was treated at the London Hospital for Tropical Diseases to no effect. In later years, examination of preserved tissues verified he died of AIDS; the causative virus, HIV-2 was present, making him the first known confirmed victim. Genetic research on the virus indicated he probably contracted the disease in 1966 in Guinea-Bissau (on the northwest coast of Africa). Three gay men in California and six Haitian immigrants to the United States were later confirmed as AIDS victims from that same year.
Grethe Rask was a Danish surgeon who had traveled to Zaire in 1972 to lend medical aid for the sick there. She returned to Denmark in 1976 and became relentlessly ill. Her symptoms confounded her colleagues. She died in December 1977. Several years later in 1984, it was confirmed through testing she was HIV-positive. During her time in Zaire, it was known she was directly exposed to blood – it is believed this was the source of her infection.
In 1976, a Norwegian sailor, designated with the alias “Arvid Noe”, died; his wife and nine-year-old daughter died the next year of the same wasting disease. In 1961, the 15-year-old Noe had sailed on his first voyage to Africa. He worked a merchant vessel that plied along Africa’s west coast from mid-1961 to mid-1962; during this voyage he was treated for gonorrhea. He sailed again to Africa in 1964, with a port of call in Kenya in eastern Africa. In 1966, Noe started suffering from chronic joint pain and recurrent lung infections. By 1968, he could no longer pass a physical to sail, so he worked as a long-haul truck driver.
Noe’s condition stabilized, but then flared up again in 1975 (coincidentally the same year a strange disorder called “slim disease” was reported in Africa for the first time, the beginnings of epidemic AIDS). In addition to the respiratory condition and joint pains he developed motor skill problems and dementia before he died.
Both his wife and daughter developed an illness that mimicked his symptoms, and they died in 1977. Doctors, helpless to find the cause of death for the Noe family, preserved some tissue samples. In 1988, further testing showed Noe, his wife, and his daughter had all been HIV-positive
The dubious distinction of being America’s “Patient Zero” – the first documented and verifiable case of AIDS in the country – belongs not to Dugas but to a mildly mentally retarded black teenager named Robert Rayford (born ca. 1952-1953).
Rayford lived in a brownstone in a poor neighborhood in St. Louis, Missouri. His mother’s name was Constance Rayford, and he had a brother named George. Rayford was described as slender. His retardation left him relatively uncommunicative from shyness.
As early as his 13th year or sooner, he was sexually active. Beginning in 1966, he started having some physical problems that seemed chronic. His legs swelled, and he developed sores on his genitals and body.
Finally, in 1968, the boy was admitted to St. Louis City Hospital, then transferred to Barnes Hospital (now Barnes-Jewish Hospital) in St. Louis.
He was admitted with multiple, and strange, symptoms (given his tender age). The swelling in his legs was bothersome, his genitals and legs were covered in scrofulous skin, and his testicles were severely swollen. He was also emaciated (having lost much weight suddenly), and even though he was an African-American male he was considered “pale”. He also had shortness of breath. His symptoms led his caregivers at Barnes Hospital to conclude that one of his problems was lymphedema (a swelling caused by lymphatic problems). This was only a tiny part of his health issues, however.
He had a chlamydia infection (a bacterial venereal disease), clearly indicating he was sexually active. His doctors also uncovered evidence of the herpes simplex virus and the virus responsible for Epstein-Barr. Robert Rayford was not terribly forthcoming with his doctors, partly due to his retardation leaving him mostly uncommunicative, but also because he was embarrassed by something.
He led doctors to believe any of his sexual activities were strictly heterosexual, even claiming at one point to having a girlfriend (who failed to surface at the time). [This female was found some time later and was found to be in perfect health, relative to HIV and AIDS, from which one can only surmise she and Rayford had no intimate sexual intercourse or such activities were rare enough she was not exposed to critical levels by whatever ailed him.]
Diverting conversations occurred between Rayford and his primary care givers when questioned about his sexual activities. His doctors had not considered homosexuality initially, and all conversations, such as they were, seemed to be taken as referring to female sexual contacts.
Of a most enlightening nature was Rayford’s adamant refusal of any rectal exams. It seemed that he may have been exposed to homosexual activity (assuming the submissive role in anal intercourse). One of his attending physicians believed that he had been a victim of sexual abuse (a very likely scenario considering Rayford’s socio-economic background). He could also have been “pimped out” against his will by someone who procured males to engage with him. To date, this aspect of his life is unclear.
His first months in the hospital were spent with his doctors cutting back on his water and salt intake, and they wrapped and raised his legs, all to cut down on his tissue’s swelling. Despite this, the inflammation moved up his body and into his lungs. Antibiotics were tried in varying dosages, but Rayford’s condition continued to deteriorate.
The teen seemed stabilized by late 1968 (when he was around 15 years old). He had been transferred to Deaconess Hospital by then, and in March 1969, however, all of his symptoms reappeared and rapidly worsened. His breathing labored; his white blood cell count (as part of routine blood work) was noted to have dropped dramatically. The only thing concurred at the time was that Rayford’s immune system had been somehow compromised. He developed a fever and died either in the late hours of May 15, 1969, or the early hours of May 16 (sources differ). His primary physician recalled, “Eventually his entire body constituted almost one wave of hard lumps and watery swellings.”
Without a precise diagnosis, Rayford’s cause of death was attributed to the catch-all vagary “loss of vitality”. Intractable fluid imbalance and lung disease were listed as contributors. An autopsy revealed a surprise – his body carried a very rare cancer called Kaposi’s sarcoma internally (though he had but one external lesion on his right thigh). [Today, this cancer and its lesions are bellwethers of AIDS.]
Anal scarring also indicated repeated sexual penetration.
Because of the baffling nature of his case, doctors preserved several tissue and blood samples for later evaluation. In 1987, eighteen years after his death, molecular biologists at New Orleans’ Tulane University tested specimens of Rayford’s preserved blood and tissues. Their findings were stunning: a virus “closely related or identical to” HIV-1 was detected. Further confirmation testing in 1989 proved Robert Rayford (African-American teenage male of St. Louis, Missouri) was the earliest confirmed victim of AIDS in North America.
Before Robert Rayford in the US, there was a possible case found in a dead Jamaican native named Ardouin Antonio. He came to the US in 1927. He was working as a shipping clerk for a clothier when he died at age 49 on June 28, 1959, in Manhattan. He had developed a very rare kind of pneumonia, seemingly out of the blue. Decades later the doctor who had performed Antonio’s autopsy was asked to re-evaluate the case. Did he think Antonio possibly died of AIDS? “You bet . . . It was so unusual at the time . . . many cases of AIDS have been autopsied that we didn’t even know had AIDS.”
Molecular research shows the AIDS epidemic of the 1980s stemmed from a viral strain that had entered the US via Haiti about 1966. Other strains have been isolated as well. As in cases like Robert Rayford’s, the disease died with him (though he probably infected others, those people likely did not have access to the sheer number of sexual partners that, for example, Gaëtan Dugas had, and died before spreading it much).
AIDS in the United States was isolated in pockets of contagion until the promiscuity (homosexual or otherwise) of the 1970s gave the disease a clear path of propagation in humans. IV drug use, on the rise in the 1970s and early 1980s, also provided another avenue of blood-exchange necessary for the virus to thrive.
Tracing backward from Haiti (the source of the US strain in 1966) put the disease firmly in Central Africa. It existed as “slim disease”; the condition was universally ignored though many Africans died after mysteriously wasting away. In 1959, about the time the Manhattan Jamaican shipping clerk died of his rare pneumonia, a blood sample from a Congolese man was taken and preserved. Years later, this proved to be HIV-infected. This Congolese man’s fate is unknown (whether he developed full-blown AIDS and died from it or not). Similarly, a preserved lymph-node biopsy specimen taken from a Congolese woman in 1960 later proved to be HIV-positive.
Current scientific research is clear: sometime in the 1930s, a simian form of immunodeficiency virus mutated sufficiently and made the leap across species to become a contagious disease of people.
But, it doesn’t end there.
The direct lineage of HIV-1 was traced to two groups of mutations that formed in the primates that carried the simian version. One of the groups was dated to between 1847 and 1907; another subgroup dated to between 1606 and 1871. HIV-2 made the leap most likely between the date range of 1856 and 1922. Thus, it can be seen some prototypical version of the AIDS virus can be dated to the early 17th century.
Certainly it was not Gaëtan Dugas (though, like Typhoid Mary over half a century before him, many deaths could be placed squarely on his doorstep).
Certainly, the African-American teenager Robert Rayford (who had never been outside the city of his birth) was not Patient Zero, either – somebody had to give it to him in the first place.
Instead, about the only thing that can be said of HIV is that its “Ground Zero” location was almost certainly Central Africa.
And the real Patient Zero – the HIV-Adam or HIV-Eve – lived and most likely died there, somewhere in the Congo, unknown and unrecognized for the catastrophic role he or she would play in human history.
Dr. Memory Elvin Lewis
Dr. Memory Elvin-Lewis was kind enough to respond to this piece in person.
This doctor handled, and talked with (though reported as largely uncommunicative), Robert Rayford personally for a period during Rayford’s confinement, and also attended Rayford’s autopsy, confirming the KS diagnosis and noting the preservation of tissue samples that later were shown to carry the variant of the HIV-1 virus.
This good person also kindly corrected some of the misinformation about Rayford via a personal e-mail and was also kind enough to forward professional papers on the subject. One such paper, in Lymphology from 1973, gives, perhaps, the best clinical synopsis of the case. Another article, entitled Documentation of an AIDS Virus Infection in the United States in 1968 (by the same doctor and others), is also a “must read” for anyone interested in the earlier origins of AIDS in America.
Dr. Memory Elvin-Lewis, thank you so much for not only your contributions to science but to my humble efforts at disseminating it for general readership. I truly appreciate it.
Larry Kramer was actively and aggressively involved with what was then known as “gay cancer” in the early 1980s when the disease first made its poisonous presence visibly known in the United States as “gay cancer”.
Mr. Kramer was a writer in New York and a part of the gay culture. He, however, decided that merely watching his friends die quietly wasn’t enough.
He wrote myriad articles on the subject and penned a stage play, “A Normal Heart”, that did well. In May 2014, this stage play was brought to the small screen. It was presented as a movie on HBO starring Jim Parsons (of “Big Bang Theory” TV fame). The story documented the earliest days of the AIDS epidemic in America told from the perspective of the New York City/Fire Island cohort. It is engaging: it is what TV can do (but usually fails to do except in rare cases like this one).
From a front-line perspective
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