The sad story of Robert Rayford (aka Robert R), the first documented case of HIV/AIDS in the United States, shows that if timing had been a little bit different, the AIDS epidemic could have happened a decade earlier than it did, and its epicenter could have been St. Louis instead of New York. His story raises some uncomfortable questions. How did HIV end up in St. Louis, of all places? And why did it stay local to St. Louis rather than becoming an epidemic?

His story made me uncomfortable, and sometimes that’s how I know it’s time to dig in a bit more.

We can theorize, and many people have, but we have to start with what we know. Robert Rayford was afraid and talked very little. One of the few things he said was that whatever he had, his grandfather had the same thing. But I think I have an explanation for how HIV ended up in an inner-city neighborhood in St. Louis and why it stayed localized and died out, rather than turning into an epidemic.

I learned of Robert Rayford when Gaëtan Dugas resurfaced in the news in late October of 2016. I remember thinking I had heard of an earlier case, and my investigation led to Robert Rayford. His story is readily available elsewhere, but I have problems with some of those accounts, so this is my attempt to remedy that.

What we know about Robert Rayford

Robert Rayford (Robert R) birthplace

This image shows Robert Rayford’s birthplace as it appeared in the late 1980s.

Robert Rayford was born Feb. 3, 1953 and died of complications from AIDS on May 15, 1969 at the age of 16. He underwent treatment at City Hospital, Barnes Hospital, and Deaconess Hospital, all in St. Louis, before he died without a diagnosis. A number of young doctors affiliated with Washington University, including Dr. Marlys Witte and Dr. Memory Elvin-Lewis, became familiar with his case. Their treatments ultimately failed to lengthen his life, but they had the foresight to save blood and tissue samples. Dr. Robert F. Garry diagnosed him posthumously in 1987. A second test in 1989 confirmed the 1987 findings.

The strain of HIV in Robert’s blood and tissue samples matched a strain in Paris from the same period. It was not the same strain that took hold in New York City in the 1970s and led to the AIDS epidemic of today.

We have very little other detail about Robert Rayford, although there has been a great deal of speculation. Contrary to some accounts, he was not a “street child.” He was not homeless. He grew up in a crude brownstone apartment on Delmar Boulevard in a poor part of St. Louis, just north of downtown, that he shared with his mother, Constance Rayford, and his older brother, George Rayford. Robert Rayford lived a basic existence but there is no need to take that dignity from him. He had food, clothing and shelter, lived with his family and attended school.

Clearly he did not use drugs. He had a girlfriend but did not pass HIV on to her. She had no signs of HIV or AIDS so he didn’t get it from her. His autopsy showed anal scarring, consistent with repeated sex with males. He refused such exams while alive and his doctors observed he seemed to be embarrassed about something. He may have been closeted, or may have been abused. His behavior is consistent with abuse, but we don’t know what he was hiding or why and we may not ever know for certain.

Robert Rayford died May 15, 1969 and was buried May 23, 1969, in Washington Park Cemetery. His cause of death was initially diagnosed (incorrectly) as Lymphedema, a type of abnormal swelling.

What we know about Robert Rayford’s family

City Hospital, St. Louis

This is City Hospital’s main administrative building. During Robert Rayford’s lifetime, there was a large 14-story tower behind this building. He underwent treatment at three different hospitals but didn’t receive a diagnosis until 1987, 18 years after his death.

Most of what we know about Robert Rayford’s family comes from 1940 Census records.

Robert Rayford’s grandfather, Percy Rayford, died in March 1966. Robert said Percy had the same symptoms he had. Robert’s grandmother, Sadie Rayford, died about eight months after Percy, at Homer G. Phillips Hospital. While Robert didn’t mention his grandmother that I know of, it seems likely she got the disease from Percy. Robert started showing symptoms in 1966 and checked himself into City Hospital in 1968.

Both Percy and Sadie’s death certificates list cardiac failure with acute pulmonary edema and congestion as their cause of death. Many things can cause that, but HIV/AIDS is among them.

Percy and Sadie Rayford moved to St. Louis from Mississippi before 1931. The 1931 city directory places them in an apartment on Franklin Avenue. By 1935, they lived in an apartment on O’Fallon. Both streets are a few blocks from the apartment on Delmar where Robert grew up. Neither building still exists today. Percy had only a third grade education, and Sadie had no education to speak of. They had at least eight children. Constance, their oldest, was born in late 1931. They did send their children to school. The 1950 Census will give a better idea of how much schooling Constance received, but those records won’t be released until 2022.

Percy Rayford worked as a laborer for the street department. He made $560 in 1939, which is slightly below the average salary of $571 for his line of work, and well below the poverty line, which was $925 for a family of four according to page 34 of Poverty in the United States: A-K, Volume 1. According to the same book, the average salary for men in 1939 was $1,006. Looking over the census records, I saw very few of Percy Rayford’s neighbors making four-digit wages for 1939. The highest I saw was a few dollars over the average. Adjusting for inflation, in 2015 dollars, Percy Rayford made $6 an hour.

Constance Rayford had two sons, George and Robert. George was born in 1951 and Robert in 1953. George died in 2007 and Constance died in 2011. This discounts the theory that Robert was born with HIV. Had he gotten HIV from his mother, she would not have lived to the age of 80.

The obituary of Vernola Rayford, Constance’s sister, indicates she was a member of the “Gospel Hall Baptist Church.” This may refer to Gospel Hall Assemblies, a conservative independent Christian church. This increases the likelihood that Robert Rayford and other members of his family were also religious.

I was able to locate locate Percy, Sadie, and Robert Rayford’s death certificates. All of their death certificates stated they were buried in Washington Park cemetery, a historically Black cemetery in Berkeley, Mo., a suburb of St. Louis. They may be in unmarked graves.

There was another Rayford family living in St. Louis during the same time period, but they came from Arkansas. I have no reason to believe the two families were related.

Little of this information was available before 2012. But this newer information raises as many questions as it answers. How did HIV end up in an impoverished St. Louis neighborhood in the mid 1960s? And how did it make its way from Paris to this impoverished neighborhood?

The French Connection

Deaconess Hospital

Robert Rayford died of complications of AIDS at Deaconess Hospital on May 15, 1969 at the age of 16. The former Deaconess Hospital was torn down in 2014.

When I think of heroin and the ‘60s, I think of famous people like Janis Joplin, Jim Morrison and Jimi Hendrix. But that stereotype, it turns out, is rather incomplete, not to mention late.

Heroin started out in the inner cities, an affliction of the poor who had meager resources. The counter-culture artists and rebels got the idea from the poor, according to the book Silent Cries: From the Hearts of Alcoholics and Addicts by W. Lionel Carrega, page 165. And it boomed throughout the decade. From 1961 to 1971, heroin arrests increased 700% according to the book Drugs and Society by Glen Hanson and Peter Venturelli.

In the 1960s, 80% of heroin users were male, and the average age of first use was 16 according to the book Narconomics: How to run a Drug Cartel by Tom Wainright, on page 212. A bag of it cost $5. St. Louis heroin was highly diluted, and that later led to injecting methamphetamine becoming popular, either due to supplies drying up or ineffectiveness, according to the book Disorderly Conduct by Bruce Jackson, on page 167.

Taking all of this into consideration, it seems more likely than not that intravenous drug use was present on Delmar in the 1960s. How did it get there?

Much of it arrived over ground, from New York. This heroin tended to be very diluted by the time it got here. Some went through Canada first. Small quantities arrived by airplane. Airline staff would secret it onto a plane. Sometimes it would come on international flights, stashed on the plane, then it would come through customs and they would remove it on the next flight according to the book Smack: Heroin and the American City by Eric Schneider, on page 105. It happens that St. Louis was TWA’s hub in the 1960s.

The hardest part to imagine is a contaminated needle, used in France, ending up in St. Louis. But it happens that “The French Connection” refers to the importation of heroin from Turkey through France into the United States, often through Canada.

Heroin users often use shooting galleries, a place where drugs and supplies are readily available. They might be in a house or an abandoned building, and frequently charge admission, according to the book Drugs and Society. Abandoned buildings were more common in the 1970s than in the 1960s, according to the book Interventions for Amphetamene Misuse by Richard Pates and Diane Riley, on page 193, and this could be why HIV took root in the 1970s instead of a decade earlier. The economic downturn of the 1970s made it easier to find places to do drugs in secret.

So how did an early strain of HIV from France end up in St. Louis? Perhaps an infected needle was included in a shipment. But there’s another possibility. In the early 1960s, St. Louis had  club district called Gaslight Square that drew huge crowds, including visitors from all over the world. The Rayfords lived about two miles from Gaslight Square. It’s entirely possible HIV could have found its way into a shooting gallery in the vicinity via Gaslight Square.

We know that Robert Rayford did not use drugs. Percy Rayford got it one of three ways but we don’t know which one.

It’s easy to imagine someone in the area getting HIV, herpes, and Chlamydia through heroin or methamphetamine use, then abusing Robert Rayford. That person did not necessarily have to be his grandfather. That conclusion requires evidence I don’t have at this time. Most likely his abuser chose Robert partly because he didn’t think Robert would talk, and he was right.

It’s also possible that Robert was abused, but got HIV by helping his grandfather. Today we know to take precautions around blood, but that wasn’t the case in 1966.

Why HIV didn’t take hold in St. Louis

We know Robert Rayford died from AIDS complications in 1969 at the age of 16. There is circumstantial evidence that Percy Rayford died from AIDS complications in 1966 at the relatively young age of 55. There is weaker circumstantial evidence that Sadie Rayford died from AIDS complications in 1966 at the age of 54.

It would be very interesting to examine 1950 and 1960 census records and see how many people east of Jefferson Avenue and north of Delmar Boulevard in St. Louis died in the mid-to-late 1960s at relatively young ages. Unfortunately the likelihood of any surviving medical records that would confirm this seems low. City Hospital on Lafayette Avenue, the most likely place for residents of this neighborhood to seek medical help, closed in 1985. The discovery of old blood and tissue samples to confirm beyond the shadow of a doubt seems even more remote. (Keep in mind the 1950 records won’t be public until 2022 and the 1960 records until 2032.) Not all of the premature deaths would be AIDS-related but it would be possible to normalize and at least get raw numbers.

It seems possible to estimate how many people HIV and AIDS spread to in St. Louis in the 1960s at some point in the future, but it will be, at best, only an estimate.

So why did it escape attention, and why didn’t it spread further?

Most heroin that got to St. Louis in the 1960s wasn’t very potent, so it wasn’t terribly addictive. This would have kept the use more casual than it would have been on the coasts, where the heroin tended to be more potent.

Diseases that kill their host have a harder time spreading by their very nature. The disease has a limited amount of time to spread to someone else before the host becomes too incapacitated to spread it further and dies. The presence of other STDs in the mix closed that window even faster.

There was also a peculiar set of socioeconomic conditions in Robert Rayford’s St. Louis. These families lived at or below the poverty line, so they didn’t have the means to travel and spread the disease far beyond their neighborhood. St. Louis was and is very segregated along racial and economic lines. Gaslight Square’s popularity broke that barrier for a time. But it happens that Gaslight Square went into sharp decline starting around 1966. This shut off the flow of outsiders with means who might come in to the neighborhood and be exposed to HIV. So the disease stayed relatively isolated, never gaining the opportunity to become a pandemic.

The socioeconomic circumstances that made HIV possible in St. Louis in the 1960s also limited its spread.

New York in the mid 1970s had a bigger drug problem and a larger, more promiscuous population to jump into. That population was also in better position to seek medical attention and potentially live slightly longer.

How did Robert Rayford contract HIV?

Barnes Hospital, St. Louis

Robert Rayford also received treatment at Barnes Hospital in St. Louis before transferring to Deaconess.

I’m not the first person to say this, but it disturbs me a bit that most of the material about Robert Rayford forgets that he was a human being. He had the first documented case of AIDS in the United States. But much of what’s out there about him is speculation.

Some people assume he must have been a prostitute because he had multiple STDs. But everything he had can be transmitted through needles as well. It’s one possibility of many, and there are other, more likely possibilities based on what we know.

His grandfather having the same symptoms points to other possibilities.

Robert Rayford’s autopsy showed no signs of drug use. However, it did suggest his infections happened through sex, whether it was abuse or consensual sex with other males. Psychologically, the abuse scenario seems like a distinct possibility. It’s also possible, as I said before, he contracted HIV by helping his grandfather. The two events could have been independent.

It’s tempting to turn Percy Rayford into the villain. The problem with that is we know even less about Percy Rayford than we know about Robert.

We can only speculate on how Percy Rayford got the disease. Perhaps he or his wife contracted HIV by helping someone else, then passed it to each other. The other two possibilities are an extramarital affair or drug use. Since Sadie Rayford died after Percy Rayford, it seems more likely that Percy Rayford passed it on to her, rather than the other way around.

Since the average drug user in the 1960s was 16 and Percy Rayford was in his 50s by then, drug use seems to be the least likely scenario. But heroin was present in inner cities in earlier decades so we can’t eliminate the possibility he had used it when he was younger and relapsed late in life. Percy Rayford died at City Hospital and had an autopsy, but that’s all the insight his death certificate gives. Unlike Robert, neither Percy nor Constance were diagnosed with anything else, and a doctor wasn’t present when either died.

Did Percy Rayford spread the disease to others? That’s a common question. Another common question is whether Percy Rayford had any sons, and what happened to them? I located two. Percy Rayford Jr. died in 2012. I don’t have his birth year but he was the older brother, so he likely was in his 70s when he died. Gene Rayford died in 1971 at the age of 32. He died relatively young, five years after his parents and two years after Robert, but we know nothing else about him.

It’s rather likely that Robert Rayford’s doctors have information that isn’t available publicly. Dr. Memory Elvin-Lewis, one of his doctors who saved blood and tissue samples, has said she thinks she knows how Robert Rayford contracted HIV, but has not stated publicly.

With only circumstantial evidence, in my non-expert opinion, the abuse scenario makes the most sense. His abuser was not necessarily a family member.

Whatever the circumstances are, it seems unlikely there were three and only three HIV-positive individuals in St. Louis in the 1960s. Most likely the virus spread among a few individuals through a combination of drug use, sexual intercourse, and possibly exposure to infected blood, but we’ll probably never know for certain who infected whom and how. The opportunity to learn most of what there was to learn slipped away decades ago, before we even knew what questions to ask. It’s very possible that these early HIV-positive individuals died without seeking medical help, or sought medical health very shortly before their death, and at a public hospital with limited resources. Impoverished people leave very little trace of themselves after they die.

However we look at the community Robert Rayford lived in, it was an incredible string of misfortune for a community that didn’t have much in the way of good fortune.

The Aftermath

If Robert Rayford were alive today, he would still recognize St. Louis, but his neighborhood doesn’t much resemble the place where he grew up. The apartment buildings he knew aren’t there anymore. Modest but more modern amenities stand in their place now. Today you can safely assume each family has its own bathroom. The lone picture I’ve seen of the building where Robert Rayford lived suggests the possibility that wasn’t the case in the 1960s.

The redevelopment had a side effect. It displaced people who had lived there for decades. Whether the people it displaced are better off now than they were 30 years ago is another question.

Robert Rayford made national headlines in 1987 but quickly vanished. In 1987, most everyone believed AIDS was a recent development. News that someone died of AIDS in St. Louis in 1969 shocked everyone. For any number of reasons, the story quickly faded. Right about the time Robert Rayford hit the news, the popular book And the Band Played On by Randy Shilts came out. Shilts’ book introduced the world to Gaëtan Dugas. There are any number of socioeconomic reasons why people were more comfortable with Dugas’ story than Rayford’s.

But there are practical reasons too. Dugas kept a diary, shared a lot of information with doctors, and knew a lot of people. Rayford said little. Good journalism answers six questions: Who, what, when, where, why, and how. Rayford only ever answered two. We know who and what. When and where are vague.  Why and how are still mysteries. It’s difficult to tell a story when you only have 2/3 of what you need.

AIDS remains a bigger problem in inner cities today than it is for people with more affluence. It didn’t take in 1966, but it was back with a vengeance less than 20 years later and hasn’t left since.