16 May 2015

Robert Rayford: The First AIDS Victim In North America?

On 5 June 1981, the US Centers for Disease Control published its now-famous report describing rare lung infections in five previously-healthy gay men in Los Angeles.  This is commonly seen as the beginning of the AIDS era.

These days, just about everybody knows how HIV/AIDS is transmitted.  But no one seems to know for sure where it originated or why, in the US, its first victims were gay men and intravenous drug users.

What's also not clear is when the virus, or whatever causes AIDS, originated.  That question grew even more puzzling after the tissues of a 16-year-old boy who died on this date in 1969 were tested nearly two decades later and found to have been infected with AIDS.

At the time, he was known only as Robert R.  A few years ago, his full name--Robert Rayford--was disclosed.  He was born and died in St. Louis, far from the first clusters of the disease, and apparently never traveled outside the midwestern US. 

In 1968,  he checked into City Hospital with lesions all over his legs and genitals. He also complained of shortness of breath and fatigue, and claimed he had experiencing those symptoms since at least since late 1966.  

Those symptoms and the lesions and sores would come to be known as the hallmarks of AIDS.  The lesions and sores were particularly puzzling, as they were of the type known as Kaposi's Sarcoma which, until that time, had been found only in elderly men of Jewish and Eastern and Southern European ancestry.  Robert, in contrast was an African-American teenager.

Further diagnosis revealed a sexually transmitted chlamydial disease called lymphogranumola venerum (LGV).  It, too, did not respond to standard treatments and the chlamydial bacterium was found in Robert's bloodstream.  Up to that time, no one had ever found it in a person's bloodstream. 

Some believe that he was gay or bisexual, which the doctors who diagnosed and treated him wouldn't have known to ask.  He did admit to having sexual activity "with a neighborhood girl", though he wasn't more specific.  This has led to speculation that he was a child prostitute or was sexually abused.

Whatever the case, his condition deteriorated rapidly.  His whole body swelled with fluid.  Doctors tried all of the proven treatments for his conditions; none of them worked.  Most troubling of all, the infection spread to his lungs.

What all of this meant, of course, was a meltdown of Robert's immune system.  Even the timeframe of his illness and deterioration corresponded with that of early cases in the AIDS epidemic.  He also died in a way that was very typical of early AIDS cases:  from pneumonia contracted in his weakened state.

We all know that the early days of the AIDS epidemic devastated the gay male community:  Nearly all gay men in that time knew another gay man who died from the disease, and most of us who knew gay men also knew of someone who succumbed to the illness.  During the 1990s and in the early 2000s, the number of gay and bisexual men who contracted the disease fell dramatically, thanks to awareness campaigns and better treatments. But the numbers began to pick up again.  Some blame complacency; others point to the fact that most of the new cases were young men who didn't come of age during the early days of the epidemic.

I have seen very little mention, however, of how much of a swath HIV/AIDS has cut through the transgender community.  At least, it seems that no one outside the community is talking about it.  Actual statistics are hard to come by, but when you realize that we have rates of unemployment and poverty far higher than those of any other population, it's hard not to think that we are one of the groups of people most affected by the disease. Also, too many of us have engaged in sex work simply to survive, and I would guess that we are also more likely to experience, or have experienced, sexual violence of one kind or another.  (How many rapists use condoms?)  Finally, far too many of us don't get the medical care we need, whether through lack of insurance or phobias developed from encounters with transphobic health care providers. Or we simply, like Robert Rayford, do not have a way of telling our providers what we're experiencing, and unless a provider has a lot of contact with gay and trans people, he or she simply wouldn't--as Robert's doctors couldn't--know what to ask.