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.

The Last Night Before AIDS

If you are my age, or a little older, you can clearly remember a time when most of the world--and, probably, you--didn't know about AIDS.

The "beginning" of the epidemic is often placed on the 5th of June in 1981.  On that day, the Center for Disease Control released its report documenting five young gay men who were treated for pneumocystis carinii pneumonia in Los Angeles hospitals between October 1980 and May 1981.  On the day the report was released, two of the men were dead.   

The reason why this mini-outbreak of pneumocyctis carinii was seen as so significant, even unusual, at the time, is that nearly every recorded case of PC developed in people with compromised immune system.  That meant most of those afflicted with it had been, up to that time, elderly, suffering from some condition that compromised the immune system or were taking medications--or abusing substances--that weakened them.  The patients in the report were described as "previously healthy"; the oldest of them was 36 while the youngest was 29.  So they did not come close to fitting the profile of previous PC sufferers.

At that time, I was living some semblance of a straight male's life.  By that time, I'd had relations with two males; the rest of my romantic/sexual life, such as it was, involved females.  So, not many people would have described me as being part of the gay (nobody was calling it LGBT) community.  Still, I knew more gay men and lesbians than most other people I knew and had heard stories about the "gay cancer" before the CDC report was released.

Still, I didn't think much about it.  Part of it was that I wasn't really gay--which, by my definition, meant that I had nowhere near the number of male partners as some gay men I knew.  Also, I suppose I had some of the arrogance of the young:  I didn't think it would happen to me or, by extension, anyone I knew.

Well, a couple of weeks after that report was released, I went to a party held at the house my closest friend (a woman) at the time shared with another woman and two gay men.  We were all students or recent graduates of Rutgers and some of our friends and classmates attended this party.  

It would be the last time I would see most of them.  Of course, some of us simply drifted apart, as people often do after graduating or leaving school.  But four other people--including my first roommate at Rutgers-- would die within the following decade--from HIV, of course.

But none of us were thinking about it then.  Nor were very many other people 

To Old Age (Or, More Precisely, Getting There)

"Well, gays in San Francisco do not obey the dictates of good sense. [...] First, these men don't really see a reason to live past their fifties. They are not married, they have no children, and their lives are centered on new sexual partners. These conditions do not make one's older years the happiest. Second, because sex is the center of their lives, they want it to be as pleasurable as possible, which means unprotected sex. Third, they enjoy the attention and pity that comes with being sick."

Where did I find the above quote?  Well, all right, I found it on Wikipedia. (Shh...Don't tell anybody.) Actually, I remembered seeing it somewhere, but I couldn't recall where or when.

It came, not from the early days of the AIDS epidemic or any of the earlier Dark Ages. Rather, it's of recent vintage--twenty years old, to be exact.  It came from the 5 January 1994 Ron Paul Survival Report.

Now, I won't get into a discussion of Mr. Paul's fitness for public office, let alone the Presidency. But the quote that began this post reveals not only his, but a very common, perception about gay men--and, by extension, LBT people.

None other than Larry Kramer condemned the sexual habits of gay men during the '70's and '80's in language not much different from Ron Paul's.  The first gay men I knew (at least, the first who revealed their sexuality to me) were indeed more sexually active than anyone else I knew up to that time, or most people I've known since.  However, it was a time when many gay men--as well as lesbians--came "out of the closet."  And, like anyone who has been released from bondage, they wanted as much of the very thing they'd been denied.  Also, to be fair, almost no one had heard of what would come to be known as AIDS, let alone the ways it was transmitted.

Still, it's disturbing to read comments like the one from Ron Paul.  If anything has an impact on the life expectancy of LGBT people, it's homophobia.

At least, that's a conclusion of a new study.  When you think about it, it makes perfect sense: LGBT people in accepting communities live (on average, 12 years) longer than those in intolerant environment.  And, until recently, homophobia was everywhere.  In fact, people who abhorred racism and sexism held anti-LGBT attitudes, often unconsciously.  I was one such person.

Before the AIDS epidemic, one didn't see many older LGBT people. Of course, during the epidemic, many died young.  But those who survived are embarking upon old age, and many of us have a better chance of doing so than we might have in the old days. 

Still, even in the most tolerant of environments, we face the hazards of homophobia and the terrors of transphobia.  People are harassed, beaten and even murdered right here in New York for their actual or perceived sexuality or gender identity.  So, while more of us are becoming members of the AARP, there are still things that have just as much chance of claiming us.  And they can't be changed by medical science.  Rather, we have our best chance of living long, fulfilling lives as the human spirit grows and expands.

 

Upon This Rock Was The Movement Founded

Although people became ill and died from it long before then, the first documented cases of what would come to be known as HIV/AIDS were reported on 5 June 1981.

For the next four years, the mushrooming epidemic was depicted as a consequence of the libertine lifestyles of gay men and the poor choice others made to use intravenous drugs.  Anyone who contracted the disease was thus tarred with the most negative stereotypes about one or the other; family, friends, colleagues and others often abandoned those who were wasting away and dying from the ravages of the disease.

It was a time when many--including then-President Ronald Reagan--would not speak of AIDS, at least not publicly.  To do so, at a time when the so-called Moral Majority was at the peak of its influence, would be to identify one's self with immorality, degradation and sloth.

Then, on this date in 1985, something happened that began the change in public perception about AIDS and its victims.

If you are around my age, you remember it well:  It was announced that iconic actor Rock Hudson was suffering from the disease.

Earlier in the summer, rumors about his health began to circulate when he looked gaunt and pale--almost unrecognizable--during an appearance to promote a new cable series of his longtime friend and former co-star Doris Day.

He was diagnosed with the disease after collapsing in Paris in early July.  There, he was able to receive treatment with HPA-23, a drug that wasn't available in the US at the time.  The announcement that he indeed had AIDS came while he was in the hospital.

Rock Hudson changed the "face" of the disease, not only because he was so famous, but also because, until then, very few people knew that he was gay. Ironically, his character "feigned" gayness to get the character played by Doris Day in Pillow Talk:

 


He died on 2 October 1985, less than three months after his announcement.  In that short time, he started the Rock Hudson AIDS foundation.  He was also credited with jumpstarting Elizabeth Taylor's then-nascent fundraising crusade to fight the disease.

Most important of all, his illness and death inspired, in some people, a willingness to be associated with AIDS victims, which probably did more than anything to bring the fight against the disease into the mainstream of society.