Contact Tracing: Lessons from the AIDS Era for Our World Today
“Harvey told me to find a bow tie for a preppy. I hope you like it. Thank you for taking care of him. He really liked you.” –Mrs. K. May, 1987.
90,000 died in the U.S. 90,000 Americans died of AIDS before life-saving treatments became available. First it was gay men, then people who were addicted to injectable drugs who shared needles, and finally people requiring transfusions who were unknowingly infected by blood contaminated blood products. All from a novel virus that seems to have “jumped” to humans from another primate. 100% mortality.
90,000.
Now to be sure, AIDS is a manageable chronic diseases treatable with a pill in the U.S. (and most developed countries), but it still kills–what?–a million people worldwide. Some of that is due to a lack of access to a diagnosis, and in those 3rd world countries where the diagnosis can be made there is a lack of access for a number of reasons to the effective treatments. In those cases AIDS is still 100% fatal. If a diagnosis can be made an AIDS “hotspot” can be cooled, if not extinguished, through a variation of something we are now all becoming quite aware of, contact tracing and physical distancing. Sadly, in many of those 3rd world countries where AIDS is still endemic, these very basic public health interventions contravene unalterable societal norms and culture; the virus spreads and people die.
What does this have to do with us today as we address a new, novel virus that as of yet has neither cure nor medical prevention in the way of vaccine? I’d like to share a little history from the earliest days of the AIDS crisis in America, and a little story about my own experience as a young doctor just starting my career in medicine. Let me first be very clear about my place in that history. I am a straight, cis, white male born at the tale end of the Boomer generation. At no time in my life have I felt the sting of real discrimination based on either something I am, or something I am presumed to be based on what I look like, what I do, or who I am (my father did face discrimination as a Catholic, something which was largely a historical remnant but the time I came of age). As such my story and my thoughts about both what it meant to be gay in the 80’s and the possible impact of contact tracing in an epidemic or pandemic are sympathetic, based on observation, only.
Looking back my first encounter with anyone I could say I knew was gay was in the first week or so of my freshman year in college. The phone rang in my dorm room (landline, rotary dial, no caller ID), and the caller addressed me by name and asked if I was gay. As I recall I laughed a little, thanked him for asking, and said that no, I liked girls. That was it. He said thanks and hung up. Now of course as a child of the 60’s and 70’s I had most certainly come across many gay men by the time I’d made it to college, I was just clueless to this fact. There was a teacher in high school who was “outed” by a couple of kids from school after I graduated; they saw him coming out of a gay bar in Providence one night. That was pretty much it.
For the most part I just ignored the fact that there were gay men (and looking back, women, of course). Without really thinking about it I guess I figured that if I was indifferent to this part of my college mates’ lives then pretty much everyone else must be, too. It never dawned on me that being gay might have very real, very serious consequences when it came to very normal stuff like getting a job. I was totally clueless, in reality to most things that didn’t have any direct impact on stuff happening inside my own personal little navel-gazing bubble. Like everyone I kinda knew who might be gay, but again, I was indifferent. Even during a year when what it meant to be gay on campus was the year’s issue the only time I really paid attention was when one gay male student was interviewed on the college radio station about being attacked for being gay by a fellow student chasing him with a machete. And only then because the machete-wielding student was one of my close friends taking out his anger at being dumped by a girlfriend by swinging his sword at the squirrels along the driveway.
For the record neither the shaken (but mistaken) young man nor a single squirrel was harmed in the “attack”.
And then came AIDS. Those of us of a certain age recall that the initial publication was titled something along the lines of “Acquired Immunodeficiency in Homosexual Males”, I think first in JAMA if memory serves. I remember reading it in the med school library. Heck, I may not have even been out of the classroom yet. My presentation at the conclusion of one of my “away” rotations in ophthalmology was on the ophthalmic manifestations of this disease, soon to be re-named AIDS. As an aside I wrote that hemorrhages and focal areas of ischemia (cotton wool spots) were the signature signs of the disease, a statement that was shot down as incorrect by the retinal attending in the room. Turns out that I was technically right; hemorrhages and cotton wool spots DO result from HIV, while the entities that the professor pointed out were actually secondary opportunistic diseases. During my residency at NYU/Bellevue 50% of the inpatients on the medical floors would have full-blown AIDS. Every resident would become an expert in all things AIDS-related in and around the eye.
But it was in my internship in medicine at Rhode Island Hospital (RIH, a Brown University affiliate) that I would learn what it meant to be a gay man in America in the 70’s and 80’s. There were very few AIDS patients on the floors at RIH in the summer of 1986. I had one very special patient, Harvey K, who was on my service each time he was admitted that year. Openly gay, Harvey had been one of the earliest activists in the gay community, speaking out initially on issues of discrimination in general, and then as his life was upended by AIDS, speaking out while he could on the plague that had descended on his community. Harvey was unfailingly kind, generous, and understanding of his rather unworldly intern, cloistered as I was in my cis-straight world. He answered all my questions about what it was like to be a gay man in those days; he was brutally honest about everything, including some of the activities that led to rapid spread of HIV from a relatively small number of initial individuals who harbored the virus but did not yet have the disease.
This is the part of what Harvey taught me that applies, at least superficially, with where we are today. In its earliest phases AIDS was a disease transmitted almost entirely through sexual contact. Public health strategies to address this kind of disease propagation had been pretty standard for decades by the time AIDS arrived. Once a diagnosis was made a detailed list of contacts was then assembled. These people were in turn tested to see if they had the disease, were treated, and their contacts were similarly identified for follow-up. Similar tactics were used in the early days of TB as well, even though TB (unlike diseases transmitted by sexual contact) was not as easily and successfully treated with antibiotics. Harvey gently pointed out that yes, contact tracing could indeed prevent an infected individual from passing on the virus, and it could also alert his contacts that they were at risk to acquire the disease. The disease was fatal, but that was only one part of the issue.
Since only one small segment of society was affected AIDS at that time, being identified as a contact meant being identified as being gay.
Remember, this was in a time when being identified as a gay man had very real consequences. Not only could it affect your employment, but it is reasonable to say that the majority of gay men were not “out”, either publicly or privately. Nearly every major religion openly rejected these individuals, and more than half of the states in the U.S. still had laws on the books essentially making it illegal to be gay. One of the very first protest movements organized by the new gay activist organizations was to stop AIDS contact tracing before it started. As a newly minted physician, enthralled with science and quite sure that standard public health initiatives were mandatory to treat this new epidemic, it was left to my patient Harvey to teach me about the reality of large-scale medical intervention on vulnerable populations.
As we fast forward to our world in these days of the Corona virus and the varying degrees of societal “treatment” applied at the federal and state levels it is first necessary to be very clear that being told that you cannot go to work if you had contact with someone who is test positive is not the same as being told that you have been in contact with someone who had AIDS in the 80’s. Not by at least one or two orders of magnitude, not. That’s kinda like saying being Catholic in the 70’s was the same as being Black. Again, not the same.
But one thing that Harvey taught me is the same. People who are in the contact strand are afraid of more than just the disease itself. They are also afraid of what having the disease, or even being associated with the disease will do to their life. Will they be able to go to work? Feed their family? Whether or not they do get the disease will someone tell them who they can see, where they can go, and what they can do? For better or for worse there are an awful lot of misunderstandings about COVID just like there were about AIDS. If they are are identified as a possible COVID risk will people think differently about them? Remember, unlike the gay men of the 70’s and 80’s who had decades to thicken their skin and steel their psyche against these kinds of feelings, the people who will be tracked now (most without the knowledge that they are being tracked, or have triggered a tracking tract) are experiencing this for the very first time.
Again, the true consequences are small, one or two orders of magnitude less than that faced by gay men in the earliest days of AIDS. But I’m sure that Harvey, as gentle and kind and understanding as he was despite his reputation as a fiercely powerful activist before he became ill, I’m sure Harvey would suggest that we seek to understand why people may rebel against contact tracing today. Just as surely as he would then go on to teach anyone who would listen (and eventually those who came after Harvey taught everyone to listen), that this is different. That we do not have the same concerns that Harvey and his friends did back then. While we can certainly discuss how it would be done and how consent would be given, Harvey would say that in this instance the population that is vulnerable will only be helped by “by the book” public health measures.
Harvey and I became friends of a sort. He needed some really terrible things done to him while he was in the hospital and forgave me each time I had to do one of them. I spent a lot of time just hanging out with him when I was on call. He was very, very smart, and every story he told was one that I would never have heard in my life to that point. As I said above, he was very understanding and kind. I’ve written many times that I’ve tried to live a life without regrets, never looking back at decisions and wishing that I’d done something differently lest my life be altered today by that change long ago. You know, the Butterfly Effect. When Harvey was discharged for what we both knew would be the last time I told him that I wouldn’t visit him at home; I wanted to remember him as he was that day. Still handsome. Smiling. Well enough to be happy he was leaving. I told him I didn’t want my last image to be what we both knew was coming. In retrospect I wish I’d had more courage, for I’d very much have liked more time with Harvey. I know I shook his hand, but I can’t remember if I hugged him.
I still have the tie.
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