On HIV-related Trauma and its Erasure Through Cultural Response to COVID-19

Entering our collective seventh month of quarantine in the COVID pandemic, I’m realizing that I’m having a lot of HIV/AIDS-related resentment towards the pandemic at hand.

This is the HIV virus — not COVID-19.

Call this time-displaced survivors guilt, or the reverbs of generational trauma: it bothers me deeply the certainty with which I know I would have been hit hard by AIDS had I lived in SF in the late ‘70’s. On the other hand, I almost certainly will not die from COVID, but am being asked to respond to it in ways that governments did not and still do not ask us to respond to the HIV pandemic. This is salt in the wound of erasure and under-reaction, and at the same time the trauma from AIDS swells up and clouds thinking about COVID — because we are policing each other and have been for the past seven months.

If you were like me in many ways, you would have almost certainly contracted HIV had you been in my twenties circa the ‘80’s. You would have been drawn to San Francisco like a glow on the horizon, allured by the freedom and liberty/safety that it offered. In the early days, we didn’t know how HIV spread, and had less of an idea of how to treat it. You could have gotten progressively more and more ill, developing kaposi-sarcoma, wasting away. You would have slipped into a category of quiet stigma, and could have died young in any number of ways: internal bleeding, pneumonia, vomiting, etc.

Most of your friends would have caught HIV and died of AIDS whether or not you did. An older acquaintance, who I would socialize with a tight group at Harvey Milk’s camera shop, said that only two of his friends from the time period are alive today. He said it was like going through a war, except no one called it that; men died off one by one who should have been lifelong friends. 40 years later, one could hear the trauma in his voice. Sarah Schulman writes that HIV taught her to “get good at showing up to funerals”; to know when to call a friend, to learn how to help everyone around you deal with the tragedy. In “Pose”, a TV show about the 80’s Harlem ballroom scene, two friends make light of the number of friends’ funerals they’ve attended by comparing counts: ~250 and ~400. That’s not something a young person should have to learn how to do. That’s also not something COVID is teaching us; call me extremely lucky and extremely white, but I don’t know a single person who has died and very few who have even contracted it.

Your lovers would have died. Kevin Benson, in “Wild Animals I have known”, writes about meeting the love of his life, who then dies of AIDS. He goes on with life, dealing with the loss, and then eventually meets the second love of his life. That man also dies of AIDS. He writes a poignant and vivid scene of finding a gift the second lover had left him in the bottom drawer of a dresser. He’s not sure if his lover intended to leave a posthumous gift or got ill and died before he could give it to him. Love during the spectre of AIDS isn’t something a young person should have to deal with; wondering if a cheating lover or a broken condom would result in a deadly disease isn’t a fair mental exercise.

But you don’t even have to imagine the past very much to communicate the vague, weird fear, the nagging sensation of having missed a tragedy and caught the after-ripples: AIDS would affect you in the present day! Its effect in poorer and darker communities is much more severe, but even here in well-to-do white gay SF, most seronegative people take a daily pill that prevents HIV transmission. We don’t really know the long term effects of the pill; it could cause liver or kidney damage. Many of my friends are HIV+, and as far as I know, most are undetectable (and therefore untransmittable) but their serostatus will likely require some degree of medical focus for the rest of their lives. There are medical unknowns: we don’t yet fully understand the so-called cranial reservoir of HIV, which is beyond the blood brain barrier, and other reservoirs that seems to persist even after undetectability. The cranial reservoir could be why HIV+ people are at higher risk for dementia. All of these are some level of direct physical effect…. Forty years after the HIV/AIDS epidemic hit.

Straight people may not know the magnitude of AIDS epidemic on the gay community. The intuition that COVID has furnished us with is a disease that has a .2% death rate overall in my age category, and 15% in the oldest, most at risk categories. However, from 1981 to 1987, of all of the ~50,000 AIDS cases in the US, ~47,000 died. That’s over a 95% fatality rate: if you contracted HIV, it was a slow and painful death sentence. 92% of those fatalities were men; likely mostly gay and bi men, and trans women. ~75% of these cases were men between the ages of 25–40; plenty of life was left unlived.

AIDS ruined life plans and decimated gay culture. I think all the time about how our present could have been if not for the concentrated burst of death from HIV, what our community could have done with a generation of leaders and people, what networks or lineages of chosen families would have formed and persisted, how land trusts could have been established and gay neighborhoods cemented. When I came out to my parents, their main reaction was fear for me and my HIV serostatus — showing the extent to which it eclipsed views of the gay community. All of our art of the next decade was spent trying to understand and process the catastrophic loss.

Government inaction on HIV/AIDS, truly, was staggering. HIV/AIDS likely started spreading in the US in 1978–1979, and a case was formally diagnosed in 1981. Until 1985, i.e. six to seven years after the virus started spreading, the President of the United States of America would not even say the word “HIV”. Forget the silly mask nonsense that Trump fusses up about; Reagan wouldn’t even address the fact that we were dying at all. With swift action (i.e. a few months) the government could have quarantined and contact-traced all ~500 HIV positive men and prevented this from spreading further. Larry Kramer, in his searing 1984 essay “1112 and Counting”, slams NYC Mayor Ed Koch for ignoring dying NYC homosexuals for political gain. Even more crucially, for four years until 1983, Congress didn’t direct any public research money towards the disease. The government wouldn’t promote any kind of preventative behavior for nine years until the CDC’s 1987 America Responds to AIDS public information campaign. Churches saw AIDS as a cure for gays in society; they advocated against using condoms even when they were proven to decrease transmission. We had to develop some of the most innovative, most aggressive direct activism that the world had ever seen (ACT UP, Gay Men’s Health Crisis, etc.) in order to spur research on HIV/AIDS.

Even today, marginalized communities continue to suffer from other diseases that could be easily eradicated if governments put appropriate value on human lives (and large pharmaceuticals saw profit in treating them) — diseases like TB, malaria, etc. Diseases are, like Ebola, treated aggressively only if there’s a risk of it spreading to the non-marginalized community. In the US, poor, gay communities continue to suffer from the highest rates of HIV in the world. The US and broader scientific communities has not learned from it’s failures and continues to ignore diseases that do not affect its power brokers.

The world scientific and medical community, meanwhile, has within months furnished the world with a wealth of rich scientific information, understanding, and discovery on COVID. We have approved numerous ways to reduce the fatality further: ventilators, remdesivir, dexamethasone, various amino acid treatments, etc. We have extensively modeled the spread of COVID and effects of public health guidelines. We understand its morphology and lifespan in an array of conditions. I know many of these first hand: as part of Ph.D. work, I help rapidly review scientific preprints for COVID, and every week there are dozens more articles submitted rounding out our knowledge.

To me, in this comparative light, the magnitude of the COVID response feels unfair to the point of it being social hysteria. Whether this is over-reaction to COVID or under-reaction to HIV/AIDS, I can’t say, but we absolutely must acknowledge the disparity. I believe COVID’s response is due to the fact that it can happen to any group, no matter how privileged; heads of state have gotten COVID, families have contracted COVID. And my heart goes out to those who have lost loved ones to the disease. But, unlike HIV, COVID precautions probably end some time after the vaccine and for many of us, it will feel like a bad memory. HIV hasn’t ended (no vaccine.)

As an academic statistician, I have (I believe) a unique perspective on the ways we, the general, public understand disease. The metrics we use to characterize it: fatality rate, communicability, caseload, etc. — are just statistics; i.e. numbers. To quote George Box, “all statistics are wrong, some are useful.” How we deal with this uncertainty and translate numbers into emotional facts depends a lot on cultural context and normative reasoning. How scary a disease appears is very subjective. Yet how scary a disease appears dictates how we hold ourselves and others accountable for actions surrounding the disease. A large disparity I intended to point out here is the perception of risk that exists between COVID and other diseases, namely HIV.

With that disparity in mind, the social policing of COVID precautions in the present time feels like a bad trap one cannot get out of. Everyone in SF expects some level of reverence to a series of CDC guidelines that persist from the very early days, when we really didn’t understand the science of COVID. The initial social distancing guidelines were so simple that they couldn’t possibly be right. And they aren’t: they’re based on outdated and inadequate science. Indeed, from MIT, social distancing isn’t necessary depending on mask and being outside. It’s partially why the BLM protests were not super-spreader events. I see many forms of social policing; of people insisting on masked social distancing, of using this epidemic as an excuse to shame others and to judge, to sever friendships when we need them the most. This behavior goes beyond eye-rolling: it feels like active gaslighting, because I am consistently and repeatedly told to perform a far higher level of precaution than the world would have shown to me at the same time period during the HIV/AIDS epidemic.

A figure from this article about levels of risk. I think everyone should stay within low risk settings when possible.

To the people reading this, I say: wear masks, socialize outside, take the proper precautions, keep yourselves and others safe; but put COVID in perspective. COVID is not the worst epidemic that communities in the world have faced. Don’t police others. Use this as an opportunity to increase your compassion and empathy of what others have been through and fought for.

To the gays reading this, I say: don’t participate in this act of erasure. Please be more reasonable and less afraid, and considering lessons from HIV, don’t participate in shaming or policing others over COVID behaviors. Understand “harm reduction” and what it means for an HIV context. Knowing that wearing condoms and taking PrEP can drastically reduce spread, crucially, reduces the extent to which a disease feels like anathema to a community. Understand harm reduction practices for COVID response, and stay within low risk settings. Educate yourself on the set of actions which would reduce contagion (wearing masks, staying outside, etc.), and consider the broader set of actions that would eliminate it completely (quarantining continuously, insisting on masked social distance outside, etc.) Decide for yourself what the tradeoffs of acting anywhere between those specific bounds, and understand that others might have a different tradeoff calculation. Honor the memories of our ancestors by continuing the fight against HIV, and use that to fuel a reasoned engagement in the chosen familial bonds that predate COVID. Don’t flush the active community that we’ve built over the years down the drain because you’re caught up in the fears of the moment. We’ve survived a lot worse than this, together.

Acknowledgements: Many, many thanks to Justin Lippi for their insightful and pragmatic edits, given despite them not entirely agreeing with the whole argument presented.

Equal thanks to my brother, Alex Spangher, for his thoughtful additions.

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