Lessons from My Second Great Pandemic: What HIV can teach us about COVID-19.
That sinking feeling is back. It has been a long time, but I recognize it immediately. A mixture of fear, anger and resignation. Dark clouds have formed over the world, and we can only wait until they pass on their own time. It is that sad understanding that humans are fragile, ignorant creatures and often incapable of doing what is best. There is a sense of an impending disaster that will claim millions of lives, but no one will really notice. But there is also a silent reassurance that some future benefit will come out of this tragedy. It has to.
For many gay men of a certain age, this is a familiar feeling. One that brings us back to the first great pandemic in our lifetime: HIV. Of course, HIV and COVID-19 are two very different diseases in terms of their mortality and transmissibility. However, the way America is reacting to the recent COVID-19 pandemic is eerily similar to the way the HIV epidemic was treated in the 1980s.
You can’t see what you aren’t looking for
It starts with denial and government indifference. HIV made the scene in 1981 but no one even noticed. It is a well-known fact that the president at the time, Ronald Reagan, did not even utter the word “AIDS” until 1985, when 5,000 people had already died in the U.S. There is a well-documented recording of a press briefing where a ridiculed reporter asks the White House about their concern about the newly discovered, “Gay Plague” as the AIDS epidemic was initially known. The laughter from the people in the room is haunting. No one paid any concern. Terms like “The Gay Plague” and “Gay Cancer” were titles that were simply too ridiculous to believe. So no one did believe it.
The plethora of opportunistic infections that AIDS patients suffered also made it very difficult to focus on a single cause. Kaposi’s Sarcoma, a rare form of skin cancer, was one of the most common outward symptoms. But there were other infections such as pneumocystis pneumonia, cytomegalovirus or toxoplasmosis that were just as deadly but not as outwardly evident. There were also two schools of thought at the very beginning of the plague: one school that focused on a single virus as the cause, and another school, the so-called “multifactorial” school, which posited that the breakdown of the victim’s immune system was the result of various viral infections over time. Years would go by until the HIV virus was eventually identified as the cause of AIDS; a critical discovery bogged down by the competing egos of researchers in France and the United States.
Egos and myopic thinking also got in the way of an effective initial response to the COVID-19 epidemic in the USA. You do not have to look hard to find the video clips of President Donald Trump minimizing and even denying the spread and potential impact of COVID-19. The messaging from the White House was incoherent and incompetent as they struggled to accept the new reality. Thousands of people had been infected and died before the administration finally started to take the pandemic seriously.
Half-truths are often worse than lies
The initial denial and ignorance about the scope of the disease only fueled the conspiracy theories. The Trump administration adamantly referred to the disease as the “Wuhan virus” or the “Chinese flu” in order to try to pin blame or tie the disease to a particular location. This has spun a number of conspiracies that the disease was intentionally manufactured by Chinese scientists in a lab, or at a minimum, a result of poor safety precautions that allowed its escape.
Conspiracy theories about AIDS were also widespread during the initial outbreak. There were many in the gay community that were convinced that the disease had been manufactured by the CIA or some other government player to try to quell the newly empowered gay rights movement. Such nefarious intentions did not seem completely out of the ordinary for a demographic under such intense social vilification. Calls from politicians and pundits to quarantine or even tatoo people with AIDS were well received by the public.
Common to both diseases is, of course, the dismissive conspiracy that the disease is actually nothing but media hype. That things are not really as bad as they seem and that the reports should be dismissed. Fundamental human desire to avoid painful truths creates these type of denialist conspiracy theories, and blaming an amorphous “media” is an easy scapegoat.
Oddly enough, increasing media exposure fosters both dismissive conspiracy theories as well as panic about the disease. The latter is particular the case once celebrities are involved.
Imaginary friends can appear real
There were a number of celebrities that initially contracted COVID-19 including Prince Charles and the British Prime Minister Boris Johnson. Stateside, the celebrities included actor Tom Hanks, newscaster Chris Cuomo and even the republican senator from Kentucky, Rand Paul. In Canada, the Prime Minister’s wife Sophie Trudeau, also suffered through the disease. Depending on your perspective, the timing could not have been worse or better in terms of media exposure.
For HIV, it wasn’t until Rock Hudson, “America’s leading man”, revealed that he was dying of AIDS, that America took notice. Humans only react to problems if they directly affect them. Or if they happen to somebody that they know. And even though celebrities make up a fraction of the population and live lives far removed from ordinary citizens, many people feel that they “know” the celebrities who turn up on the TV in their living room on a weekly basis. It is the closest thing they have to making the disease relatable. Paradoxically, when a celebrity gets sick, it makes the public feel as if anybody can get sick — including themselves. Panic ensues.
Every action has an equal and opposite reaction
When panic ensues rationality is the first victim. All of the forces of conspiracy and denial go into overdrive. Like a pendulum, as people become more convinced of the spread or danger of the disease, more people become convinced that the spread or danger is overblown. People do not like to experience pain or fear, and they will go to great lengths to create theories that will prevent them from feeling any.
Images of overloaded hospitals and mass graves in New York City have been contrasted with doctors in California claiming that hospitals are empty of patients and filled with nurses doing nothing but making TikTok videos. Trump’s promotion of using an untested fish tank cleaner, hydroxychloroquine, to treat COVID-19 was hailed a both reckless by some and a responsible approach in the face of the fatalities by others.
Information about the scope of COVID-19 outbreak, the most vulnerable demographics, the disease’s symptoms and transmissibility, as well as the accurate mortality rate and proper prevention efforts has been contradictory and confusing.
At the beginning of the COVID-19 pandemic, the focus was on handwashing as a way to prevent the spread. Then, when it was discovered that the disease can remain active on surfaces for lengthy periods of time, came internet videos about properly cleaning groceries and common surfaces. Eventually, more information was discovered about airborne transmission, shifting the focus to using facemasks and keeping a safe distance between people.
COVID-19 also is particularly dangerous for people with “underlying conditions”. However, there is very little clarity in terms of what those underlying conditions actually are. As a result, theories have abounded that it only affects older people or will not affect younger people. Such theories then get challenged by tearful videos of four-year-olds suffering through the disease.
Sometimes too much information is a bad thing
With the “information superhighway” that is the internet, rumors and conspiracy spread like wildfire. It seems like every day there is a new one — that only gets debunked a day later. On top of that, the President of the United States has an entire network news channel devoted to spreading whatever conspiracy theory will remove him from responsibility, or put him in the most favorable light. The internet is a limitless pool of conspiracies only bound by the limits of human imagination.
But the same dynamic existed 40 years ago, when there was no internet. The internet at that time was known as “the rumor mill”. But once the general American public decided to panic, far-fetched explanations began to seem plausible. There was fear that HIV could be contracted by handshakes, toilet seats, or even mosquitoes. The number of potential transmission routes was only limited by the depth of fear of the general public. The fact that the disease was prevalent among a much feared if not maligned a social group only heightened the panic.
This was the case even within the gay community. Initial rumors linked the spread of AIDS with the use of amyl nitrate, so-called “poppers”, a party drug within the gay population. Once it was clear that the virus HIV was the primary cause of AIDS, and it could be transmitted through bodily fluids, there was still enough ambiguity to generate confusion. Was saliva a bodily fluid? How risky was kissing? What about coughing? Thanks to Republican Senator Jesse Helms, publicly-funded AIDS education efforts were prohibited from mentioning homosexual activity, causing more ignorance and confusion about the disease.
A plethora of miracle cures for AIDS came and went, including Suramin, Compound Q, Blue-green algae and the initial, “official” treatment — AZT among others. It wasn’t until 15 years had passed that the current antiretroviral drugs became available for treating HIV. But even then, people were skeptical.
People prefer simple answers to complex problems even when they’re wrong
In the face of such overwhelming and conflicting information, human beings do what human beings do: they draw their own conclusions. People tend to make up facts that reassure themselves in some way. They develop their own safety strategies to survive. And they cling to them desperately. It does not even matter if they are right or wrong, when a person has gotten to this point, and they are convinced of “their” facts, it is very difficult to change their mind.
This can be seen to some extent even now, as many members of the gay community who lived through the HIV epidemic still fiercely defend strategies such as condom usage and sero-sorting partners. They simply ignore studies showing a higher failure rate with condoms vs. prophylactic medications such as Truvada, and that HIV positive persons with undetectable viral loads are less risky than people claiming to be negative.
Sadly, and perhaps ironically, it becomes increasingly difficult to educate the public about a disease the longer the disease has been around. People tend to cling to their own beliefs or rumors that they have heard. Trying to change those beliefs does not just solicit a defensive response, it often can elicit an angry response. This is particularly the case when the disease impacts a person’s actual living circumstances.
We can see this now with the current debate about social distancing rules and stay-at-home orders during the initial viral flood of COVID-19. It was easier to convince the public to stay at home for several weeks when people were initially panicking. But panic and fear only last so long, and the flipside the “fright” response is the “fight” response.
Context is everything
After two months of staying at home, people are angry, and they are using any information they find on the internet to justify their own perceived safety measures. Many may still strictly adhere to government recommendations for social distancing, but others may not. Face masks are becoming the new condoms that many forgo in the heat of the moment.
What gets lost in the rage is the context of the situation and potential solutions. People start to focus on the fact that they cannot get their hair done or dine in a restaurant, and fail to see that those are not critical human necessities, but rather luxuries. Many industries and businesses are still running as “essential services”.
Job losses and wages are clearly an issue, but people are not protesting for the government to provide more assistance in its budget than a check for $1200 for 10 weeks. Many of those who advocate opening up the economy are not necessarily interested in working themselves, as much as they are interested in having other people go back to work so that they can enjoy their regular, commercial life.
The fact that some hospitals in some areas are not overflowing with patients doesn’t mean there isn’t a pandemic. It just means the preventive measures are working. Buying time while testing and treatments get ramped up. It’s like moving to higher ground in a flood and complaining that your feet aren’t wet. But people only see what’s directly in front of them.
Similarly, even though HIV infection was almost certainly a death sentence during the first 15 years of the outbreak, that did not stop people from becoming angry at the impositions that the disease caused. These impositions were highly personal. It involved, of course, changing one’s sexual habits and predilections. And while many people may have made the changes necessary in order to survive, they were not happy about it.
In the public sphere, initial attempts by local governments to shut down bathhouses was even met with resistance by some members of the gay community. Gay bars managed to remain open, but the popularity of back rooms for anonymous sex and cruising for hook-ups on the streets outside dropped significantly. Ditto for poppers. The party atmosphere of the free-wheeling 70’s ended. It took several decades before the gay community was in any kind of celebratory mood.
“Can’t win-don’t try” is a self-fulling prophecy
There is unlikely to be any kind of celebratory mood in the near future in terms of the COVID-19 epidemic either. By all professional estimates, a vaccine is more than a year away. It is not nearly the 15 years that it took for treatment of HIV to develop, but in the psyche of the public, it is still a very long time. What we sense now is the period of resignation, and an acknowledgment that respite from the fear and anger is a long way away.
Those emotions are very difficult to sustain, and what creeps in is an understandable yet toxic emotion: apathy. There is nothing you can do about it, so why try? Just let nature take its course. As far as COVID-19 is concerned, it is easy to find more Darwinian voices calculating “acceptable losses” and arguing to simply “live and let die”. There are a few brave souls, such as conservative commentator Rush Limbaugh, who claims to be willing to take one for the team to save the stock market. Very few people are likely to join him in that venture, but there is a growing, unspoken assumption and acceptance that COVID-19 will disproportionately affect old people, poor people and brown people. And that the economic lives of younger, richer, whiter people should not be inconvenienced on their behalf.
Sadly, most people will not feel the real impact of COVID-19 until someone they know suffers from it. With 300 million people in the country, the United States could lose more than a million people, and that would still only be 1 out of 300 people. Not enough to actually prompt people to action. Until everybody’s neighbor is dying or everybody’s grandparent is dying, it is going to be much easier for people to accept COVID-19 and the ensuing casualties as an unfortunate fact of life.
It was even easier for the general public to dismiss HIV as a “gay disease” that didn’t need attention because they didn’t know — or didn’t think they knew — anyone who was affected. However, the queer communities were small enough that many people did know other individuals who died or suffered from the disease.
From the concentrated communities of New York City and San Francisco, activist groups like ACT-UP fought apathy and ignorance with the motto “Silence = Death”. Gays and lesbians outside of these gay meccas initially took uneasy reassurance that perhaps the spread would not reach them, but it didn’t last. AIDS, and consequently ACT-UP chapters, sprung up across the country.
A little courage goes a long way.
The anti-apathy forces prompted large numbers of affected and infected individuals to donate their time and bodies to help care for the sick and even conduct clinical trials to develop a cure. Indeed, the eventual antiretroviral therapies that are currently used to treat HIV infection are the result of activist groups who either helped prompt the public and private sector into action or provided trial subjects for the plethora of drugs being tested at the time. Without the brave efforts of individuals affected by the HIV epidemic, it is unlikely that the drugs that now keep so many people living with the disease alive would have been developed.
The courageous and cohesive response of many people within the LGBT community under such awful circumstances forever changed both society at large and gay and lesbian culture in particular. Besides the changes to the pharmaceutical industry, including faster approval of drugs, more ethical clinical trials and an awareness of holistic therapies, the HIV epidemic highlighted the importance of “patient-centered care”, innovative approaches to IV-drug use and the power of community support in assisting public health.
The AIDS crisis had clear legal implications that blossomed several decades later. The importance of valid, legal relationships between gay couples, i.e. gay marriage, became incredibly important as AIDS sufferers faced hurdles in terms of wills and estates, medical decisions, insurance and family visitation to hospitals. There is a direct line between the AIDS epidemic and the fight for marriage equality. Most importantly, AIDS forced many people out of the closet, and the response to the tragedy showed the basic humanity of the LGBT community.
If there is one thing that the COVID-19 pandemic has shown, it’s that all of humanity is in this together. Lost in the coverage of anger and apathy are the quiet moments of neighbors helping neighbours and the noisy racket of pots clanging in support of the first responders and medical professionals tackling this disease.
Every cloud has a silver lining, it’s just hard to see.
We have yet to see what the impact will be of the COVID-19 outbreak. However, there is clearly a heightened awareness of the interconnectivity of modern society and the dangers that this brings. Diseases can travel as quickly as a jet can pass through the sky. Information and disinformation can spread even faster.
The overabundance of information about COVID-19 has highlighted the importance of scientific literacy in society. As research articles fly around the internet, the importance of applying a skeptical yet open attitude to new information has become even more important. Science is messy and it takes trial and error, and if it seems too good to be true, it probably is.
Yet, it is important to recognize that “alternative facts” are not facts. Facts are based on evidence, and there is a big difference between conjecture and consensus. Citing anecdotes is not scientific analysis. Allowing data to drive decision-making and relying on evidence instead of ideology to guide public policy will become not just obvious but instrumental.
Most importantly, will be the recognition of the importance of a strong governmental response in the face of pandemics. The public may eventually realize that governments actually can serve a purpose. Calls to limit or even eliminate the role of government in society will fall on deaf ears as the population mourns the loss of family and friends as well as the loss of the economy. At the heart of civilization is civility and compassion.
In the United States, the relative random nature of COVID-19 infection highlights the need for easy access to healthcare for all citizens. Medical emergencies are not a failure of individual preparedness, but the result of natural forces that cannot always be predicted. Unprotected citizens only endanger the lives of other citizens. Making sure you don’t get sick only ensures that I don’t get sick.
The recognition of this interconnectedness spans the globe. No longer will unusual outbreaks among ostracized communities or in far-flung localities be cavalierly dismissed. International collaboration is the only way to ensure the safety of the global community. The health, safety and prosperity of every global citizen supports the health, safety and prosperity of every other global citizen. Prosperity is not a zero-sum game. Calls for the dismemberment of the “globalist economy” in the name of economic nationalism will not result in prosperity for individual countries. It will result in a return to the poverty and plagues of the pre-industrial era.
The hope is now that we are smart enough to realize these lessons before it’s too late. And that’s a sinking feeling…