9 Lessons Learned From the AIDS Crisis That Could Save Us Now
By: Gabe Zichermann
Tags: AIDS, Psychology, Covid 19, HIV, Coronavirus

9 Lessons Learned From the AIDS Crisis That Could Save Us Now

Sadly, the lessons are being ignored

Photo: Drew Angerer/Getty Images

I remember, as a teenager, first hearing about AIDS. It’s a foggy memory of a news broadcaster talking about Rock Hudson dying. And I remember not knowing who that was, but my mom was distraught, tears rolling down her face.

“Why are you crying, Mom?”

“Rock Hudson was such an idol of mine. I can’t believe he’s gay and has AIDS.”

It left an indelible welt on me that continued to grow and redden with every passing year, sexual awakening, and HIV scare. My dad (like myself, a gay man) kept his orientation secret from my mom during the early 1980s. By the end of the decade, they were divorced, and he was dating his now 30-plus-year partner. There is no doubt in my mind that the shame and fear of AIDS drove both of us to hide our identities.

HIV/AIDS has always been a fact of life for me. It killed some friends and maimed others. And for the rest of us gay and bi men — positive and negative — it has left lasting scars. Embarrassment about HIV prevents many of my friends from talking about their status, even now and even with a sympathetic person. The fear that you are going to die because of who you are is a powerful force, and it doesn’t get any easier if you happen to also be the child of refugees and Holocaust survivors (or any other intersectional group). It’s a lot to shoulder.

Professionally, I’ve devoted my life to building systems for scalable behavior change, notably in the fields of gamification and behavioral design. As a gay man, I’ve sought to apply those skills to issues that mattered to me. Throughout, I’ve been fortunate to have volunteered for and worked on a number of public health and civic-related projects, including numerous interventions for HIV/AIDS. And on a personal note, I was one of the first Americans to go on PrEP after FDA approval in 2012 and have supported hundreds of others in their journey to personal mastery over HIV.

This year, the international AIDS conference was supposed to have returned to the United States for the first time in decades. Covid-19 has made it go virtual. One of the topics that is top of mind for the community is the fact that there are now tools to eradicate the disease: PrEP to prevent it, TasP to reduce viral loads and transmissibility, and messaging around U=U, the understanding that HIV-positive people whose viral loads are undetectable on sensitive tests pose no risk of transmission.

We’ve learned a lot in the 40 years since AIDS was first discovered. And our tools and techniques have improved greatly. The stigma and emotional weight of the disease is also diminishing, creating an entirely new opportunity for the next generation.

If the threat of AIDS was not enough to get people to simply wear a condom, why do you expect better results from telling people to wear masks and socially distance?

So it’s been fascinating to watch people polemicize about Covid-19 using AIDS as their reference point. This usually takes the form of statements like “AIDS survivors have words for you about minimizing Covid-19” or judgments like “You should know better” in reference to precautions and behaviors.

Sure, there are lessons to be had from AIDS in how we manage Covid-19. But they are not the ones you might imagine. (Especially if you’re prone to moralizing.) Let’s break down some of the biggest cognitive mistakes and the lessons public health folks should know better now — after nearly half a century of experience with a far-reaching pandemic.

Mistake #1: People should know better

AIDS was an incurable disease of unknown provenance that killed basically 100% of the people who contracted it from 1981 to 1994 (when the first viable treatments to prolong life were broadly deployed). By contrast, Covid-19’s death rate is likely to be at least 50 to 100 times lower. HIV can be asymptomatic for many years, whereas Covid-19’s asymptomatic period is measured in days. In every factual way, AIDS should have been scarier than the coronavirus.

From the start of the AIDS crisis, it would be years—possibly even a decade—before meaningful behavior change could be measured. Rock Hudson died in 1985, but for most of the rest of the decade, people still had sex without condoms.

If the threat of AIDS (and all the cognitive biases that predispose one to believing they don’t — or do — have it) was not enough to get people to simply wear a condom, why do you expect better results from telling people to wear masks and socially distance? Though it’s been 40 years, our individual ability to change our behavior and see clearly hasn’t necessarily improved—or has it?

My personal observation is that many times more people are wearing masks in the first six months of Covid-19 than were using condoms by the fifth year of the AIDS crisis. This is a major improvement over our reaction in the 1980s and, frankly, something we can be proud of, rather than embarrassed about.

Perfection is — as always — the enemy of good.

The AIDS lesson for Covid-19

Persuading people to change a behavior requires consistent, universal, highly marketed and packaged messaging that repeats the same idea over and over again. It takes years to effect this behavior change, and it doesn’t simply come about by people being able to reason. But things have definitely improved.

Mistake #2: People should follow guidance from experts

Obviously, there is societal confusion right now about who exactly are the experts on Covid-19 and what exactly we should all be doing. The government is sowing discord by not having a unified voice or strategy. Each state is following a different mitigation protocol, and the right-wing media is not afraid to hammer out conspiracy theories.

This ambiguity drives Covid-19 deaths and anxieties because it increases our dependence on two human cognitive errors: the paradox of choice and confirmation bias. To summarize: The paradox of choice posits that the more options we have, the harder it is to make a decision among the best choices. Confirmation bias is a cognitive distortion where we choose messages that confirm our intrinsic beliefs even if there is evidence to the contrary. Both of these are omnipresent but increase during leadership vacuums. Both are also — in the absence of trust — responsible for negative outcomes.

During the AIDS crisis, the U.S. federal government was wickedly slow to act. President Reagan didn’t publicly talk about it until 1987, and in the meantime most arms of the government simply ignored it as a problem affecting “gays and sex workers” — both marginalized communities. By comparison to AIDS, the government’s tepid response to Covid-19 has been positively action-packed.

Just as now, during the early days of the AIDS crisis, there was massive confusion, hysteria, conspiracy theory, and dismissal. There was just as much confusion about who to believe in 1981 as there is in 2020. In both cases, however, what affected people most was not governmental messaging, but rather a personal experience with the illness. Now, as then, we’re most likely to empathize with someone if we’ve faced a similar challenge ourselves.

Ryan White, Pedro Zamora, and other young people who were openly HIV-positive in the late 1980s and early 1990s were essential in spreading the news about the disease. But for the better part of the 1980s, few were willing to be public about their illness unless they were on death’s door. Our discourse today lacks such Covid-19 poster children, but we’re still in the early days, and lots of information about the disease’s prognosis is unknown. Once there is a stable understanding, it will be crucial to bring forward brave and honest people who can openly advocate for change.

The AIDS lesson for Covid-19

Mistrust of the government and knowing who to listen to is an omnipresent problem. Coming out about illness and destigmatizing it through bravery is a pattern we know helps people identify and change their attitudes and behaviors.

Mistake #3: Shame changes behavior

AIDS brought with it a torrent of shame and embarrassment that many gay men — positive and negative — still harbor today. On top of having to navigate coming out in a hostile climate and establishing identity and community on your own, those who have lived through the AIDS pandemic also have to process the shame associated with the disease.

If you were HIV-positive during the early days of the pandemic, the shame was that you had done something wrong — that you were somehow responsible for giving or getting this disease. And if you were HIV-negative, you lived in a culture that assumed all gay people would eventually contract AIDS and die, and so you felt ashamed about wanting sex and intimacy, because it would ultimately kill you.

But shame is a weak force in behavior change. It has a tendency to drive unwanted behaviors underground. In the wake of AIDS, the barebacking movement became an established phenomenon with the rise of the internet. In the midst of Covid-19, a substantial number of people are editing their social media to minimize the impression that they’re hanging out with friends in questionable ways. For every post by a thoughtless teenager on a Florida beach, there are thousands of people doing the same thing but not posting about it.

And as we learned with most shame-based scenarios, the people most likely to call you out for your behavior are the ones most likely to be engaging in it. This makes it all the more challenging to see how mask-shaming or social-shaming is changing behavior. Instead, it is driving it underground.

The AIDS lesson for Covid-19

Shame drives behaviors underground and can make them perversely more exciting or enthralling. A removal of Covid-19 risk-related shame is critical.

Mistake #4: Closing venues is a good thing

The biggest shame-based mistake of the AIDS crisis was the decision to shut down the bathhouses. Because they were considered major disease vectors and straight people felt squeamish about gay sexual proclivity, one of the easiest ways for leaders to demonstrate swift and strong action was to close down gay sex venues. And so they did, thus removing a core sector of the cultural institutions available to gay men at the time.

Did this stop unsafe sex from happening? No. Instead, behaviors simply shifted to new locations, where they were now unmonitored entirely. It would be more than 15 years into the pandemic before public health systems woke up to the fact that sex venues were actually great places to teach people about safer sex and to do outreach. In the United States, much of this progress can be attributed to the tireless work of Dr. Demetre Daskalakis and his compatriots.

Similarly, leaders today wantonly focus on venues as the crucial vector for staunching Covid-19, and the logic is pretty flawless for many of the closures, including bars, nightclubs, and theaters. Though impactful in some ways, these shutdowns don’t necessarily change underlying behaviors, and sometimes they just move them into more risky — and less visible — corners.

For example, people are still giving and getting massages, despite the fact that these are currently not allowed. If the government had allowed massages to go forward but with protocols, inspectors from the department of health could make site visits and educate practitioners on the safe approach to hands-on treatments. They could provide PPE and ensure compliance with rules. But now, the activities are just underground and will undoubtedly contribute to growth of the disease.

The AIDS lesson for Covid-19

Shutting down venues doesn’t necessarily change behaviors, but it does tend to drive them underground. Any necessary risk-mitigation education will be harder to accomplish if everyone is acting in secret.

Persuading people to change a behavior requires consistent, universal, highly marketed and packaged messaging that repeats the same idea over and over again.

Mistake #5: People should always have masks

Condoms have been a core part of HIV prevention efforts since the mid-1980s. In the beginning, nonprofit activist groups like ACT UP and others subsidized condom distribution, and county health authorities made some efforts to provide them for free. The general belief was that condoms were not especially expensive or difficult to acquire: You didn’t need a prescription, and a pharmacy was on every corner. Therefore, little effort was placed on shifting the distribution of condoms from pharmacies to “last mile” venues like bars and bathhouses.

In the early 2000s, armed with fresh funding from Congress and various states, county health departments began aggressively distributing free condoms. Researchers had long believed that condom use would be increased (and noncompliant excuses decreased) if condoms were available everywhere for free. This turned out to be true, and research indicated that 80% of people who saw free condoms at bars took one, and 73% of those used one.

Masks, like condoms, are a cheap tool that can reduce the spread of Covid-19. So it’s surprising that county health authorities are not stationed everywhere handing out free masks. If the money isn’t there to support such initiatives, it should be. It’s 2020, after all, and public/private alliances abound. County health departments could certainly get creative by partnering with local businesses to subsidize mask distribution.

The AIDS lesson for Covid-19

It is cost-effective to invest in distributing free and ubiquitously available prophylaxis. Though we know that not everyone will wear a mask, we also know that increased compliance and availability nonetheless can help slow the disease’s transmission.

Mistake #6: Better (overly) safe than sorry

During the early days of the AIDS crisis, a common public health refrain went something like, “Celibacy is the only safe sex, but if you have to have sex, use a condom/dental dam, even for oral.” Health departments all around the world stuck to this messaging until well into the early 2000s.

This advice, and indeed the medical literature on the transmissibility of HIV it was based on, was sitting atop a fundamental flaw: The understanding of how HIV was transmitted was, for decades, based on self-reported tracing behaviors that HIV-positive people provided generally only after they received their diagnosis.

In turn, health departments published research that showed the level of risk for various kinds of behavior, listing oral sex without a condom as having a medium-high risk for transmission.

But, in fact, oral sex is not a transmission vector for HIV. We eventually figured this out as an offshoot of the San Francisco HOT study in the late 1990s/early 2000s. For the first time, people were asked what their sexual behaviors were before regular diagnosis. This removed the biases in the data to minimize personal responsibility and immediately showed something crucial: No one in the oral sex–only camp contracted HIV. Based on the medium-high risk assumption, the expected percentage testing positive would have been around 11%. Here, it was zero.

This study came out while I was active at the San Francisco Department of Public Health in a number of AIDS-related studies, and when I asked a colleague there to tell me about the HOT study, she actually closed the door and said, in a whisper, “I’m really not supposed to talk about this and we really don’t want this getting out, but… oral sex isn’t risky. At all.”

This was in the year 2000, nearly 20 years after the start of the AIDS crisis. Public health authorities were so afraid to be held responsible for HIV that they held onto obviously wrong advice and information for decades. Even in the 2020s, there are public health agencies extolling the need to always use a condom or dental dam — when transmissibility of HIV is effectively zero for low-risk activities.

Compare this with today’s Covid-19 reactiveness and you’ll see the same pattern playing out. That Texas medical “risk ratings” chart that was making the rounds? It’s based on survey data of medical doctors, not on epidemiological research. And the government’s guidance on which businesses to open or close are also guesses, rooted in bad data we don’t fully understand.

When the George Floyd protests erupted, many politicians who had previously told people to stay home at all costs advocated for folks to march in the streets with their masks on. At the time, this was also a guess (and a political calculation) about risk that used protesters as a living laboratory.

What undermined the efficacy of HIV public health agencies wasn’t their overly cautious initial response. It was that they held onto their ideas even after they were disproven. By 2000, most gay men had figured out that oral sex was not risky — even though the departments of health were still saying the opposite. This eroded the population’s willingness to listen to any advice because of a cognitive belief that “if this is wrong, anything they say might be wrong.”

The AIDS lesson for Covid-19

As information evolves, health authorities need to be diligent about incorporating that advice. They should act from a place of caution, not overreactiveness to preserve their authority. And this advice must always be predicated on respecting the autonomy and intelligence of the population.

Mistake #7: Criminalization works

We know that masks work to reduce the spread of Covid-19, though we may not know the precise how or why. As part of this, many governments have issued executive orders mandating mask wearing while in public under specific circumstances. In California — as with many other states and municipalities — failure to comply is a misdemeanor and carries a fine.

Many people I know — in particular, those who are stridently liberal and in favor of police reform writ large — have been calling for harsher penalties and stricter judicial enforcement of mask regulations. Despite the obvious hypocrisy, this cry for police action is fundamentally misguided.

The AIDS crisis also provoked a flurry of laws. Notably, these included executive orders that banned any HIV-positive person from entering the United States (1987–2009) and laws that criminalized the transmission of HIV (these are still on the books in half of the United States). Never mind the extensive rules targeting HIV-positive people’s livelihoods and social activities.

The Americans With Disabilities Act was passed in 1990, but HIV-positive people were not covered under its protections until 1998. From 1981 to 1998, it was legal in most of the United States to fire someone for even the suspicion of being HIV-positive. Today, HIV-positive people are prohibited from working in a number of fields, including as pilots — regardless of viral suppression. Sexually active gay men, even those who are HIV-negative, are still not allowed to donate blood.

These laws have been very counterproductive. They stigmatize people, limit economic options and freedom, and drive shame/fear avoidance behaviors that further the spread of disease. The classic example from HIV criminalization is the requirement that you had probable cause to know you were HIV-positive before being liable for infecting someone. This law provides a perverse incentive for people to never get tested (plausible deniability). The same thing is probably true of mask regulations and other Covid-19 safety strategies. If people are complying with public health rules, they are likely doing so where they can be seen or found out, but not where they are under the radar.

The criminalization of HIV has followed a predictably depressing pattern of racial injustice. For example, in California, Black women account for 4% of the population, but 21% of the people charged under HIV criminalization laws. Covid-19-related public health criminalization would likely fit this same pattern.

As with most deterrence theories of the law, evidence is scant on the ground that criminalization makes a significant difference in behavior.

The AIDS lesson for Covid-19

Criminalization is a slippery slope that doesn’t do anything to change hearts and minds, while creating perverse incentives for people to dissemble. Persuasion is a better tool.

For every post by a thoughtless teenager on a Florida beach, there are thousands of people doing the same thing but not posting about it.

Mistake #8: Pleasure doesn’t matter in times of crisis

In all the conversations about safer sex to combat the AIDS crisis, there was very little discussion or acknowledgement of the need for sexual pleasure. Sexual pleasure — particularly for gay men — had been subordinated to the safer-sex message. As a result, a generation of people grew up having to reconcile their desire for affection, connection, and intimacy with their fear of dying a horrible death. There was minimal pro-sex guidance.

This is probably the most controversial of issues within the HIV community today, though thanks to the hard work of advocates like Damon Jacobs, it is increasingly less so. The basic premise is that we must include the desire for pleasure as a normal and expected part of developing strategies for harm reduction and intimacy.

Similarly, strategies deployed for Covid-19 management should take into consideration people’s needs for sex and social connection. Because more than 100 million Americans went into Covid-19 quarantine single, countless among us have found themselves depressed and despondent months into isolation.

Assuming people can simply pause their need for human connection is foolish and not borne out in the historical record. To be successful with this kind of behavior change, you must include our pleasure drive as a critical factor in the process.

The AIDS lesson for Covid-19

Don’t minimize our basic human needs (for example, autonomy, intimacy, mastery) and assume we can abrogate them indefinitely for this disease. Most people cannot, and over time, compliance will trend downward.

Mistake #9: Testing is everything

Testing for the purpose of contact tracing and clinical diagnosis is essential for medical professionals. However, there are secondary issues — often psychological — impacted by testing that must be considered.

The first few generations of HIV tests were very insensitive, requiring six to 12 weeks post-infection for results to show up and a second test for confirmation (because of their high error rate). Over 30 years, this was narrowed to a highly reliable test that is efficacious by week two of infection, and even earlier in many HIV-positive patients. Today, we also have FDA-approved at-home HIV tests and rapid (five-minute) swab tests for the disease. But those early tests lingered for a long time.

The tests were psychologically terrible. First, you had to consider the six-to-12-week window post-sex. If you thought you had been potentially exposed to HIV, you were supposed to mark down the date, abstain from having sex with anyone for three months, and then go in for a test. And once you gave blood, you might have to wait two to four weeks to receive the results.

Because HIV status was considered problematic for insurance, employment, and licensure reasons (as mentioned above), many people were afraid to get routine HIV tests at their primary physician’s office. They went to anonymous testing centers — often paid for by counties — where they were given a number and told to come back two weeks later.

Everything about this process was broken and stressful. Each day after the test, you agonized over whether or not you were already infected and going to die. And the long interval of the tests meant that you had to sit with that anxiety for weeks — sometimes months — between exposure and confirmation one way or the other. Tests were also highly inaccurate, meaning people often had to be retested to clear a false positive, while false negatives could be anxiously explained away.

In some ways, the Covid-19 testing landscape is much better. Tests are generally available, results come back in under a week, and they are often free. But the lack of testing reliability and the stigma associated with a positive result are still deterrents. Moreover, Covid-19 testing is usually not anonymous, further depressing test rates among those who fear knowing they’re sick more than they fear being sick. And the experience itself — clinical, hazmat, anxiety-filled — also depresses testing cycle adherence.

To whit, we’ve done nothing about teaching testing etiquette. Every gay man I know has had to send or receive a text message that says, “Hey, I may have exposed you to gonorrhea, I’m sorry,” at least once. This is a form of contact tracing, automated in some health systems and ad-hoc in others.

As a result, we are well trained to deal with this. Gay men on the receiving end of the news rarely freak out these days, and you can expect to get a “Thanks for telling me” reply before a “You asshole,” though sometimes those texts come in back-to-back.

Most of the population hasn’t had the need to go through this and doesn’t understand the etiquette for contact tracing and responsible public health reporting. We need to educate people on how this works to destigmatize sharing a positive result and to increase testing.

The AIDS lesson for Covid-19

Make testing easy, free, fast, anonymous, and nonjudgmental. Train people to expect to receive a contact trace for a positive exposure and how to deal with that in a minimally anxious way. This will decrease testing avoidance, increase the number of people getting tested, and ultimately improve health outcomes.