Navigating Pandemics: Lessons from HIV and COVID-19

Back in the 1980s, we discovered that public health messaging divorced from people’s values simply doesn’t cut it.

Throughout the pandemic’s onset, governmental, epidemiological, and health statistical communications seemed to hinge on the belief that inundating people with graphs, models, statistics, and information would spur rational action. Even when these directives clashed fundamentally with daily life: isolating oneself at home, potentially in solitude, severing all intimate connections beyond one’s household, enforcing lockdowns.

While this approach initially worked in 2020, reacting to an abrupt catastrophe, it proves unsustainable in the long haul. The cultural, social, and political narrative of the HIV pandemic taught us that focusing chiefly on ideal individual behavioral guidelines to shield a population doesn’t pan out.

When I encounter “doomsday” epidemiologists advocating for locking down until we achieve an idealized #zerocovid state, I fear we haven’t grasped those crucial lessons yet.

I don’t intend to discredit or undermine the vital work carried out by epidemiologists in grasping disease transmission. However, there are myriad other influences shaping our actions beyond access to seemingly objective and ideology-free epidemiological data and visuals. Epidemiologists examine populations, i.e., people within social contexts. Quantifying risks based on population-level data and models isn’t the sole driver of our conduct.

In the instances of HIV and other epidemics, epidemiological models either proved flawed or, at the least, inadequate. In the early stages of that crisis, epidemiological data from the US inaccurately framed the virus as primarily afflicting already marginalized groups – like the misconception that AIDS solely affected gay men – thus exacerbating social stigma. Additionally, there were irrational political moves, such as the 1985 shutdown of New York’s Mineshaft bar in a bid to stem the virus’s spread.

Yet, none of these measures proved sufficient. It wasn’t until the 1990s, with advancements in virology, that we saw a glimmer of hope in combating AIDS, not through the behavioral changes initially advocated by epidemiologists and public health experts in the pandemic’s infancy, but via antiretroviral treatments and prophylaxis, which effectively halted HIV transmission.

However, this doesn’t imply we idly awaited treatments. Treatments materialized due to political pressure from affected communities, acknowledging that merely expecting behavioral shifts and unwavering compliance wasn’t sustainable. We ceased prioritizing the absolute truths posited by a single scientific domain and instead drew insights from a broader spectrum of medical sciences, social sciences, humanities, and activist and patient groups.

For instance, in the US, the Gay Men’s Health Crisis group spearheaded condom promotion among gay men when authorities hesitated, instead advocating for abstinence. Activist groups like Act Up elevated the voices of patient groups and communities in political and biomedical research realms. Through this, we not only deepened our comprehension of the pandemic but also gained insights into what resonates with people and the lives they cherish.

We must endeavor to comprehend the drivers behind people’s actions, the significance of behaviors perceived as risky to them, and meet them at their level by acknowledging and respecting their value systems. Social, emotional, and cultural dynamics are in play. Desires, pleasures, the allure of intimacy, the yearning for closeness and physical touch all factor into individuals’ decisions.

Amid Covid, we once again confront the challenge of extrapolating individual behavioral recommendations from population-level data and how this abstract approach often overlooks social intricacies and community-specific differences.

Risk and the ability to safeguard oneself are frequently unfairly and disparately distributed – consider epidemiologists advising people to congregate in “their” gardens, to utilize separate bathrooms if one person falls ill at home, or to invest in air purifiers for their residences. Government directives seemingly assume that everyone resides in detached single-family homes with their loved ones, or that homes inherently serve as secure sanctuaries where one can self-isolate without solitude or fear of harm.

Moreover, we observe a recurrence of ineffective messaging. In the pandemic’s early stages, the Terrence Higgins Trust suggested gay men abstain from casual sex, a recommendation unlikely to be sustainable long-term. Conversely, the sexual health activist group Prepster disseminated a series of comics (akin to those by the Gay Men’s Health Crisis in the 1980s), offering advice to queer men on navigating Covid risks during hookups – a more pragmatic approach than abstinence-only.

The lessons gleaned from the AIDS crisis underscore that public health messaging devoid of an understanding of what individuals value as a life worth living, and targeting an abstract general populace, falls short – and that epidemiologists can err both in science and guidance. We must engage not only scientists but also social scientists, cultural scholars, and communities to gain deeper insights into what resonates with people, while recognizing that our behavior isn’t always (and will never be) purely rational.

Models often assume that populations consist of autonomous agents who solely respond to reason given a specific set of information. Yet, for those delving into the medical, cultural, and social narratives of an older and still ongoing global pandemic – HIV – such perspectives fail to capture the intricacies of decision-making. They’re ultimately restrictive and counterproductive.