Misinformation, fear and stigma: some considerations on COVID-19 and HIV

Since the outbreak of the COVID-19 pandemic, several voices have talked about it making references or real parallels with an older, but dramatically topical epidemic: that of HIV. But what kind of similarities can we make between these two pandemics, and about what?

In an article on Think Global HealthMagdalene Walters reflects on how, in times of infectious diseases or pandemics, it is easy – both for those working on health governance and the lay public – to make assumptions about who may be the “carrier” of a virus or a bacterium. These assumptions, however, very often risk not responding to purely scientific criteria but to be conditioned by stereotypes about social groupings that can already be discriminated against based on gender, sexual orientation, origin, social class, housing condition.

According to Walter, SARS-CoV-2 and HIV share the fact that they have been accompanied by widespread fear, stigmatisation and disinformation, which have not only presented obstacles to effective containment but have also reinforced certain stereotypes. In the case of HIV,

During the start of the HIV epidemic in the United States, fear of foreigners ultimately resulted in restriction on immigration and travel to the United States for non-U.S. citizens living with HIV, lasting from 1987 to 2010. These bans were guised to prevent the spread of HIV, but effectively were a xenophobic attempt to safeguard the economywhich was experiencing a recession in the early 1980’s. This move was baseless given that during the 1980’s there were more people living with HIV in the United States than anywhere else in the world. Treating HIV as an issue external to the United States was based in stigma and provided no benefit to the HIV epidemic.

The identification between a threat to public health and the entry into the national territory of foreign citizens, Walkers continues, was also revealed in the actions taken during the COVID-19 pandemic by the United States against China. Something that should not surprise us, given the xenophobic and racist attacks suffered by citizens with Asian traits also in Italy:

U.S. COVID-19 infections, 60–65 percent of them were seeded by spread from New York. In New York, genetic analysis has shown that the virus was likely imported from Europe, not China. Travel restriction from Europe was implemented a month after that of China. Currently the United States has the highest numberof cases in the world.

Infectious diseases are often an opportunity to reinforce the fear towards those groups considered “different” – either by gender or sexual orientation, origin, social condition. As David Dickinson reports in an article on The Conversation, all epidemics are accompanied by “epidemics of meaning”, and Edmund White, on The Guardian, points out that COVID-19 and HIV share scientific misinformation and the creation of “myths” about origin and spread. Stigmatisation and misinformation hamper understanding of the disease and risk amplifying epidemics because they focus on fear rather than prevention and identification.

However, some point out substantial and significant differences between those two pandemics. In one comment, Mark King reminds us that no one cared about AIDS deaths during the early years of the epidemic. Perhaps even today it would be challenging to see demonstrations of solidarity with people living with HIV, as they have been brought to people struggling with COVID-19:

In the early 1980s, AIDS was killing all the right people. Homosexuals and drug addicts and Black men and women. There is no comparison to a new viral outbreak that might kill people society actually values, like your grandmother and her friends in the nursing home. […] We had to climb over mountains of social bias in order to educate people on the basic facts of risk and transmission. Social distancing was easier then because the bodies of your friends were so consumed by dark purple skin lesions they were barely recognizable as human. There were no Congressional bills promising them paid sick leave or help with their medical bills. They were kicked out of their apartments and then died in the guest room of whoever had the space and the guts to care for them. Tens of thousands of people died of AIDS-related complications before our government began to address it. Many, many, many of those people spent their last breaths in the center of protests in the streets, begging for justice and relief. Their ashes were dumped on the White House lawn. […] To attempt to draw blithe comparisons – Oh! This feels so scary and there are lines at the grocery store and people have to stay away from each other. Hey, does this feel like when HIV happened…? – is an insult to the bravery and sacrifice of the living and the dead.

Masha Gessen, columnist at The New Yorker, reflects on how one of the great lessons of the fight against HIV has been the power of communities coming together to care for each other, putting their bodies – often fragile or dying – on the front line: more complex actions at the time of social distancing. But one of his most acute and at the same time painful reflections concerns the narrative – or narratives – that we can make of an illness, and how these narratives fit into our identity and our present:

Writing in the Boston Review, Amy Hoffman suggested that, because AIDS was so traumatic, so outside our understanding of life, it cannot be made a part of any narrative; one is speaking either about AIDS or about other stories that make up a lifetime, but not about both at the same time. […]

There may be another reason why it would be very hard to carry the memory of the AIDS era wholly intact. Meeting a medical professional of a certain age, one would have to wonder, Were you one of those who refused to enter the room of a person with AIDS? Meeting some nice lady who long ago lost a son to AIDS, one would have to wonder, Were you one of those mothers who refused to let her child come home? Did his friends take care of him as he died, while you stayed away?

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