The Pro-Coronavirus Team: Mistrust or Misinformation?
I became the assistant editor of an infectious disease news publication in October 2019, unaware of what was soon to come. My first forays into infectious disease journalism largely concerned HIV and Ebola.
In each Ebola briefing by the US Centers for Disease Control and Prevention (CDC) Morbidity and Mortality Weekly Report, a curious euphemism stuck out to me: “government mistrust.”
North Kivu, the Congolese region where an Ebola outbreak had been spreading at the time, was plagued by decades of armed conflict. There were even pockets of armed resistance to the Ebola response, but skepticism of the international disease response in the Democratic Republic of Congo went far beyond these extreme examples.
Exploring the issue deeper, I interviewed the Médecins Sans Frontières (Doctors Without Borders) project lead on Ebola vaccination, John Johnson. When asked about community mistrust of the international Ebola response, I was struck by his thoughtful answer:
A lot of the things that we heard were that you guys aren’t here because we’re sick. You’re here because we’re contagious. We’ve been sick for years, we’ve had cholera, we’ve had malaria, we’ve had malnutrition, we’ve had armed groups attacking us, and nobody came. And all of a sudden, there’s a disease that scares you. And you come with a massive response with lots of money. And I think they’ve got a good point, we really pay so much attention to threats of global pandemics. And we’ve not really supported them in the last 20 years when there’s been the Kivu conflict, when there’s been outbreaks of different other diseases. I think there’s something to be said for that line of reasoning.
A simple example is, right now in the country you have the world’s largest measles outbreak, ever. And it attracts far less attention than the Ebola outbreak and measles has killed 6000 people already, where the Ebola outbreak over the last 18 months has killed 2000. And that’s not to diminish what Ebola is or the fear that Ebola causes. But to say that when you’re when you’re living through it and see children dying of measles, and nobody’s really interested, it is hard for them to understand why.
— John Johnson, Contagion Connect Episode 5: Ebola: Past, Present, Future | Contagion Live
Are there parallels with the US response to COVID-19? Given the important role of “background disease” comorbidities in America’s COVID-19 mortality, might we ourselves be left asking: why now?
Health workers involved in the Ebola response also faced another delicate issue: certain local Congolese funerary practices involved ceremonially cleansing the deceased’s body. Fellow writers at my old journalistic home would roll their eyes or shake their head when this came up.
To me, it didn’t sound so different from funerals I’d been to where someone might kiss the forehead of a loved one during the open casket section. A fellow journalist described it to me like it was backward, sadly, but ceremonially washing a body struck me as something well-within the range of human burial practices I’d heard of. And it struck me right away as an immensely difficult thing for westerners to show up (covered in PPE) and ask anyone to change.
But health officials take time to learn from the community, and they can’t expect to be saviors.
When I see outrage over socially-distanced funerals, I cannot help but think of how long it took international health officials to respond sensitively to funerary practices during the Ebola epidemics in west and central Africa.
Now, Americans have experienced what it’s like to have health regulations impinge on our own cultural practices. One can pretend it’s “hair salon owners who want to sacrifice us to the stock market” — a massive increase in hunger and homelessness speaks to something else entirely. Polling trends concerning lockdown compliance show a growing number of Americans prioritizing very real economic fears. Economic disasters damage the health of the public as well.
Those of us working in science communications should prepare to navigate contentious debates amid immense public mistrust, for years to come. The conversation has just begun. That’s how it should be when we see sweeping policy changes that differ from pandemic response norms.
(Even shutdowns for the far deadlier 1918 influenza pandemic were shorter and more localized.)
Scientists will analyze and assess the social, political, and health implications of SARS-CoV-2 suppression strategies (various non-pharmaceutical interventions) for years, even after the WHO’s public health emergency of international concern designation for COVID-19 is eventually rescinded.
Under the orthodoxy in COVID political language, it often sounds like there’s a pro-coronavirus team out there that The Lifesavers are fighting. I’ve spent plenty of time talking to people across this space; I’ve not met anyone pro-coronavirus.
It’s noteworthy that people like David Nabarro or Raj Bhopal who advocate a voluntary/cooperative approach that still seeks to dramatically curb COVID spread are subject to just as much slander as more “radical” critics of lockdown.
I don’t care if you’re Peter Hotez or Martin Kulldorff — everyone hates to see fellow human beings sick and dying. It is a natural and productive revulsion. But public frustration with the coronavirus response doesn’t match the folk devils you hear about in the social media bubble: it’s not conspiracists, selfish Americans who want others to suffer, or Russian bots.
We have seen child advocate organizations like UNICEF condemn school closures. Those fighting tuberculosis (which already kills more than 1 million people around the world annually) warn that disruptions to health services could kill more people than COVID-19. The same warning applies to HIV and malaria services, disrupted childhood vaccinations, and more.
There have also been social uprisings related to COVID-19 restrictions. Just the other day, police used tear gas to disperse hundreds of Albanians protesting the killing by police of a 25 year old man (my age) who authorities said had violated an overnight curfew “imposed to halt the spread of the coronavirus.”
Similar examples can be found throughout South America, where many countries imposed harsh lockdowns at an immense social cost.
I believe that the role of science communication is not to simply present the public with a gospel from on high — it must include feedback: the many smart people thinking about public health need to know what messages are coming back from the public. When there is a pain-point, public health officials need to see it.
Just as was the case when I covered Ebola, HIV, and other pandemics, honest thinkers about health systems are forced to painfully confront the ways interventions made in a biosecurity crisis management paradigm can be culturally mistuned, lack precision, or even cause serious harm.
We have to be honest that community mistrust reflects real misalignments at play in a pandemic response: just as the international health community struggled with cultural difference and establishment mistrust amid recent Ebola epidemics, it has now encountered the importance of voluntary cooperation and social sustainability on a global scale.
It has also encountered the limits of political will.
The last thing I want to be is a pundit. I’ve raised concern in good-faith when I spoke to friends I made in the infectious disease space, where I’ve had the honor of meeting many intelligent and personable scientists. Some of them saw a lot wrong with the intellectual climate too, but it is difficult to speak on the record amid shame and moralizing. Institutionally, even persuasion of those in the scientific community with doubts was not a priority in this pandemic response. This is immensely frustrating for those of us who prize truth.
I know that these debates have been highly politicized, but it is important we set aside prejudices to open them up before we make another huge mistake.
The denialist folk devil just isn’t real. We all love our seniors, for example, and are trying to figure out the best way to protect them. But what of those seniors who are liable to “wither away” from isolation if we continue an abstinence-only approach to social contact? For health interventions to matter, there must also be something left of our loved ones. And of ourselves.