The understanding of diseases and the pathogens that cause them has advanced by leaps and bounds over the past few decades. Yet, the initial human response to a disease outbreak has barely changed with time.
Novelist and Nobel Laureate Orhan Pamuk reminds us that “People have always responded to epidemics by spreading rumor and false information and portraying the disease as foreign and brought in with malicious intent.” About the current pandemic and historical outbreaks of plague and cholera, he says, “There is an overabundance of similarities. Throughout human and literary history what makes pandemics alike is not mere the commonality of germs and viruses but that our initial response has always been the same.”<1>
It is important to explore the human response to disease outbreaks—how rumours, half-truths, denial and stigma have worked through the ages and why it is necessary to build trust and communicate well. Science offers us unprecedented hope and a fundamental understanding of why we need to live more sustainably.
Rumors and half-truths
A common human response is to spread rumours and false information. In the past, much of this was driven by not understanding a disease, but even now with easy access to science and technology, there is poor public understanding of the method and process of science. Modern communications tools enable rumours and false information to spread faster than the disease itself. As with old plagues, rumours and accusations based on nationalist and religious identities, fueled through social media, have impacted how the COVID-19 pandemic has unfolded in different parts of the world, including in India.<2>
Through the ages, the most common rumours were about who carried the disease and from where. The disease is always foreign, either brought with malicious intent or due to the incompetence of others to contain it in a foreign land. The Romans blamed Christians and their practices for angering the Roman gods and causing the Antonine plague of smallpox in 165-180 AD.<3> In the 1980s, during the early days of the HIV/AIDS disease, Rev. Billy Graham, a Baptist preacher in the US, termed it “a judgement of God”. Television evangelist and Moral Majority leader Jerry Falwell Sr called it the result of “perverted lifestyles” of homosexuals, concluding that “AIDS is God’s punishment”.<4> Others argued that the HIV/AIDS virus had something to do with voodoo because people in Haiti were infected in large numbers. Still others believed that HIV came to Earth from outer space on a comet or was a bioweapon created in a lab by the US’s Central Investigation Agency, US Defence Department or Big Pharma.<5>
During the Ebola outbreak in 2014-16, which had 28,600 cases and 11,325 deaths,<6> the common rumors were again about the virus having been manufactured in a US military facility, or a government plot to attract more foreign aid.<7> People in West Africa were particularly wary of the Ebola Treatment Units set up by foreign aid agencies like Medicines Sans Frontiers, which was hardly surprising since containment and high fatality rates meant that those who went in were not seen again. It was rumored that these units were meant to harvest organs and steal blood.<8> Others drew on memories of slave trade and colonial histories—many of the routes used by foreign health workers were the same as those used by the slave traders.<9>
In 2020, contrary to overwhelming scientific evidence that the COVID-19 virus was first transmitted from bats to humans and then from person to person, many still assert it was made in a lab in China.<10> Surprisingly, French virologist Luc Montagnier, who discovered HIV, is among those with such radical views.<11>
Denial, stigma and its consequences
Denial has also been part of the early response to disease outbreaks. Governments distort facts and manipulate data to first deny the existence of a disease and then cherry pick data to not reveal its full extent, often claiming this is being done in ‘public interest’ to not alarm people. The continued denial of COVID-19 as a problem at the highest levels of the US government during the early part of the pandemic has led to a grave situation in the world’s most technologically advanced nation. The country is reeling with over 6.3 million confirmed cases and over 191,000 deaths as of 4 September 2020.<12>
"The continued denial of COVID-19 as a problem at the highest levels of the US government during the early part of the pandemic has led to a grave situation in the world’s most technologically advanced nation"
But this is nothing new. Peter Duesberg, a prominent researcher at the University of California, held the view that AIDS is not caused by HIV but instead due to the use of recreational drugs and anti-retroviral medication.<13> Though comprehensively rejected by the scientific community,<14> Duesberg’s denialism influenced South Africa’s HIV/AIDS policy under President Thabo Mbeki (1999-2008). The failure to provide medication to HIV/AIDS infected people in a timely manner, partly due to this denial, is thought to have caused hundreds of thousands of preventable deaths and new infections in South Africa.<15>
The International Society for Infectious Diseases’ Program for Monitoring Emerging Diseases (ProMED) trawls the internet looking for chatter about unusual disease outbreaks. Founded in 1994, it has pioneered the use of electronic, internet-based emerging disease and outbreak detection and reporting. On 10 February 2003, ProMED received a notice from the Hong Kong health department warning of a pneumonia outbreak in China’s Guangdong province. When the World Health Organization (WHO) enquired the next day, China revealed 305 cases and five deaths from an outbreak that started in November 2002. That was the first time the world heard of SARS, which eventually spread to 29 countries, infected 8096 people and caused 774 deaths.<16> On 30 December 2019, ProMED again picked up chatter about a cluster of pneumonia cases in Wuhan, China, linked to the seafood and wild animal market. The Chinese Center for Disease Control confirmed this the next day and on 7 January 2020 released the virus sequence, confirming it to be a novel virus related to the SARS virus of 2003. In both cases, it is clear that health authorities in China knew of the outbreaks but failed to notify the world. When China finally decided to quarantine Wuhan, five million people had already left for the Chinese New Year break.<17> Since then, what was initially a local outbreak has developed into a global pandemic affecting 215 countries, with over 26 million confirmed cases and over 873,000 confirmed deaths as of 4 September<18> The actual figures are likely to be much higher.
In her book Illness as Metaphor, the American writer and philosopher Susan Sontag drew attention to how any disease whose causality is murky and for which treatment is not readily available becomes a target of half-truths. “First, the subjects of deepest dread (corruption, decay, pollution, anomie, weakness) are identified with the disease. The disease itself becomes a metaphor. Then, in the name of the disease (that is, using it as a metaphor), that horror is imposed on other things.”<19> As a cancer patient in the 1970s, Sontag had faced stigma and made to feel that the disease was shameful and somehow her fault. Just as cancer was linked to unhealthy habits such as smoking and excessive alcohol use, HIV/AIDS was initially labeled as a disease of sexual excess and perversity—even called Gay-Related Immune Deficiency in medical circles, or simply “Gay Disease”.<20>
Communications and trust
The perceived threat that HIV/AIDS patients posed to society at large turned this stigmatisation into hysteria and panic. This can be traced to three factors—the discovery that HIV/AIDS was a blood-borne disease and could get into the nation’s blood supply; poor public health messaging and the use of vague terms such as “bodily fluids” giving the impression that it could even be transmitted through objects handled by an infected person; and that it was caused by a new deadly virus.<21> Similar fears are evident with COVID-19. It is caused by a new virus, which, despite all the advances made in the past few months, is still not fully understood. Unlike HIV/AIDS, but like the deadly Spanish Flu of 1918, the COVID-19 virus is transmitted by aerosols. And there has been mixed messaging on masks and the technicalities of airborne transmission,<22> which confuse people and create fear.
Free speech and trust are important tools to control outbreaks. This was evident in the way China handled both SARS and COVID-19, though in the latter case it was far more open and responsive. In India, Kerala controlled its first outbreak with speed and efficiency, building up on its efficient public health system.<23> Also evident was a culture of trust between the state government and the population, driven by clear and transparent communication and the willingness to take care of the vulnerable. At the same time, the rest of India was facing a serious migrant crisis, poor communication and a trust deficit.<24> <25>
"Free speech and trust are important tools to control outbreaks. This was evident in the way China handled both SARS and COVID-19, though in the latter case it was far more open and responsive"
At the time of writing, India has recorded over 3.9 million confirmed cases and 68,000 deaths, placing it with the third highest toll in number of cases and deaths after the US and Brazil.<26> Alarmingly, the outbreak in India is now growing faster than any other country in the world. Over the week ending September 4, India averaged 78,364 daily cases, which was far higher than in the US (41,804 cases) or Brazil (40,237 cases).<27> Why is this happening to a country that imposed curbs very early and had one of the world’s toughest lockdowns for 68 days, from 25 March to 31 June? The answer probably lies in communications and trust. The government still claims there is no ‘community transmission’ and has continuously emphasised only the increasing recovery rate and low mortality, which is only half the truth.<28> With the case fatality rate being 1.8 percent, the recovery rate is bound to approach 98.2 percent; it has increased continuously and now stands at 77 percent.<29> This official narrative has brought complacency to the public at large. Equally worrying is a shift in the outbreak from urban to rural India—from an estimated 40:60 rural-urban distribution for the first million cases to a 67:33 distribution now.<30> With poor healthcare penetration in rural India, this is a matter of grave concern.
Science, hope and the future
Unlike old plagues and pandemics, the fear today is fed more by our understanding of disease than of the unknown. “Fear, like the thought of dying, makes us feel alone, but the recognition that we are all experiencing a similar anguish draws us out of our loneliness,” says Pamuk. He further adds, “We are no longer mortified by our fear; we discover a humility in it that encourages mutual understanding”.<31> In a world gripped with disease and lost livelihoods, people have come together to help each other in India and elsewhere. Doctors, nurses and other healthcare workers remain on the frontlines treating the sick in every part of the world, even though hundreds of thousands health workers have been infected and thousands of others have died.<32> Promisingly, recovered patients are willing to donate plasma to save those who are gravely ill.
The global response to COVID-19 also displays the power of science and the willingness of scientists around the world to work together. Within days of its notification, viruses were isolated from patients and characterised, which paved the way for developing diagnostic tests, vaccines and therapies. As of 4 September, over 94,000 SARS-CoV-2 genomic sequences are publicly available,<33> allowing scientists to model its evolution and movement across the globe.<34> Over 200 vaccines are under development, with 46 in human clinical trials and three receiving limited use approval.<35> This is remarkable considering that in 2003 it took 20 months for the SARS vaccine to reach testing. Almost 800 diagnostic tests have been developed,<36> and 20 different treatments are in use with various levels of efficacy.<37> More than 10,000 papers on COVID-19 have been posted openly on pre-print servers since early this year, and most publishers have also made this research open access.
The Global Outbreak Alert and Response Network (GOARN) is a WHO network of over 250 technical partner organisations across the world. It recently reminded the world on the way forward to tackle the pandemic.<38>
“The GOARN Steering Committee urges all governments and partners at a local level to (1) engage communities to build trust for evidence-based public health and encourage local ownership of outbreak control response measures; (2) discourage the politicisation of the COVID-19 response because politicisation is counterproductive and leads to poor strategic decisions; (3) leverage in-country expertise of experienced outbreak responders, including GOARN partners and emergency medical teams, because current decisions can be strengthened by expanding the advisory pool; (4) invest in the rapid expansion of the public health workforce for this response; (5) make decisions on the basis of a comprehensive strategy, the latest evidence, and the epidemiological situation (eg, supervised isolation for infectious patients and mandated mask wearing have been shown to improve outcomes), and explain these decisions clearly; (6) ensure equitable access to diagnostic tests, therapeutics, and vaccines, which should be allocated according to sound public health criteria and needs; and (7) champion multilateral action and international solidarity. WHO is key to the international response as the organisation offers both a global direction to each nation and tailored technical assistance to responders.”
“Historically, pandemics have forced humans to break with the past and imagine their world anew. This one is no different. It is a portal, a gateway between one world and the next. We can choose to walk through it, dragging the carcasses of our prejudice and hatred, our avarice, our data banks and dead ideas, our dead rivers and smoky skies behind us,” says author Arundhati Roy, adding, “And in the midst of this terrible despair, it offers us a chance to rethink the doomsday machine we have built for ourselves. Nothing could be worse than a return to normality.”<39>
We are at an inflection point in our shared history. Let us learn from it for a better future.
This essay originally appeared in Rebooting the World
Endnotes
<1> Orhan Pamuk, “What the Great Pandemic Novels Teach Us”, New York Times, April 23, 2020.
<2> Rasheed Kidwai and Naghma Sahar, “Let’s talk about how Tablighi Jamaat turned Covid hate against Muslims around”, The Print, July 12, 2020.
<3> John Horgan, “Antonine Plague”, Ancient History Encyclopedia, May 2, 2019.
<4> Laurie Garrett, The Coming Plague – Newly Emerging Diseases in a World Out of Balance (New York: Penguin Books, 1994), pp. 330.
<5> Douglas Selvage, “Memetic Engineering: Conspiracies, Viruses and Historical Agency”, Open Democracy, October 22, 2015.
<6> Centers for Disease Control and Prevention, “2014-2016 Ebola Outbreak in West Africa”.
<7> Mark Honigsbaum, The Pandemic Century – A History of Global Contagion from the Spanish Flu to Covid-19, (London: W.H. Allen, 2019), pp. 208.
<8> Honigsbaum, The Pandemic Century
<9> Honigsbaum, The Pandemic Century
<10> Shahid Jameel, “Is the novel coronavirus a product of evolution or deliberate manipulation?”, The Telegraph, May 19, 2020.
<11> Surendra Singh, “Coronavirus man-made in Wuhan lab: Nobel laureate”, The Times of India, April 19, 2020.
<12> Worldometers, “United States”.
<13> Laurie Garrett, The Coming Plague – Newly Emerging Diseases in a World Out of Balance (New York: Penguin Books, 1994), pp. 383.
<14> John Cohen, “The Duesberg Phenomenon”, Science 266 (1994): 1642.
<15> Pride Chigwedere, et al., "Estimating the Lost Benefits of Antiretroviral Drug Use in South Africa" Journal of Acquired Immune Deficiency Syndromes. 49 (2008): 410.
<16> Debora Mackenzie, Covid-19: The pandemic that never should have happened, and how to stop the next one, (London: The Bridge Street Press, 2020), pp. 66-67.
<17> Mark Honigsbaum, The Pandemic Century – A History of Global Contagion from the Spanish Flu to Covid-19, (London: W.H. Allen, 2019), pp. 261-263.
<18> Worldmeters, “COVID-19 Coronavirus Pandemic”.
<19> Susan Sontag, Illness as Metaphor, (New York: Farrar, Strauss and Giroux, 1978), pp. 58.
<20> Laurie Garrett, The Coming Plague – Newly Emerging Diseases in a World Out of Balance (New York: Penguin Books, 1994), pp. 292.
<21> Mark Honigsbaum, The Pandemic Century – A History of Global Contagion from the Spanish Flu to Covid-19, (London: W.H. Allen, 2019), pp. 149.
<22> Jim Daley, “What Scientists Know About Airborne Transmission of the New Coronavirus”, The Smithsonian Magazine, 12 August 2020.
<23> T.M. Thomas Isaac and Rajeev Sadanandan, “COVID-19, Public Health System
and Local Governance in Kerala”, Economic and Political Weekly, LV (2020): 35.
<24> Nitin Sethi and Kumar Sambhav Shrivastava, “Govt Knew Lockdown Would Delay, Not Control Pandemic”, Article 14, April 23, 2020.
<25> Nitin Sethi and Kumar Sambhav Shrivastava, “Frustration in National Covid-19 Task Force”, Article 14, April 24, 2020.
<26> Worldometers, “India”.
<27> Worldmeters, “Reported Cases and Deaths by Country, Territory, or Conveyance”.
<28> Priyanka Pulla, “Four Reasons It’s Hard to Believe India Doesn’t Have Community Transmission”, The Wire Science, March 20, 2020.
<29> Worldometers, “India”
<30> Vignesh Radhakrishnan, Sumant Sen and Naresh Singaravelu, “Is Covid-19 intensifying in rural India”, The Hindu, August 30, 2020.
<31> Pamuk, “What the Great Pandemic Novels Teach Us”
<32> “More than 1,000 Doctors Infected with COVID-19 in India; Global Tally Nearly 3,000”, The Weather Channel, July 18, 2020.
<33> Global Initiative on Sharing All Influenza Data.
<34> Genomic epidemiology of novel coronavirus - Global subsampling.
<35> Jonathan Corum, Denise Grady, Sui-Lee Wee and Carl Zimmer, “Coronavirus Vaccine Tracker”, The New York Times, August 31, 2020.
<36> Foundation for Innovative New Diagnostics, “SARS-CoV2 diagnostic pipeline”.
<37> Jonathan Corum, Katherine J. Wu and Carl Zimmer, “Coronavirus drug and treatment tracker”, The New York Times, August 24, 2020.
<38> Dale A. Fisher and Gale Carson, “Back to basics: the outbreak response pillars”, The Lancet, 396 (2020): 598.
<39> Arundhati Roy, “The pandemic is a portal”, Financial Times, April 3, 2020.
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