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The Rational World Paradigm, the Narrative Paradigm and the Politics of Pharmaceutical Interventions
Scientists around the world have been rushing to create a series of COVID-19 vaccines that can keep up with the many variants attested to date. Health authorities in several countries, including the US, UK, China and Russia, have aggressively promoted their vaccine candidates. At the same time, vaccine hesitant members of many communities and anti-vaccine activists continue to question the entire vaccine project, and some even argue that the whole virus is a scam and part of a plot to profit from developing and selling vaccines and other treatments for many years to come. In what follows, we adopt Gust et al.’s (2005) and Browne’s (2018) approach in considering vaccine hesitancy, vaccine skepticism and anti-vaccination as points along an attitudinal continuum rather than distinct attitudes that can be easily delineated. The spread of vaccine hesitant and anti-vaccination narratives, moreover, must be understood against the backdrop of complex factors. One such factor is the growing mistrust of elites and experts, including official sources of medical knowledge and the institutions involved in producing and communicating this knowledge (Kennedy 2019). Doubts about the intentions of WHO and CDC, for instance, feature prominently in contemporary anti-vaccination narratives. Another factor is that concepts such as ‘evidence’ are increasingly questioned and redefined, even within parts of the medical establishment itself (Greenhalgh et al. 2014), and their role in the construction and dissemination of knowledge is being reassessed. These and other factors combine to weave a multiplicity of intersecting and complex narratives that circulate widely in all societies and impact the acceptance of various types of pharmaceutical interventions in general and the uptake of Covid-19 vaccines in particular.
The discussion regarding potential pharmaceutical treatments became highly politicized early on in the pandemic, especially after former President Trump officially endorsed the malaria drug hydroxychloroquine in April 2020, against clear medical advice, arguing “I’m not a doctor. But I have common sense” (Brewster 2020). At that point there was no prospect of any vaccines on the horizon, and with many deaths reported daily in the US and elsewhere, even well-informed doctors began to justify Mr. Trump’s hasty recommendation despite the absence of any scientific proof supporting the drug’s efficacy or safety. Dr Joshua Rosenberg, a critical care doctor at Brooklyn Hospital Center, cited ‘good reasons’ for explaining Mr Trump’s advocacy of the drug (The New York Times, reported by Collins 2020 in Vox):
I certainly understand why the president is pushing it … He’s the president of the United States. He has to project hope. And when you are in a situation without hope, things go very badly. So I’m not faulting him for pushing it even if there isn’t a lot of science behind it, because it is, at this point, the best, most available option for use.
Other doctors argued that false hope can be damaging and criticized the former President and his supporters for cheerleading the drug in the absence of any proof of its efficacy (ibid.).
The debate about vaccines and treatments thus does not only reflect tensions between science and politics and expert and non-expert discourses. It also highlights the fact that there are divergent views within the scientific community itself on when new evidence may be ready to be put into political action, and what considerations – other than the findings of randomized controlled trials – might be brought to bear on the decision. The haste with which a solution had to be found to arrest the spread of the disease, and the pressure on the medical community to produce a miracle cure, both resulted in widespread discussions about studies drawing conclusions that are premature or even fraudulent (Kahn et al. 2020; Jiang 2020). This chapter explores the divergent arguments used in this debate and their various and complex value-laden underpinnings. It also engages with grassroots responses to the roll out of Covid-19 vaccines as a case in point, drawing on historical parallels where relevant to explore some of the reasons (in Fisher’s sense of reasons and good reasons) that inform the decisions different members of the community make about the desirability or safety of vaccines.
5.1. Structural and Material (In)coherence: Science and public policy under pressure
Much of the intense debate and political bickering over Covid-19 vaccines in the early months of 2021, which revolved around the use of the Oxford-AstraZeneca (Vaxzevria) vaccine, arguably undermined public trust in the safety of all vaccines that were being rolled out around the same time. A number of governments paused the roll-out of the AstraZeneca vaccine in March and April 2021 in response to a very small number of serious cases of blood clotting (thrombosis) in patients that had received the first dose. Structural and material incoherence in the public health messages and recommendations that followed from the decision by some governments to halt the roll out of AstraZeneca triggered public anxiety and confusion regarding this specific vaccine and the vaccine programme more generally.
Following the first instances of reported blood clots in Denmark and Norway, the European Medicine Agency (EMA) declared on 11 March that “there is currently no indication that vaccination has caused these conditions, which are not listed as side effects with this vaccine”. A little less than a month later, the EMA’s safety committee (PRAC) concluded that “unusual blood clots with low blood platelets should be listed as very rare side effects of Vaxzevria (formerly COVID-19 Vaccine AstraZeneca)”. In a statement intended for health professionals issued on the same date (7 April 2021), EMA explicitly stated that “a causal relationship between the vaccination with Vaxzevria and the occurrence of thrombosis in combination with thrombocytopenia is considered plausible” (emphasis added). An updated statement on 20 May makes no mention of the “causal relationship” and instead presents the connection between the two as a mere observation: “A combination of thrombosis and thrombocytopenia, in some cases accompanied by bleeding, has been observed very rarely following vaccination with Vaxzevria” (emphasis added).
Another statement for health professionals about the safety and effectiveness of Covid-19 vaccines, this time issued by the WHO on 11 June 2021, similarly acknowledged that “the AstraZeneca and Janssen COVID-19 vaccines have been associated with a very rare and unusual clotting syndrome involving thromboembolic events (blood clots) with thrombocytopenia (low blood platelet count)”. However, the same document implicitly raised doubt about this conclusion: “The overall number of reports received of blood clots in the veins or arteries (including venous thrombosis or venous thromboembolism) occurring without thrombocytopenia is no higher than the expected background population rate for the more common type of blood clots in most countries” (ibid.).
Differences in conclusions, emphases and lack of transparency about the arguments informing the debate led by international and pan-national health authorities fuelled mistrust in both scientific and political institutions, and hence exacerbated vaccine hesitancy globally. A similar pattern of conflicting statements being released at different times pervaded vaccine recommendations at the national level. In Canada, the National Advisory Committee on Immunization (NACI) was accused of creating confusion with its updated Covid-19 statement on 3 May, recommending that Canadians less likely to contract COVID-19 should consider waiting for a Pfizer or Moderna vaccine instead of opting for what was then on offer, i.e. AstraZeneca. This contradicted previous recommendations that encouraged Canadians to take whatever vaccine is available. In its new statement, NACI maintained that it would “preferentially recommend authorized mRNA COVID-19 vaccines due to the excellent protection they provide and the absence of any safety signals of concern”, thereby indirectly creating the impression that AstraZeneca is a second-rate and potentially dangerous vaccine. A few days later, the Ontario government announced that it will no longer offer the AstraZeneca-Oxford COVID-19 vaccine as a first dose due to the risk of rare blood clots. Prime Minister Justin Trudeau later sought to reassure Canadians that all vaccines approved for use in Canada are safe and effective by confirming the original recommendation of taking the first vaccine offered: “Make sure you get your shot when it’s your turn. We are continuing to recommend to everyone to get vaccinated as quickly as possible so we can get through this”.
Similarly, the Australian Technical Advisory Group on Immunisation (ATAGI) advised that people between the ages of 16 and 59 should preferably receive Pfizer shots, while the government maintained that the same group of people can opt for AstraZeneca after consulting their doctors. On 28 June 2021, Prime minister Scott-Morrison declared in a press conference: “the ATAGI advice talks about a preference for AstraZeneca to be available and made available to … those over 60. But the advice does not preclude persons under 60 from getting the AstraZeneca vaccine … So if you wish to get the AstraZeneca vaccine, then we would encourage you to … go and have that discussion with your GP”. These and similar declarations led both journalists and medical experts to conclude that “mixed messaging from the Australian government and ATAGI has created confusion — and hesitancy — about the available vaccines and their safety” (Shields 2021).
The confusion and controversies surrounding the AstraZeneca vaccine and the importance accorded to the very rare reported cases of blood clotting also demonstrate the fundamentally anecdotal or narrative nature of medical evidence. As Rone (2021) points out in connection with the debate about AstraZeneca,
Ultimately, science is based on empirical data and when there is not enough data, science cannot say things with certainty. When new data is available, scientists are ready to correct previous errors thus incrementing knowledge. Science has never been about absolute certainty. Nor has it pretended to be. That is its strength. But this does not sound very reassuring when one needs to take a personal decision affecting one’s own health.
The inherent uncertainty of science means that the positions taken by various national and local governments can and often do rely more on narrative proximity and identification with the individual characters than on risk calculation based on numbers. The case of the AstraZeneca vaccine thus confirms Fisher’s claim that “the operative principle of narrative rationality is identification rather than deliberation” (Fisher 1989:66). In Norway, a country with a small population and high life expectancy, the AstraZeneca vaccine was permanently suspended when five people were hospitalized for a combination of blood clots, bleeding and a low count of platelets after receiving the first dose. Three of them later died. On 15 April 2021, the Norwegian Medical Agency delivered a report to the Norwegian government that concluded the following: “Since there are few who die from Covid-19 in Norway, the risk of dying from taking the AstraZeneca vaccine will be greater than the risk of dying from the disease, especially for younger people”. The Norwegian Medical Agency also acknowledged that there are several uncertainties with this analysis: first, that the current spread of infection informing this conclusion could change, and second, that the relative death rates are difficult to determine, given that the estimation is based on numbers from Norway and Denmark only. Their conclusion was therefore not based on firm evidence alone but on ‘good reasons’, with several ‘non-scientific’ considerations taken into account. In particular, the agency’s assessment ultimately focused on what is likely to ‘ring true’ to members of the public, as evident in its final justification for suspending AstraZeneca: “There is reason to believe that there is a high degree of skepticism about using the AstraZeneca vaccine in Norway and it is uncertain how many people would have accepted an offer of this vaccine now”.
It is worth noting at this point that governments and medical institutions are not the only narrators whose discourses influence public trust in specific vaccines or in vaccination in general. The high degree of skepticism acknowledged by the Norwegian Medical Agency is not triggered by the reported findings of specific trials alone but also by the impression of relative danger or safety created by a range of narratives circulating in public space, including narratives framed and reinforced by the media in different countries. Rone (2021), for instance, explains – based on her experience of being encouraged to take the vaccine on offer by German and Czech friends but actively discouraged from doing so by friends and family in Bulgaria – that Bulgarian media’s emphasis on uncertainties surrounding vaccination and the fact that they provide space for narratives that undermine trust in vaccines, including anecdotal stories “insisting a person gets much better immunity if they actually get sick”, have led to a high level of skepticism in the country. For a long period at the start of the pandemic, Rone tells us, “all Bulgarian mainstream media invited doctors who insisted that the virus is a simple flu, masks don’t help, we need to reach herd immunity”, whereas in countries such as the UK the media tend not to emphasize uncertainties, but rather “the benefits of vaccinating as many people as possible, starting from the most vulnerable groups” (ibid.).
Speaking on CTV on 4 May 2021, the Chair of the National Advisory Committee on Immunization (NACI) in Canada, Dr. Caroline Quach-Thanh, controversially admitted that risk cannot necessarily be calculated rationally: “If, for instance, my sister was to get the AstraZeneca vaccine and die of a thrombosis when I know that it could have been prevented and that she’s not in a high-risk area, I’m not sure I could live with it”. She was later criticized for fuelling fear and hesitancy through her statement. On an epistemological level, however, her unguarded response reveals the extent to which medical discourses depend on narrative rationality but at the same time struggle to make sense of it. While trying to defend, from the point of view of scientific rationality, the NACI’s decision to advise young people to wait for the preferred vaccine, she admitted – almost by a slip of the tongue – that what ultimately matters in practice is whether the decision to take or not take a specific vaccine is consistent with – speaks to – people’s lived experience and its potential risk to loved ones, rather than its overall risk assessment. This is about whether a person embedded in space and time and emotionally connected to others can “live with” a particular decision they have to make, not about assessments of risk in the disconnected and sanitized environment of the lab.
That all vaccines – indeed, all forms of pharmaceutical and medical interventions in general – carry a certain level of risk is not disputed by the scientific community nor by policy makers. But scientific rationality tends to weigh the benefits and dangers of this risk in the abstract, whereas narrative rationality works by weighing it in the context of a life lived with others. This explains why parents may be particularly wary of vaccination in general. As Larson (2020:5) explains, “the timing of childhood vaccines coincides with a number of childhood infections and at a time when parents are particularly focused on the evolving development of their child, thus making associations with vaccines more believable and helping to fuel the contagion of rumors”. Similarly, early signs of autism coincidentally tend to become noticeable around the same time as the MMR vaccine is given to children, “when all parents are focused on first words, first steps” (ibid.:11). The risks parents and other members of society associate with vaccines may thus not even be the actual risks science establishes and acknowledges, making the task of debunking them more difficult and complicated (ibid.:37). In what follows we will further unpack some of these complexities and explore ways in which understanding how narrative rationality works may give us better insight into how to address anxieties surrounding vaccination more effectively. But first a brief word about the role of characterological coherence in influencing public confidence in vaccines.
5.2. Characterological coherence and public confidence in vaccines
We saw in chapter 2 that characterological coherence is assessed on the basis of the perceived reliability (or otherwise) of specific characters associated with a given story. For many therefore the fact that Neil Fegruson – the British public figurehead for the argument supporting a strict lockdown to arrest the spread of Covid-19 – was found to have flouted the rules of lockdown to meet his lover meant that his advice on the necessity of lockdowns could no longer be trusted. In the case of vaccines and other pharmaceutical interventions, characterological coherence seems to work in more contradictory ways that are influenced by centuries of public opposition to vaccination, and by repeated attempts on the part of governments to suppress this opposition by passing laws that make certain types of vaccines mandatory. Examples include the Vaccination Acts of 1853 and 1867 in England, which made vaccination against smallpox mandatory for infants up to 3 months old and then up to 14 years old, respectively. Alongside these legal measures, institutions representing medical practitioners also have a history of censuring doctors who act in ways that undermine specific vaccination campaigns. The most recent example at the time of writing is Dr Gerard Waters, who was suspended from the medical register by the High Court of Ireland in April 2021 for refusing to vaccinate his patients against Covid-19. Dr Waters, who believed the vaccine to be “untrustworthy and unnecessary” (Cullen 2021) and “disagreed with how quickly the vaccines had been developed” (O’Connor 2021), described himself as a ‘conscientious objector’, thus invoking associations with pacifism and the Christian principle ‘thou shalt not kill’, used by the Quakers in particular to justify refusal of armed service in both World Wars. The framing of a narrative such as Dr Waters’s is important in influencing assessments of characterological coherence. In this case, powerful institutions are narrated as exercising their superior power against a principled individual who holds fast to his beliefs despite the adverse consequences to his career. This type of storyline appeals to particular values that many people hold dear, such as courage and integrity, which can provide ‘good reasons’ for believing dissenting rather than official, mainstream characters. The importance of such values in assessing characterological coherence is most evident in a much more high profile case associated with anti-vaccination movements: that of Andrew Wakefield.
Andrew Wakefield is a former physician who was struck off the medical register by the UK’s General Medical Council following the publication of a 1998 co-authored article in The Lancet, which posited a link between the MMR vaccine and autism. He continues to campaign against vaccination in general and has become a cause célèbre for the anti-vaccination movement, “a headliner for the vaccine-sceptic circuit” as Omer (2020) calls him in a review of The Doctor Who Fooled the World – an unauthorized biography of Wakefield written by Brian Deer, the investigative reporter who first broke the story about the 1998 Lancet article. For many people, Wakefield’s open censure by the medical community meant that he was no longer credible, and hence his arguments against vaccination could not be trusted. For others, as Larson (2020) points out, he became a symbol of integrity, of courage in the face of persecution, lending his claims believable whatever ‘facts’ are presented against them by the scientific committee. For anti-vaccine advocacy groups such as Generation Rescue who saw Wakefield in this light, he was “Nelson Mandela and Jesus Christ rolled up into one” (cited in Larson 2020:11). The Vaccine Resistance Movement (VRM) reinforces the impression of a Jesus Christ fighting persecution by raising donations “to finance his many court cases” (Larson 2020:12). This example suggests that assessments of characterological coherence are entangled, at least in some cases, with the exercise of institutional power and our tendency to admire and respect those who stand up to it. It is no coincidence, therefore, that anti-vaccination websites such as Children’s Health Defense, run by Robert F. Kennedy, Jr., feature extensive quotes from Mahatma Gandhi’s prolific writings against vaccination.
In the debate about COVID-19 vaccines and vaccination more generally, assessment of characterological coherence does not only apply to individuals but also to nations and institutions. Just as Bakan (2003) asked in his famous book The Corporation “if the corporation were a person, what would its personality be”, we all have a tendency to associate various types of institutions and governments with certain qualities, on the basis of which we become more or less trusting of their discourses. In our current context, this is particularly evident in the case of countries and institutions involved in the debate on global vaccine distribution, and more specifically, the Agreement on Trade-Related Aspects of Intellectual Property Rights (TRIPS) and its consequences for the Covid-19 response. In October 2020, India and South-Africa proposed a waiver to the intellectual property (IP) regulations defined through this agreement in order to give poorer countries access to the vaccine recipes and hence facilitate local vaccine production. The waiver was supported by 62 member states of the World Trade Organization (WTO), but several wealthy countries and pan-national institutions, including the US, the UK and the EU, initially opposed it. While insisting that they are all committed to work with low and middle income countries to achieve “equitable access to vaccines across the globe”, these key participants in the debate maintained that changing the IP rules would be unproductive, and as formulated in a statement by the UK government addressed to the TRIPS Council, would constitute an ”extreme measure to address an unproven problem”. Dangor and Sucker (2021), members of a group of academic lawyers which included an advisor to the South African Government on international relations, saw the response to the waiver as part of a more pervasive pattern of characterological incoherence that many have come to associate with wealthy countries; these tend to advocate global governance along paradoxical lines that are ultimately intended to ensure their own national interests:
… while committing to work with UN-led initiatives such as the Covid-19 Vaccine Global Access Facility (Covax), ostensibly aimed at equitable and science-led global vaccine distribution, the richer countries undermined such collective processes by practising vaccine nationalism – signing agreements with pharmaceutical companies to supply their own populations in a manner that reduces equitable access for others, often leading to forms of vaccine apartheid between countries … That the rich countries, which purport to champion global governance, acted contrary to and in a manner that undermined UN-led initiatives to create global governance bodies to allocate and distribute the vaccines based on science and ethics, underscores the sentiment in much of the global south that rich countries of the north instrumentalise the institutions of global governance in ways that are only beneficial to them.
Homer (2021) offers a detailed example of the type of behaviour that underpins perceptions of characterological incoherence in relation to specific rich countries in this context:
In June, the G7 countries pledged to donate 1 billion doses to “poor countries”, with the UK pledging 100 million of them. Yet so far, the UK has delivered only 5.1 million doses to Covax and sent just 10.3 million abroad in total. At the same time, the UK has actually taken doses from Covax that it has a right to (many other wealthy countries have waived their right to their share). In June, the same month it made its 100-million-dose pledge, the UK received 539,000 doses from Covax, more than double the doses Covax sent to Africa in the same month.
Similarly, in an analysis of the EU’s response to the waiver, Engebretsen and Ottersen (2021) explain how the EU paradoxically uses “global collaboration” as an argument against the global right to vaccine production. In claiming that “in a global pandemic only broad and equitable access to vaccines across the globe will ensure that the public health crisis can be tackled effectively, including in developing countries that have no production capacities” (emphasis added), the lack of production capacities in poor countries is presented as an indisputable fact, and global collaboration is assumed to consist of compensating for this lack by increasing vaccine access through means other than sharing the recipe with all nations. There is no room here for considering the possibility of mitigating the presumed lack by supporting the development of production capacities in poor countries. This logic “leads to a paradox” some have come to associate with the character of wealthy nations: in this particular context, “[l]ack of efficiency and capacity in the health service in poor countries is used as an argument for globally defined measures, and against contributing to the development of capacity and improving efficiency by allowing these countries to develop vaccines and treatment programs themselves” (Engebretsen and Ottersen 2021).
For some, then, arguments against sharing vaccine recipes – such as “IP protections provide incentives to companies to create new and groundbreaking technologies” (Lee and Holt 2021) – are bogus and consistent with the exploitative and dishonest character of rich countries and corporations intent on blocking the development of vaccine production capacity in poor countries. For others, it must be acknowledged, such arguments will continue to be perceived as not only rational and realistic but also as indicative of the responsible character of the governments that promote them and their laudable loyalty, above all, to their own populations. What has been negatively referred to in much of the literature and the media as ‘vaccine nationalism’ (Weintraub et al. 2020; Lagman 2021; Eaton 2021; Khan 2021; Mayta et al. 2021) has thus been explained by others in pragmatic terms as a case of governments like the UK’s sensibly “striking deals early because, without the upfront investment from rich countries, … vaccine manufacturers would not be making any vaccine at risk” (Torjesen 2020). The term ‘vaccine nationalism’ appeared in the late spring of 2020 and “is linked to agreements that reserve the bulk of emerging vaccines for a limited number of countries, traditionally in the developed world” (Rutschman 2020). The strategy adopted is not new – a similar pattern of rich countries hoarding vaccine production for their own populations was also evident in the case of the H1N1 flu in 2009 (popularly known as Swine flu). But the strategy and the narratives that underpin and justify it are now a “hallmark of negotiations during large-scale outbreaks of vaccine-preventable diseases” (ibid.). The feminist writer Rosebell Kagumire adopts the term ‘vaccine apartheid’ (rather than ‘vaccine nationalism’): this has gained some currency and is used, along with hashtags such as #EndVaccineApartheid and #EndVaccineInjusticeInAfrica, to demand that immediate action be taken to alleviate acute COVID-19 vaccine shortages (Kagumire 2021). Kagumire argues that the emergence of the Omicron variant in November 2021, which was initially assumed to have originated in South Africa (see Chapter 1), revealed the colonial undertones of the policies adopted by wealthier countries. Rather than praising the South African government for its transparency and working with it to address this new source of threat, the European Union, the United States and the United Kingdom decided to impose a banket travel ban on Southern Africa and neighbouring countries. “At the same time”, Kagumire points out,
the emergence of ‘variants of concern’ across the world (including Europe) and growing COVID-19 death toll among unvaccinated populations have not dissuaded the West from pursuing vaccine hoarding and vaccine nationalism policies.
By privileging some human lives over others, Western countries thus arguably prolong the pandemic and impact not just the lives and livelihoods of marginalized populations, but also of those they set out to protect.
