Policy Papers


Vaccine Hesitancy and ‘BAME’ Populations

Dr Gareth Millward |

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Executive Summary

  • The very act of separating ‘BAME’ communities from the general population for statistical purposes is a double-edged sword.
  • Public health authorities need to understand the specific reasons for ‘vaccine hesitancy’ among BAME communities – but they should also not ignore public health measures that have worked historically in building the high levels of trust in vaccination currently enjoyed in the United Kingdom.
  • The current framing of the vaccine hesitancy problem is rooted in the shift from ‘disease reduction’ to ‘vaccine-preventable disease eradication’ that occurred at the end of the twentieth century.
  • Public health must resist research and policy processes that fixate on identifying populations as ‘problems’ requiring ‘intervention’ if those processes lead to the imposition of surveillance and policing of communities that already distrust UK state authorities.

Introduction

‘They are not “hard to reach communities”’, wrote Professor Andrew Rowland on Twitter in February 2021. ‘They *are* seldom heard communities.’ ‘I will always remember in a conference hearing the phrase “we aren’t hard to reach, you just aren’t trying hard enough”’, agreed Julie R in response.

The COVID-19 pandemic has thrown much about Britain’s welfare state into sharp relief, but one of the most intriguing aspects of the government’s response to the crisis has been vaccination policy. Ostensibly, it has been the most successful aspect of the UK’s public health strategy, comparing favourably with other nations and drawing praise even from groups who were highly critical of earlier attempts to control the disease. Polling data in early 2021 also suggested that the British public had embraced vaccination, being more positive than other nations in Europe and across the globe about immunisation.

As with many health policies in Britain, however, some publics have been in a better position to benefit than others. In particular, polling data has shown BAME communities to be far less confident about COVID-19 vaccination than the ‘white British’ population. Actual statistics of vaccine uptake disaggregated by race have not, at the time of writing, been released. Further, there is not a singular ‘non-white’ experience of public health, the welfare state, or COVID-19 in Britain today. However, there are clear implications for the likelihood of such groups to receive the vaccine because of this increased ‘vaccine hesitancy’. The government, media, and public have therefore, rightly, expressed concern for the safety of these populations and of the country as a whole.

In many ways, this is a story of health inequalities that was most famously articulated in the 1980 Black Report. Poorer communities have less access to health services and structural discrimination means that the ones they can access have less effect. The economic disadvantage faced by non-white populations in Britain is well documented, stemming from discriminatory practices in employment, service provision, policing, justice, education, housing, and much more besides. Despite repeated warnings from the government that ‘the virus does not discriminate’, the risks of infection and the consequences certainly do. Even if vaccination were equitably distributed, a household in a BAME community is more likely to have members working in low-paid employment requiring in-person attendance. Their sick pay is more likely to be inadequate and they are less likely to have savings and so will be compelled to work even when ill. Their local hospital is more likely to be stretched to capacity.

But ‘the BAME question’ is further complicated by two key themes. On the one hand, the attitudes of various publics towards vaccination and public health authorities are clearly important. The statistical data show that populations categorised as ‘BAME’ have different experiences and opinions of health authorities, which will have implications for ‘compliance’ with public health advice. These differences must be taken into account when developing strategies to increase uptake, as indeed they were in earlier British vaccination programmes.

On the other hand, the very act of delineating ‘BAME’ populations is indicative of the public health’s historical struggle to ‘reach’ communities that fall outside its view of the ‘normal’, or ‘average’, population. This is not to say that public health authorities should ignore difference among British citizens and residents – far from it: ignorance of these factors has long stymied attempts to produce more equitable health outcomes. Rather, this ‘othering’ has become an explanatory as well as observational frame for public health that risks overlooking strategies that have historically ‘worked’ in increasing vaccine uptake among populations that have not been coded as ‘BAME’.

This paper is therefore concerned with this ‘othering’ and how it has appeared in British vaccination policy since the 1940s. It argues that we should be aware of the historic specificity of these approaches and reminds us that there was a time not so long ago when non-BAME populations were also categorised as (the contemporaneous equivalent of) ‘vaccine hesitant’. The framing of these problems is therefore a product of our present moment that goes beyond the obvious novelty and exceptional circumstances of a pandemic that requires mass adult vaccination. We must be mindful of the politics of disaggregating population data, the differences between disease control and disease eradication, and the structure of public health authority in the 2020s compared to decades past.

The arguments presented here come from my own research into the British vaccination programme since the Second World War and the power dynamics between publics and the public health authorities that seek to influence them. However, I am not a person of colour, nor would I be classified under the census as ‘BAME’. My goal here is to outline the processes of ‘othering’ and the need to work with marginalised communities on their own terms – but it is not the intention of this paper to specify what those terms are, or to suggest that there is a blanket approach to highly diverse populations.

 

‘Hard to reach’?

The success of vaccination programmes in Britain and around the world since the 1940s has meant that public health authorities have moved from a policy of infectious disease control to vaccine-preventable disease eradication. Measles provides a good example of this. When the vaccine was introduced in Britain in the 1960s, the government hoped to reduce hospitalisations and long-term health complications by significantly reducing morbidity. It was successful. By the 1980s, however, World Health Organisation targets as part of the Health For All programme showed Britain was lagging behind nations with similar gross domestic products per capita. The Thatcher government switched to the multi-dose measles-mumps-rubella vaccine (MMR) in 1988 to reduce the number of missed vaccinations by lowering the number of appointments parents needed to make with the family doctor. It also began to establish bureaucratic machinery to track and vaccinate young children, significantly increasing ‘compliance’ with the recommended vaccination schedule.

The upshot of these developments is that there are now specific targets set for vaccine uptake that are much higher and politically salient than in decades past. In 1950, the Ministry of Health aimed for 75 per cent diphtheria immunisation of infants. For measles, the target is now around 95 per cent, a reflection of both the high ‘R number’ of the disease among non-vaccinated populations and the potentially life-changing, even fatal, effects of measles in a significant minority of children. Therefore, any non-compliance is a problem for public health authorities, necessitating increased surveillance of those populations that fall below the targets. In turn, any failure to meet these targets must be justified (or, at the very least, analysed and explained). Repeatedly, when populations are disaggregated according to racial or ethnic background, non-‘white British’ groups have lower vaccination rates, even when accounting for other compounding factors such as economic class.

While there have been attempts to make explanations for these phenomena appear less outwardly judgmental than in previous eras – the euphemistic ‘hard to reach communities’ that began this essay being a classic example – understanding certain populations as ‘problems’ requiring ‘intervention’ has a long history in public health and in the British vaccination system. Public health practitioners and researchers still talk in terms of compliance and non-compliance; and while the UK no longer compels vaccination under penalty of fines or imprisonment, surveillance, policy formation, and implementation inevitably require a definition by authorities of ‘acceptable’ behaviour that is imposed upon those considered ‘deviant’.

This is politically sensitive with any group. Working- and ‘under’-class neighbourhoods were targets of public health interventions in the early twentieth century in part in response to the poor quality of recruits for the Boer Wars and moral concerns about ‘degeneracy’ among the white population. This justified attacks on the behaviour of people in poorer areas, even when ‘risky’ behaviours were a result of structural inequalities. This was not confined to the early 1900s. From the Contagious Diseases Acts that policed the bodies of women who were suspected of sex work, to the treatment of men who had sex with men in the AIDS crisis, via the eugenicist discourses of ‘overpopulation’, Britain’s public health policy at home and abroad has generated mistrust through its heavy-handed approach of imposing medical and moral standards of behaviour.

Even when interventions are less overtly charged with moral judgments, it is therefore impossible for public health practitioners to avoid being seen as part of these historical processes – especially when one considers the way minority or discriminated-against populations are policed by other cultural and political frameworks. ‘BAME’ as a category is, clearly, less judgmental than other ‘risky population’ labels such as ‘homosexuals’, ‘prostitutes’, or ‘drug addicts’. It is presented as a statistical delineation, borrowing from social survey data that have built upon comparable racial and ethnic definitions developed for the 1991 census. Yet it still relies on othering, and one that obscures the heterogeneity of the cultural and ethnic groups it encloses under the same heading. Regardless, the ‘compliance’ with vaccination is lower among this statistical group. It therefore follows that intervention is required – ‘salvation’, perhaps – from ‘those who know better’.

This has happened throughout Britain’s postwar vaccination policy. In some cases, delineation was tied to citizenship or country of origin. The control of smallpox before the late 1970s, for example, relied upon certificates of vaccination for people travelling from countries where the disease was endemic. The confluence of an outbreak of smallpox in 1961/62 and political debates around the Commonwealth Immigration Bill led to openly racialised discussions about Indian and Pakistani individuals and the diaspora. Even though the vaccination rate of the resident British population was far too low to provide protection, public health responses focused on border control, the reliability of doctors in foreign countries, and targeted local vaccination campaigns rather than attempting to increase uptake among the settled – coded as ‘white’ – population.

The idea that the threat of infectious disease to the British nation came from ‘outside’, or from communities portrayed as ‘outsiders’, can also be seen in the anti-rubella campaigns of the 1970s. Although rubella is mostly harmless to children and adults who contract the disease, it can cause damage to unborn children if it infects a pregnant person. The government sought to eliminate ‘congenital rubella syndrome’ (CRS) by vaccinating teenage girls so that they would be immune by the time they were likely to be pregnant (the vaccine itself could case these same birth defects). Alongside difficulties securing supplies and the controversy of the pertussis vaccine scare of the late 1970s, the Department of Health and Social Security found that rates of CRS were higher among the South Asian diaspora, in part because post-teenage immigration, language barriers, and cultural differences meant that the immunisation rate was lower in these communities. Health authorities targeted campaigns by producing information in languages such as Punjabi, Gujarati, and Urdu for publication in South Asian-language newspapers.

As CRS morbidity dwindled, the few cases that remained drew greater statistical scrutiny. In 1987, rates of CRS were 2.3 times higher in South Asian populations than among other groups. The introduction of MMR a year later helped contribute significantly to the UK’s overall immunity to rubella, and therefore reduced the rates of the disease among all demographics. The idea that immigrants might still pose a threat remained, however, due to lower immunisation rates in some countries and the idea of ‘importation’ of an otherwise-eradicated disease. With the ‘problem’ of CRS therefore statistically more significant in non-white populations, public health authorities increased surveillance and intervention in these areas.

Such approaches were built on the premise that diasporic communities might not have had the opportunity to receive the vaccine or were not educated about the risks of diseases. If they were indeed ‘hard to reach’ it was because the usual methods of communication and contact were ineffective. People who changed addresses regularly, did not speak English, were not embedded in the British school system as children, were not registered with a GP, did not have a telephone (mobile or otherwise), or did not consume English-language mass media were far less likely to interact with health care systems. British public health policy had improved the uptake of vaccinations significantly across the postwar period by using English-language advertising, school medical systems, personal correspondence, and follow up through GPs. Such systems are relatively cheap to maintain due to decades of expertise and existing bureaucratic structures. The labour involved in tailoring messages outside of these networks is substantial, both in terms of upfront costs and in terms of hiring or developing new expertise.

 

Confidence, Convenience, Complacency

This produced a climate with several compounding factors that have contributed to the reduced confidence in vaccination expressed in the opinion polling. Increased surveillance and intervention can breed resentment. The fixation on ‘BAME’ populations as reservoirs of disease or risky behaviour only serves to increase public health authorities’ desire to conduct that policing. This exacerbates the mistrust arising from racism in other authorities. This ranges from the anger generated by everyday policies – such as police justifications of ‘stop and search’ powers being disproportionately used on non-white populations – to large systemic scandals – such as the deportation of citizens from the ‘Windrush’ generation as part of the Home Office’s ‘hostile environment’ towards people not born in the UK. It is therefore unsurprising that there is mistrust between public health and BAME communities. Building that trust is difficult because the tools available to public health are designed for mass communication with an imagined majority population, reducing their ability to ‘reach’ those that most need reassurance. When all of this is combined with the other economic forces that lead to higher rates of illness – leading, again, to more desire to survey and intervene – and this is clearly a problem that is long running, self-perpetuating, deeply historical, and difficult to overcome.

Recent sociological and anthropological work on increasing vaccination uptake has focused on ‘vaccine hesitancy’. This considers the reasons why individuals or populations might not comply with demands from public health authorities to vaccinate themselves or their children. This work has attempted to find explanations that can be adapted to the global north and the global south and accommodate the significant differences within national settings. It considers three key pillars:

confidence;

convenience; and

complacency.

With regard to COVID-19, complacency is not the most significant issue. This is a new disease for which the consequences have been very apparent, despite the protestations of some. Rather, complacency is considered a problem generally in the global north where the success of vaccination programmes and health systems has reduced anxieties or knowledge about the consequences of once-deadly diseases. In Britain, for example, speculation that the whole-cell pertussis vaccine (1970s) or MMR (1990s) might cause damage in some children caused many parents to delay vaccinating their children. At the time, public health commentators noted that previous generations had seen the effects of both diseases when they were rife and were much more willing to present their children despite low-lying concerns about the safety of a new vaccine. Indeed, when there was a pertussis epidemic in the late 1970s (in part because of the decrease in uptake over previous years) there were shortages of the vaccine due to the surge in demand, just as there were queues outside GPs’ surgeries in Swansea when there were measles outbreaks in the early 2010s.

The most explicit example of this lack of complacency comes from the demand from British parents for the poliomyelitis vaccine in the 1950s. The Ministry of Health struggled to provide the vaccine quickly enough and had to import several million doses from the United States. This was despite the fact that there was a laboratory accident in 1955 which had resulted in live poliovirus being injected into children and causing a small outbreak of the disease. The ‘Cutter incident’ – even though it was a high-profile example of the potential dangers of vaccines – was not enough to dampen enthusiasm for immunisation on either side of the Atlantic. The fear of the disease and its effects on children and young adults outweighed safety concerns; anxieties that were quickly allayed after it became clear that the incident was an aberration and that millions of doses had been given without complications. That the general population is so supportive of COVID-19 vaccination, despite its novelty and lack of long-term safety record, says something about the relative trust in vaccination as a concept and fear of the health, economic, and cultural consequences of the pandemic.

Convenience could be a bigger problem. Although the government has been quick to establish a vaccine supply chain, centres for distributing the vaccine, and schedules for when it should occur, we know that access to health services can be a barrier for BAME populations. That said, such barriers have existed for other populations in the postwar era and were overcome with techniques that did not require the ‘othering’ of non-white communities as ‘problems’. For example, in the 1950s the Ministry of Health warned about the ‘apathy’ of British mothers when it came to diphtheria immunisation. Uptake had declined sharply at the beginning of the decade after a successful campaign during the 1940s had almost eliminated the disease. While initially very critical of mothers, particularly those in working-class areas, the Ministry soon realised that it got better results by making it easier for parents to take their children to appointments, reminding households about key immunisation milestones, and working with local media to promote the benefits of vaccination. Furthermore, the new pertussis vaccine proved popular with parents who were more concerned about that disease than diphtheria. Offering both at the same time, giving a dual benefit to making an immunisation appointment, proved beneficial.

Making vaccination generally more convenient was part of the rationale behind introducing MMR in 1988 and expanding the surveillance machinery as discussed earlier. But even when interventions needed to be more targeted, local Medical Officers of Health could be quite creative. Islington in the 1950s dispatched a van to play information films and offer immunisation against diphtheria to parents and children in neighbourhoods that were known to have low uptake. In Bristol when the poliomyelitis vaccination campaign extended to older teenagers and twenty-somethings, the local Medical Officer organised an ‘Injections-while-you-dance’ event to meet young people in the venues they were voluntarily going to anyway. Such interventions required the building of new networks with populations that had previously been ‘hard to reach’, either because they had not been traditional targets of vaccination (young adults) or because compliance had hitherto been taken for granted.

All of which brings us back to the central problem outlined in the opinion polling – confidence. Here, public health authorities – as with medicine and other authorities in Britain – need to build more trust in their expertise and motives with BAME communities. Indeed, as Guilaine Kinouani put it, ‘I dislike the term hesitancy, let’s drop it. We are talking about DISTRUST. … Using racism or colonial discourses to fix racism or colonial sequalae believe it or not, is not the way.’ Chisomo Kalinga further highlights the issue by using the Wellcome Global Monitor to show that ‘the proportion of people who agree … that vaccines are safe tends to be much higher’ than the global average, and it is in high-income regions where ‘there is less certainty about the safety of vaccines’. It is not ethnicity alone, therefore, that determines vaccine ‘distrust’ – rather the relationship between communities and the authorities demanding certain actions.

However, it might well be that, despite the best efforts the Department of Health and Social Care to build these bridges, the real catalyst for cooperation could be external and out of authorities’ control. In the late 1950s, for example, polio vaccination rates remained stubbornly low among young adults even with a significant advertising campaign. It was only when Jeff Hall, a professional footballer, died of polio after a match that young people started to present themselves for vaccination in large numbers. The surge actually caused vaccine shortages in some areas. The Ministry of Health capitalised on the publicity by working with Football League clubs to promote the vaccine at matches. The spur might not have been of authorities’ own making, but they had to take advantage when the opportunity was presented.

 

Conclusions

Drawing direct lessons from the history of the British vaccination programme is complicated with COVID-19. This is a pandemic disease which requires, at least in the first instance, the vaccination of adults. While the 1950s poliomyelitis vaccination campaign also required priority lists based on age and a gradual roll out to ration limited supplies, it started with the youngest children. In 2020, Britain started with the oldest adults.

That said, the wider history of public health and the knowledge gained from observing parents’ behaviours around vaccines is instructive. If BAME populations are more ‘vaccine hesitant’ than other populations, it is important to understand why that might be the case.

Public health authorities tend to focus on the ‘problem’ side of this ledger, and for understandable reasons. Given the focus on disease eradication, vaccination uptake below the target rate is a statistical aberration that requires intervention. Vaccination is presented as a choice, but one where there is clearly a ‘right’ answer. Not vaccinating is risky and irresponsible – a behaviour that must be targeted and eliminated.

However, as I argue in Vaccinating Britain, it is historically remarkable that vaccine confidence – or at least vaccine compliance – is so high among the overall population. This was not inevitable. It was the result of decades of building relationships with parents, instituting better follow-up bureaucracy, improving the efficacy of (and faith in) vaccine technology, demonstrating the personal and community benefits of immunisation, and proper investment in the educative and promotional machinery needed to convince the minority of hesitant parents to vaccinate their children.

Instead, then, public health officials should be aware of the historical specificity of this moment. The idea that COVID-19 can be eradicated is driving a desire to secure almost universal uptake. The humanitarian impulse of this should not be dismissed. There are clear benefits to BAME communities from herd immunity – and clear dangers if this breaks down or is never established. Those benefits need to be communicated in those populations’ own terms, though that is advice that could be given to any demographic, including the majority. However, the benefits of COVID-19 reduction should not be ignored. If immunisation rates can be improved, alongside other public health measures designed in conjunction with BAME communities to reduce transmission and impact, this would also constitute a public health success.

A fixation on ‘lower’ vaccination rates among any population relative to others could be counter-productive if it is used to justify more draconian surveillance and intervention. It will also fail if the targets are simply those who become visible to public health researchers. The increased visibility of anti-vaccination campaigners online, even before the pandemic, has been attributed to declining rates of MMR vaccination, for example. Vaccination rates well above 90 per cent would not, however, indicate that such strident views were widespread. They are certainly problematic when chasing compliance rates above 95 per cent, as such minority views that could increase any hesitancy present a challenge to health policy makers. Yet there is a question about how influential such ‘anti-vaxx’ groups are, and whether the public health profession has elevated them (wittingly or otherwise) to an almost mythological status to provide a rallying point for directing professional effort against a visible enemy.

One must also historicise the fixation on vaccination as the solution to COVID-19. Undoubtedly, the epidemiological data suggest that vaccination will be a crucial tool for reducing the burden of the disease, just as it has been for many other infections across the past century. The forms of governance in health care and general economics lend themselves to such solutions. There is a clear, measurable ‘cost benefit’ calculation that can be made from a vaccination programme versus ‘Disability-adjusted Life Years’, hospitalisations, and economic productivity. Governments have promoted preventative health care since at least the 1970s, and vaccination fits this bill perfectly.

Yet, it is obvious that this ‘magic bullet’ solution is especially palatable to a government that seems less inclined to invest in services and economic changes that would also reduce the risks and consequences of infection. Poor rates of sick pay, for example, have made it more difficult for potentially-infected people to isolate. The NHS was overstretched before the pandemic. There is also a clear statistical link between wealth inequality and uneven health outcomes. The Conservative government is unlikely to commit to investment in these areas as they do not fit the party’s political priorities. It is important to stress, however, that vaccination alone did not eradicate smallpox and poliomyelitis from these islands. It was one public health tool among many in the welfare state’s infrastructure.

As Sanjoy Bhattacharya argues, ‘simple-minded, over-generalised UK government messaging about its ethnic minority populations … lies at the heart of vaccine hesitancy’. If vaccination remains the political panacea and BAME communities become the ‘visible’ reservoir of lower uptake and higher COVID-19 morbidity, there is a real danger that political capital could be made from further stigmatising such groups. This will simply increase the mistrust between state authority and vaccine hesitant populations. As with smallpox in the 1960s, groups coded as ‘outsiders’ might be seen as the ‘cause’ of coronavirus, used to justify further discrimination in a range of services. Hard right welfare chauvinists will continue to argue that services should be focused on protecting British citizens (who are almost always imagined as the ‘white British’ census category). Surveillance will beget surveillance, reifying and further entrenching inequality in treatment. This will only increase the resentment that is a key factor in greater hesitancy in the first place.

Instead, an appreciation of the historical processes that have improved vaccine uptake and reduced infectious-disease morbidity among all populations can serve as a blueprint for those with more direct expertise and experience in delivering public health services on the ground. This should not ignore differences in culture, access to services, and behaviours between different demographics delineated by class, geography, ethnicity, religion, or whatever other lenses allow public health authorities to identify groups who are more at risk of disease than others. But it should avoid wherever possible labelling demographics as ‘problems’ requiring ‘saving’.


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Further Reading


Akel, Sofia. Insider-Outsider: The Role of Race in Shaping the Experiences of Black and Minority Ethnic Students (London: Goldsmiths, 2019). 

Aspinall, Peter J. ‘Ethnic/Racial Terminology as a Form of Representation: A Critical Review of the Lexicon of Collective and Specific Terms in Use in Britain’. Genealogy 4, no. 3 (September 2020). https://doi.org/10.3390/genealogy4030087.

Bivins, Roberta E. Contagious Communities: Medicine, Migration, and the NHS in Post-War Britain (Oxford: Oxford University Press, 2015).

Black, Douglas. Inequalities in Health (London: HMSO 1980).

Blume, Stuart. ‘Anti-Vaccination Movements and Their Interpretations’. Social Science & Medicine 62, no. 3 (February 2006): pp. 628–642. 

Dixon, K C, R Mullis, and T Blumenfeld. ‘Vaccine Uptake in the Irish Travelling Community: An Audit of General Practice Records’. Journal of Public Health 39, no. 4 (December 2017): e235–e241.

Durbach, Nadja. Bodily Matters: The Anti-Vaccination Movement in England, 1853-1907 (Durham: Duke University Press, 2005).

Heggie, Vanessa. ‘Lies, Damn Lies, and Manchester’s Recruiting Statistics: Degeneration as an “Urban Legend” in Victorian and Edwardian Britain’. Journal of the History of Medicine and Allied Sciences 63, no. 2 (January 2008): pp. 178–216. 

Millward, Gareth. Vaccinating Britain: Mass Vaccination and the Public since the Second World War (Manchester: Manchester University Press, 2019).

Mold, Alex, Peder Clark, Gareth Millward, and Daisy Payling. Placing the Public in Public Health in Postwar Britain (London: Palgrave Macmillan, 2019).

Public Health England. Disparities in the Risk and Outcomes of COVID-19 (London: PHE Publications, August 2020), esp. pp. 39–49.

SAGE Working Group on Vaccine Hesitancy. Report of the SAGE Working Group on Vaccine Hesitancy (Geneva: World Health Organization, October 2014).

Virdee, Satnam. Racism, Class and the Racialized Outsider (Basingstoke: Palgrave Macmillan, 2014).

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