PETER BICCAREGUI
Calling for a follow up report.
On the 5th April 2020, almost a year ago to the day I’m writing this letter, Belly Mujinga died at only 47 of COVID-19 (Croxford 2020). She was spat on by a man who claimed to have COVID-19. The CPS deemed that there was insufficient evidence to take the case to court, as the man provided a negative COVID antibody test (despite many pointing out the ‘coinflip’ accuracy of tests at the time). Whether Belly Mujinga was given COVID-19 by that man or not, her death was still preventable. She had sarcoidosis, which required her to take immunosuppressant drugs and was scared for her life due to her increased risk of death from COVID. However, due to slow action by the government, and the nature of her job, she continued to go to work and subsequently died. This death illustrates what it means to go ‘beyond the data’, to explore the ways that racism, in both personal interactions, and also in structural factors such as underlying health conditions and the nature of the jobs that BAME people perform in society, can create health disparity. The PHE report fails to do this; falling back on a narrow definition of evidence as collected through the scientific method, relegating the voices of BAME communities to a separate section where it fails to support their recommendations or testimony. For this reason, PHE must commission a new report that seeks to truly account for the lives lost and make concrete recommendations for the future.
In light of the evidence now accumulated, it is indisputable that BAME populations are more at risk of testing positive and have worse clinical outcomes from COVID-19 (Pan et al. 2020). The PHE report rightly acknowledges these disparities, attributing them to ethnicity and income independently, as well as occupation, access to healthcare due to historic racism and more. However, the PHE report fails to meaningfully investigate any of these factors or attempt to uncover their causes and the underlying conditions that precipitate these causes. Additionally, a new report must examine these factors not in isolation, but as a network of interconnected oppressions that pervade the lives of BAME people. These factors can be attributed to a system of structural violence that worsen health outcomes and lead to increased mortality (Hamed et al. 2020) (Farmer, 2004). It is simply not acceptable to suggest that there are an increased percentage of BAME people working essential, and therefore, more at risk, jobs without examining the social and historic factors that have led to this situation. The death of 28-year-old nurse Mary Agyeiwaa Agyapong on the 5th of April last year demonstrates this perfectly (Marsh. 2021). She died of pneumonia and COVID-19 shortly after giving birth. She ‘felt pressured’ to keep working into the pandemic despite being heavily pregnant and when she became ill, was sent home from A&E shortly before her death; the doctor later said she didn’t require oxygen was unaware at the time of increased BAME deaths from covid. Here, the her job as a frontline nurse, social pressure to keep working, and the doctor’s lack of knowledge on BAME health issues, are causal factors in her death. Additionally, the decision to send Mary home could be attributed to unconscious racial bias (Winter, 2021). The real possibility that racism within the NHS caused her death, as well as the deaths of many others, must be explored.
While analysis of data suggests that, when adjusted for underlying health conditions, the discrepancy in health outcome between BAME and white populations is less high, this seems to be an attempt to deflect the focus from ethnicity towards biomedical issues. It must be noted that BAME populations are already at higher risk of conditions such as heart disease and that, despite attempts to do so, these discrepancies cannot be attributed to genetic factors (Dessler, Bindon. 2000). These differences are due to the same structural factors, such as wealth inequality and stress, that led to increased deaths from COVID-19 (Singer, Rylko-Bauer. 2021). It is therefore important that PHE acknowledges this in their report and attempts to come to an understanding of why this is the case. I would suggest that a syndemic analysis would aid this understanding. Syndemics refers to the occurrence of multiple diseases in the same population, and examines the way that they interact and come to be in specific social contexts (Singer et al. 2017). In the case of COVID-19 and BAME populations, this would examine how co-morbidities are created as a result of structural violence and racism and how these same factors then contribute to an increased risk of catching and dying of COVID-19. The stakeholder section does suggest that this pandemic has, rather than creating health inequality, worsened what was already there. PHE must fully endorse this suggestion and investigate thoroughly the structural factors that have led to the health inequality more broadly.
It is particularly misguided that the PHE report frequently alludes to a genetic explanation for the increased mortality. Despite having no evidence that they play a role, genetic factors are mentioned three separate times. While it is surely not deliberate, it undermines the message of the report, distracting from the real social factors and suggesting that there may be something beyond the control of PHE causing the deaths. We know that there is more genetic variation within a single race than across them, and additionally that race is not a static, scientific division but instead dependent on social contexts (Goodman, 2016). It is, therefore, wrong to suggest that deaths may be caused by race, as defined by a genetic factor, especially when it is inserted as pure conjecture (Kuzawa, Gravlee. 2016). This discussion suggests that BAME people are genetically ‘weaker’ and continues a history of eugenics within the medical establishment. Within the new report, race should be understood as a ‘cultural idea with biological consequences’, examining how the structural violence that pervades our society allows racism to get ‘under the skin’, creating health divisions based on cultural categories (Goodman, 2016) (Kuzawa, Gravlee. 2016).
While it is commendable to include insight and suggestions from ‘stakeholders’, these insights should not be separated from the ‘scientific evidence’. By doing so, a hierarchy is created, favouring the ‘scientific’ above the lived experiences of BAME people, only legitimising their experience if it is foregrounded by facts. These insights must instead be used as valuable evidence in constructing an understanding of the situation and creating practical solutions. It is disheartening to see that while PHE included these stakeholder suggestions and insights, they ensured that they were not conflated with their own. Instead, PHE should evaluate and engage with these suggestions, working with communities to advocate strongly for change, rather than ‘listening’ but not responding to their requests. Information provided by communities can be invaluable in uncovering and tackling problems. For example, the lack of access of frontline BAME healthcare workers to PPE is greater than their white colleagues (Royal College Nursing. 2020). However, this has only been uncovered by engaging with people from those communities encountering the issue. The new report should integrate community insight as hard evidence and fully endorse their accounts and suggestions for how to improve healthcare outcomes.
The PHE report has, according to clinicians across the country, ‘failed ethnic minorities’, with many suggesting that all that the report does is tell them what they already know without suggesting any meaningful change (Iacobucci, 2020). PHE fails to back the stakeholder suggestions with any force and hasn’t explored done any work to understand the data that they supposedly have analysed.
A new report should:
- Integrate BAME voices as ‘evidence’.
- Emphasise voices and opinions of BAME people who are close to issues, knowing them through experience
- Not only let stakeholder voices be heard, but amplify and endorse their suggestions, working with them to implement solutions.
- Investigate individual issues in depth, seeking to find their root cause
- This means addressing the reasons that BAME people are more likely to use public transport to get to work, or why more BAME people work essential jobs that put them at risk.
- Widen the scope of the report to look to the future and the past.
- Explore how BAME health outcomes can be improved beyond the COVID-19 Pandemic
- Explore the impacts of COVID-19 on BAME communities beyond immediate health, focusing on factors that will cause health inequality into the future. E.g. reports that BAME people are more likely to lose their jobs during the pandemic (Sharma. 2021).
- Consider factors are linked, integrating an understanding of Syndemics and Structural Violence into the applied evidence collected.
- Make concrete, implementable suggestions that will help clinicians, policy makers, community leaders etc. improve the lives of BAME people and protect them from COVID-19
We are in the middle of a crisis where many lives have been lost. However, we must not ignore how this crisis is disproportionately affecting BAME communities. It is therefore vital that PHE conducts another report in order to tackle health inequality in the UK.
References
Daniel Pan et al. 2020. The impact of ethnicity on clinical outcomes in COVID-19: A systematic review. The Lancet. 23. England: Elsevier Ltd.
Croxford, Rianna. 2020. “Belly Mujinga’s death: Searching for the truth.” BBC Panorama. October 13.
Winter, Lottie. 2020. “We love the NHS. But that doesn’t mean it’s not racist.” Glamour. November 13.
Marsh, Sarah. 2021. “Pregnant nurse who died of Covid ‘unhappy’ to be sent home from A&E”. The Guardian. March 23.
Da Silva, Chantal. 2021. “Pregnant nurse who died with Covid-19 felt ‘pressured’ to work despite concerns, inquest hears”. The Independent. March 23.
Wan, Yize; Apea, Vanessa. 2021. “‘49% more likely to die’ – racial inequalities of COVID-19 laid bare in study of East London hospitals”. The Conversation. January 27.
Sharma, Shivani. 2020. “ COVID-19 may harm minority groups’ health even if they don’t catch the virus” The Conversation. September 2.
Goodman, Alan H. 2016. ”Disease and dying while black: how racism, not race, gets under the skin.” In New Directions in Biocultural Anthropology Edited by Molly K. Zuckerman and Debra L. Martin. 69-87. Hoboken, New Jersey : Wiley-Blackwell.
Singer, Merrill; Rylko-Bauer, Barbara. 2021. “The Syndemics and Structural Violence of the COVID Pandemic: Anthropological insights on a Crisis. Open Anthropological Research. 1:7-32. De Gruyter Open
Kuzawa, Christopher W.; C. Gravlee, Clarence C. 2016. “Beyond genetic race: biocultural insights into the causes of racial health disparities.” New Directions in Biocultural Anthropology. 89-105. Hoboken, NJ, USA: John Wiley & Sons, Inc
Dessler, Willian W.; Bindon, James R. 2000. “The Health Consequences of Cultural Consonance: Cultural Diomensions of Lifestyle, Social Support, and Arterial Blood Pressure in an African American Community”. American Anthropologist. 102(2):244-260. Oxford: American Anthropological Association.
Singer, Merrill et al. 2017. “Syndemics and the biosocial conception of health”. The Lancet. 389(10072):941-950. England: Elsevier Ltd.
Sangaramoorthy, Thurka; Benton, Aida. 1982. “Intersectionality and syndemics: A commentary.” Social Science and medicine. 2021: 113783-113783. England
Hamed, Sarah, Suruchi Thapar-Björkert, Hannah Bradby, and Beth Maina Ahlberg. 2020. “Racism in European Health Care: Structural Violence and Beyond.” Qualitative Health Research. 30(11): 1662–73. Los Angeles, CA: SAGE Publications
Iacobucci, Gareth. 2020. “Covid-19: PHE review has failed ethnic minorities, leaders tell BMJ.” British Medical Journal. 369:2264. England.