How our research on antimicrobial resistance & health inequalities became more personal
In 2019 I was awarded a Wellcome Trust grant. My project promised to look at the question of inequality and antimicrobial resistance (AMR) from different perspectives in the UK and USA. To this end I employed a postdoctoral research fellow, Dr Ulla McKnight and a PhD student, Eleanor Kashouris. The first year involved a lot of bureaucracy about access to NHS clinical settings. These negotiations were soon complicated by the COVID imposed restrictions the NHS was forced to implement and international travel restrictions that made the US leg of the original project an impossibility. My research team and I watched from the side-lines as the pandemic unfolded and new inequalities were discovered and old ones were further entrenched.
While much has been written thus far about inequalities in relation to COVID and conditions such as cancer – my initial feeling remained that we could find other interesting things to say about inequalities and AMR in practice. Importantly, my concerns and engagement with the research have been drastically impacted by my own cancer diagnosis in the second year of the project. Unsurprisingly, my illness has had an effect on all aspects of my life. However, what I would like to draw out here is the way in which the diagnosis and the care I’ve received has influenced my way of thinking about assemblages of care and the primacy of the disease, in my case cancer, that is ostensibly its object.
My sense is that cancer is not separate from COVID or from the practices of care and (biomedical) technologies that enact them – or the fear/risk of infection that are central to both and have become an all-consuming part of our lives. In this way, my concern and the concerns of my research team have become more personal and emotive and intricately intertwined with cancer, COVID.
In writing this I’m influenced by Ulla’s recently published article on race and HIV transmission through feeding practices, noticing how these were used by her respondents and their communities as a sign of HIV positivity. Importantly, however, this only happens when particular configurations of race, place and access to resources are part of the assemblage. Ulla argues that Black African and Caribbean migrant women living with HIV in England contend with HIVs that are linked to death despite having access to resources that have made HIV into a chronic illness. Thus, race and geographical space come to matter in ways that enact a terminal illness for racialised migrants in England.
Coming back to cancer, my treatment involved radiotherapy every day for six weeks last summer, and now chemotherapy over 12 cycles, with the ideal being one a month. Throughout my care, oncologists and other staff have been very interested in signs of infection whether visible or invisible. A visible infection, a sore toe, which I have lived with for years, led to chemo being delayed last autumn. Thus, a minor persistent or perhaps resistant infection, that I have never paid much notice, and the threat of further infections impeded the care I needed to live. I would of course like a comprehensive explanation of this, but it mainly seems to come back to the ‘risk’ of infection, according to booklets given to me by various charities.
As a researcher and patient this explanation does not suffice. In an attempt to get beyond the booklet explanations, I have been seeking out academic literatures that could give me insight into my current situation. How can the risk of infection out way the anticipated risks of not immediately treating my cancer? Like this, Al-Shamsi and colleagues advise on the administration of “…anticancer therapy for cancer patients with infection or at risk of infection.” They contend that:
“During a pandemic, the potential for benefit with chemotherapy would be unchanged, but the risk of harm would be increased to a degree that cannot be readily quantified”.
My pre-cancer diagnosis, COVID pandemic self would have been drawn to the ambiguity of this statement, relishing the ways in which I might explore how notions of risk and harm may come to be quantifiable. But as I sit here, waiting once again for life-extending treatment, the opaqueness feels unhelpful. How did the riskiness of my toe come to override the risks of not having chemotherapy?
As Ulla and I sit in our separate rooms writing this text together I am aware how many things not apparently related to cancer play a part in my embodied experience of being ill. Friendships, intimacy and associated practices of care can no longer take place without insurmountable risks.
In this context, I have found an article by Llewellyn and colleagues’ that ethnographically explores the experiences of people diagnosed with brain-tumours useful. They described how their respondents made sense of their options in relation to both care and Clarke’s concept of ‘healthscapes’. They were attracted to the concepts “…focus on individuals within broader social networks and the multiplicity of meanings and possibilities within imaginations”. Ironically, I greatly enjoyed this article in my pre-cancer life. Now, I comb through it looking for clues that might help me better understand my embodied experience of cancer and my treatment options and trajectories.
Llewellyn and colleagues argue that Clarke’s appeal is in her attempt to capture health and medicine alongside notions of family, religion, economy, polity and media in ‘kinds of assemblages… infrastructures of assumptions as well as people, things, places, images.’
Through his research, Llewellyn followed the journeys of sixteen people with a primary brain tumour identified by diagnosis, gender and age. In addition to informal conversations recorded in fieldnotes, Llewellyn also interviewed patients, yielding fifty semi-structured conversations about life with a brain tumour, ideas about care, and decision-making. Llewellyn also attended patients’ clinical appointments as they met with surgeons, oncologists, neurologists, nurses and others to get clinical tests, discuss results and treatment options, clinical trials, and did participant observation. The article was mainly based on interviews with John (who had a non-malignant tumour) and Matthew who had glioblastoma, a cancerous and aggressive tumour. The paper discussed their difficulty in accessing trials or research studies of new treatments.
To sum up then, my positionality as a white researcher of medical technologies and processes makes me acutely aware that the outcome of my disease is entirely connected to the healthscapes that determine what my cancer may become. These do not include the experience of racism, insecure migratory status or access to free expert care. I am not the most likely to suffer from inequality in cancer or other forms of care, Yet the cancer care I have received results if anything with potential under-treatment. In these circumstances, access to trials and indeed to relatively normal care has not always felt straightforward.
About the authors: Catherine Will (@will_catherine) is one of the founding editors of the Cost of Living blog. Ulla McKnight (@McknightUlla) is a Postdoctoral Research Fellow at the University of Sussex working on the Wellcome Trust funded project Marginalisation and the Microbe.