The current ‘end of AIDS era,’ referred to as Treat All in policy circles,is characterized by the primary aim of identifying and putting all HIV-positive people on antiretroviral treatment (ART) as quickly as possible following diagnosis (Kenworthy, et al 2017). Under Treat All, life-long pharmaceutical treatment is increasingly initiated in healthy bodies as part of a broad move to normalize ART and decrease population level viral load to prevent the spread of HIV. Sometimes those bodies resist the drugs, resulting in physical side effects ranging from annoying to unbearable; other times, the virus resists the drugs, and bodies fail to thrive. Some bodies never experience the drugs because they are still not accessible, or because those who are diagnosed fear social and toxic, embodied consequences associated with the medicines, or because they choose to delay committing to a chronic relationship with biomedicine.
In eastern Africa, HIV has become endemic. It is familiar and manageable. But while the virus has become something that people ‘live with’ (Brives 2017), the landscape of HIV care has become less predictable over time. In this essay, we extend the focus from chronic living, which alerts us to the constant creative and experimental ways in which people with chronic conditions and their caregivers go about their daily lives, to chronic caring in the context of unpredictable care landscapes. Core to chronic caring in eastern Africa is adapting to the instability of the standards of care for HIV, coupled with the predictability of un-sustained health care programs in donor-driven contexts. This requires another kind of tinkering (Mol, Moser, Pols 2010:15) than that required in chronic living with HIV. It requires a tinkering with protocols, the creative translation of guidelines into the actual work of care in underfunded settings where health care is often patched together. Much of the work of care goes unnoticed or is undervalued. This, combined with unexpected shifts to program funding and objectives contribute to a demoralizing sense of precarity among caregivers.
Although concerned elsewhere in our work about the social, economic, and psychological experiences of living chronically with HIV (De Klerk & Moyer 2016), in this essay we foreground how those engaged in caring for those infected with HIV contend with the embodied chronicity of their patients.[i] The bodies of people living with HIV grow, change, develop co-morbidities, and fail over time. Those living with HIV and their caregivers recognize that the human-HIV relationship is a chronic one at best. In absence of a cure, those infected hope to come to an agreement with the virus, to host it with minimal physical suffering, while those providing care hope that their patients respond well to treatment and remain stable for extended periods of time with minimal medical intervention.
While caregivers and patients strive for long-term human-viral symbiosis, they find themselves in landscapes of care, where new policies and programs are introduced at the whims of donors or research institutes, and others are cut for fiduciary reasons or because, as demonstration projects, they were conceived as temporarily funded experiments, intended to motivate local ownership and investment. These changing on the ground conditions mean that those responsible for providing quality chronic HIV care must be willing and able to adapt their care practices. Our observations draw mainly on our combined ethnographic research on HIV treatment programs in eastern and southern Africa, but our arguments concern the wider conditions of instability in care landscapes. The increasing need for caregivers to be flexible extends to other locations where health care must be patched together, where healthcare work is becoming increasingly deformalized, and where the payment for care work is increasingly linked to performance indicators – so, pretty much everywhere.
In most African health care settings, informal and lay caregivers, many of whom are HIV+ with years of on-the-job training, do most of the work to link patients to care in HIV treatment programs (Moyer 2014, Dlamini-Simelane & Moyer 2017). As HIV counsellors, they test and identify new patients and encourage them to start treatment. As community health volunteers, they track down and follow up with those who do not start treatment quickly enough and those who stop coming to the clinic for regular monitoring. And, as contact tracers, they track down the sexual partners and biological kin of those who have agreed to take part in index-testing initiatives. These jobs require caregivers to understand the social worlds of their patients and to be able to translate complex biomedical and epidemiological reasoning into everyday logics.
Recent years have seen the rise of new indicators to count the success of treatment programmes (such as the ‘missapp’, the missed appointment) and of new strategies to identify new people living with the virus (such as index-testing). The missapp as an indicator entered the HIV treatment scene as a means of identifying earlier people at risk of falling out of care and involves checking registers, calculating days since final appointment and tracing those categorized as missapp, work that falls to lay counselors. Index-testing relies on identifying and tracing people who are most likely to be infected with HIV because they are biologically or sexually related to someone already known to be HIV positive. This approach is lauded in public health and development circles because it increases the likelihood of identifying new cases, also known as yield. What is not widely discussed is that this type of contact tracing is a less expensive if more labor-intensive form of care. It is less expensive because it requires fewer testing kits and fewer reagents. And although it is more labor intensive, requiring contact tracers to navigate concerns of privacy, individual rights and public health skillfully, lay care workers are paid more for testing someone who is HIV positive than for someone who is HIV negative, even if the time and effort put into conducting the test is the same.
At a research site in rural Tanzania, a lay counselor stated: ‘the index never lives near the tarmac’. This seemingly simple statement captures the complexity of the work of tracing in remote rural locations not reached by paved roads, where lay counselors need to find people who might be highly mobile and unreachable by phone. Their labor is often made more difficult by a lack of funding for transport beyond the tarmac, or seasonal floods that close off entire villages for weeks at a time. Quite often, doing this work effectively leads to out-of-pocket expenses for phone calls and public transport. Index-testing and missapp tracing also requires careful navigation of tensions and social responsibilities in families. This work of tracing requires time. Time to reach people and time to build trust. It also often requires caregivers to blur boundaries between professional and personal lives. In these settings, where the goal is to seduce people into HIV testing and treatment regimes that may have been intentionally declined, good care is slowing down and listening, while being creative and attentive to specifics, work that becomes invisible in the number-based reporting norms and is in stark contrast with the sense of urgency embedded in indicator-driven protocols. And increasingly, those doing this work are paid using these performance-based indicators: number of people tested, enrolled in treatment, tracked down, or missing appointments.
In the opening to this series, Wahlberg and colleagues state that chronic living is often creative and experimental but that possibilities for experimentation are limited to situations of socio-economic scarcity and poor health care (2020). While we certainly support the call to create better working conditions for health care providers worldwide so that they may experiment in relative comfort, in this essay we would like to push them and others to consider how creative one must be to provide good care under conditions of scarcity. Perhaps the world of HIV care we encounter in our work is unique, where state of the art, comparatively well-funded evidenced-based public health measures operate within a chronically under-funded health system. Good chronic caring for HIV requires near constant tinkering in a context of shifting programmatic requirements and unpredictable funding streams, but it also requires access to state-of-the-art knowledge. Standards of care and social interventions are rapidly changing in response to new scientific insights. Creative thinkers, desiring to stay on top of the latest knowledge are attracted to this work. It is, in fact, one of the main reasons given by peer and other lay caregivers for choosing their field. Armed with knowledge, highly creative caregivers are able to improvise under conditions of scarcity, in dynamic settings that are at the same time endemic (Livingston 2012). To assume that experimentation is unlikely in such settings presumes that creativity can only flourish in contexts resembling those found in a few places in the global north and to ignore widespread evidence of creative modes of chronic living and chronic caring widely documented elsewhere.
Josien de Klerk is Associate Professor of Global Public Health at Leiden University College, The Hague. Her research interests include ageing, chronic illness, HIV/AIDS, informal care, self-care, wellbeing and enhancement, well-being through the lens of kinship-studies and critical global health.
Eileen Moyer is Professor of Anthropology of Ecology, Health and Climate Change at the University of Amsterdam. Over a range of projects, her research has included work on: HIV, gender, sexual health and community engagement in urban Africa; gender and sexual and reproductive health interventions in the global south; and ecological well-being, health and climate change. She is a co-founder and between 2014 and 2019 was co-editor of the open-access journal Medicine Anthropology Theory.
“Chronic living: ethnographic explorations of daily lives swayed by (multiple) medical conditions” is a series being published alongside the Chronic Living conference, as part of the VITAL project. The series is edited by Ayo Wahlberg, Jieun Lee, Anna Mann, Arseli Dokumaci, Natasja Kingod, Marie Kofod Svensson and Laura Heinsen.
Brives, Charlotte (2017). From Fighting against to becoming with: viruses as companion species. hal-01528933
Dlamini-Simelane, Thandeka and Moyer, Eileen ( 2017) Task shifting or shifting care practices? The impact of task shifting on patients’ experiences and health care arrangements in Swaziland. BMC Health Services Research 17:20. DOI 10.1186/s12913-016-1960-y
Kenworthy, Nora, Matthew Thomann & Richard Parker (2017). From a global crisis to the ‘end of AIDS’: New epidemics of signification, Global Public Health,DOI:10.1080/17441692.2017.1365373
De Klerk, Josien & Eileen Moyer (2016): “A body like a baby”: Social self-care among older people with chronic HIV in Mombasa, Medical Anthropology,DOI:10.1080/01459740.2016.1235573
Livingston, Julie (2012) Improvising Medicine: An African Oncology Ward in an Emerging Cancer Epidemic. Durham: Duke University Press.
Moyer, Eileen (2014) Peer mentors, mobile phone and pills: collective monitoring and adherence in Kenyatta National Hospital’s HIV treatment programme, Anthropology & Medicine, 21:2, 149-161, DOI: 10.1080/13648470.2014.925083
[i]Here we break from the convention of referring to people with HIV in biomedical contexts as clients to underline our arguments about patient and health care worker relations and care.
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