An understudied disease, little research thus far has explored responses to Buruli ulcer and quests for therapy from biosocial perspective, despite reports that people seek biomedical treatment too late. Taking an inductive approach and drawing on long-term ethnographic fieldwork in 2013–14, this article presents perspectives on this affliction of people living and working along the River Nile in northwest Uganda. Little is known biomedically about its presence, yet ‘Buruli’, as it is known locally, was and is a significant affliction in this region. Establishing a biosocial history of ‘Buruli’, largely obscured from biomedical perspectives, offers explanations for contemporary understandings, perceptions and practices. We must move beyond over-simplifying and problematising ‘late presentation for treatment’ in public health, rather, develop biosocial approaches to understanding quests for therapy that take into account historical and contemporary contexts of health, healing and illness. Seeking to understand the context in which healthcare decisions are made, a biosocial approach enables greater depth and breadth of insight into the complexities of global and local public health priorities such as Buruli ulcer.
A so-called neglected tropical diseases, Buruli ulcer occurs in rural areas with limited access to safe water, basic medical care and education [1]. Caused by Mycobacterium ulcerans, similar to mycobacterium that cause leprosy and tuberculosis, people affected develop nodules and other skin lesions typically on exposed areas of the body [1,2]. It is estimated that one third of early nodules resolve spontaneously [3]. However, severe long-term complications can develop from the toxin-producing bacteria with aggressive lesions causing permanent damage such as scarring, contractures and destruction of underlying bones. Outbreaks have occurred following ecological changes [4], and while the mode of transmission is not entirely clear, it has been associated with practices such as farming in swampy areas and along slow-moving water bodies, and various hygiene and wound care techniques [1,2, 5,6]. The complexities that are not adequately understood through biological and epidemiological research clearly underscore the entanglement of biological and social dynamics of transmission. Following a visit to West Africa in 1997, Dr Hiroyoshi Nakajima, then Director General of the World Health Organisation (WHO), declared Buruli ulcer an emerging disease and the Global Buruli Ulcer Initiative was launched in 1998 under WHO directive. Rather than interrupting transmission, which is poorly understood, the public health control strategy focuses on early detection and access to biomedical treatment [7]. However, there are implementation challenges. For instance, while the gold-standard is laboratory diagnosis, in practice a clinical diagnosis is often made based on presentation and exclusion of other skin diseases. And while the current recommendation for managing early lesions is an eight week course of antibiotics used in tuberculosis treatment and for severe lesions includes surgical intervention (amputation of the limb and skin grafting), the disease tends to occur in remote, rural areas where these facilities remain lacking. Scope for control is further limited by paucity of data representing burden and patterns of disease. Reporting to the WHO has been in place since 2002, but evidence from West Africa where Buruli is highly endemic suggests significant under-reporting. In 1999, a national case search in Ghana identified 5619 patients with Buruli lesions (3725 active lesions and 1894 healed lesions) [8]. This is a substantial number given that from 2002 to 2012, between 2632 and 5867 cases were reported annually for Africa as a whole. Likewise in Nigeria, which typically has not reported cases, significant numbers were found in a case-finding study [9]. Epidemiological and clinical studies have thus pursued case-finding and mapping exercises. Furthermore, it is often reported that people present late for biomedical treatment, when severe ulcers have developed. Thus, one aim set by the WHO was to: “reduce the proportion of category III [disseminated/severe] lesions from the 2012 average of 33% cases to below 25% by the end 2014 (sic) ” [7, p. 2]. Evaluations of access and barriers to biomedical healthcare report problematic healthcare seeking behaviours [10] providing explanations including stigma [11], knowledge and non-biomedical explanations of disease and forms of healing [12]. Yet, there has been little social science and anthropological research on this affliction. Noticeable exceptions include Grietens and colleagues’ [13] research unpicking the oversimplification between the role of local beliefs and treatment-seeking for Buruli in Cameroon, foregrounding an exploration of local knowledge. Whereas Giles-Vernick and colleagues [14] demonstrate additional insights to biomedical models of Buruli transmission by exploring ethno-ecological histories in Cameroon. More recently, anthropological insights have been incorporated into developing models for improving Buruli ulcer policy in Cameroon [15]. Northwestern Uganda is an intriguing area to study the historical and contemporary significance of Buruli ulcer. Historically, Buruli was significant in the region of northwestern Uganda along the River Nile. Ulcers were described in Uganda and Zaire (now Democratic Republic of Congo) by Sir Albert Cook in 1897 and Kleinschmidt in the early twentieth century [3]. Interestingly, a study of genetic diversity in Africa reports two main strains of Buruli with different lineages [16]. The Ugandan strain was one of the oldest in Africa (present for centuries), while the second strain (common in Gabon, Benin and Cameroon) appears to have been introduced in the 19th century–which the authors attribute to the upheaval of the neo-imperialism period. While Buruli primarily occurs in African countries, it was in fact first identified as Bairnsdale ulcer in Australia in 1948 and re-named from 1961 when many cases were reported in the then Buruli District (now Nakasongola District) of Uganda near Lake Kyoga [17,18]. During the 1960s and 70s, the Uganda Buruli Group described the disease among recent Rwandan refugees who settled near the River Nile [19]. At a similar time, Barker [17,20] also associated the disease with swampy areas along the Nile, suggesting that the disease spread and became endemic in areas of Uganda after floods in 1962–64 created new sites of permanent swamps. Contemporary reported data suggests Buruli has declined as a public health concern in Uganda. In 2002, Uganda reported 117 cases of Buruli ulcer to the WHO (2632 from Africa, 3269 globally) compared to three in 2009 (5029 from Africa, 5084 globally) [21]. Since 2010, Uganda has not reported data, but previously the numbers were relatively low. However, as literature from West Africa suggests, we clearly cannot rely on reported healthcare data to represent presence of disease let alone estimate prevalence [8,9]. This became evident during long-term inductive, iterative, ethnographic fieldwork in Moyo and Adjumani districts, northwestern Uganda, in 2009 and 2013–14, which this article is based on. In the two districts, while largely unseen at the health centres, Buruli ulcer was well-known among people along the river. What explains these diverging accounts? This article addresses this question, taking as its starting point the perspectives of people vulnerable to (and affected by) neglected diseases such as Buruli ulcer. Echoing broader calls for biosocial approaches integrating insights from across the biological and social sciences [22,23,24,25], this article builds on strands of interdisciplinary scholarship, bringing historical biosocial insight to understandings of afflictions and treatment practices. Drawing on long-term inductive, interdisciplinary fieldwork on neglected tropical diseases in Moyo and Adjumani districts in northwestern Uganda, this article presents an analysis of the social responses to an affliction known locally as ‘Buruli’ (italics are used throughout the article to distinguish the vernacular use of the term, as opposed to the common biomedical name, Buruli ulcer which refers to the biologically defined Mycobacterium ulcerans), along this stretch of the River Nile. This suggests a more complex picture, and highlights the disparities between the framing of global health priorities and perceptions on these priorities by people affected. It challenges the oversimplification and problematisation of healthcare-seeking, and drawing on historical and contemporary insights, demonstrates the pragmatic and empiric nature of quests for therapy.
Moyo and Adjumani districts are situated along the River Nile bordering South Sudan. In the most recent census, 2014, the population of Adjumani was 225,251 (116,953 females, 108,298 males) and in Moyo was 139,012 (70,072 females, 68,940 males) [27]. The people are predominantly Madi (and identify as Christian, particularly Catholic, but also Protestant and, more recently, Pentecostal). However, in Obongi County of Moyo they identify with a number of neighbouring ethnic groups, including Lugbara or Kakwa related groups. A mix of languages are therefore used, but Madi is most widely spoken. The majority of people in Moyo and Adjumani are subsistence farmers, or fishing-farmers—along the river the land is particularly fertile and the fish business is important economically for men and women. People along the river are referred to as meri ti ba (people of the river) in Madi. It is difficult to assess the exact population along the river, with ongoing flux of people into and out of the fish business. The northwestern region of Uganda has a long history of social upheaval, political and economic marginalisation [28,29]. Slave and ivory traders were active in the nineteenth-century, and subsequently the region was under various colonial and protectorate rule. During the colonial period, in now Moyo and Adjumani districts (then Madi sub district, named after the predominant ethnic group), there were a number of colonial public health campaigns, for instance for yaws and sleeping sickness. From the late 1970s, the time of decolonisation and Independence, through to the 2000s, there have been ongoing conflicts in the region causing an almost constant flux of refugee movements across the border with now South Sudan. During fieldwork, in December 2013, conflict broke out in neighbouring South Sudan leading to an influx of refugees into Adjumani and subsequently Moyo too. Over time, people have experienced intermittent and long-standing presence of various NGOs including medical and humanitarian organisations. Aside from this, biomedical healthcare has largely been provided through both government and private facilities. Each district has a government hospital in the main town, which for some areas along the river is an hour’s motorbike ride away. Health centres at parish level are typically run by nursing staff and stock essential medicines. At sub-county level they also have some laboratory facilities. In addition, there are numerous private facilities, particularly drugstores, in trading centres. Thus in most areas along the river, there is some access to biomedical healthcare, although what is provided varies and is often limited. Alongside the public health system, there have been numerous disease-specific health programmes, for vaccine-preventable diseases, malaria and a number of the neglected tropical diseases. In contrast to other neglected diseases, such as intestinal helminths, onchocerciasis, human African trypanosomiasis and lymphatic filariasis, there has not to date been a specific public health programme for Buruli. Rather, the ‘strategy’ relies on patients self-presenting to the healthcare system—referred from the village health team or local health centre to a district or regional hospital (Arua, Gulu or Kampala). As well as biomedical healthcare facilities, therapies for various afflictions are provided by local herbalists and witchdoctors, as will be discussed in further detail below.
A review of various field studies carried out in the 1960s and 70s in now Moyo and Adjumani districts shows that Buruli ulcer was a significant public health concern [17,19,30]. Clancey and colleagues [19] reported four active cases from Moyo; and Lunn et al [30] reported ‘burnt out cases’ suggesting earlier infection that had resolved. While Barker wrote: “on the west side of the river [Moyo], where the land is hilly, the disease is confined to the river’s edge; but on the east side [Adjumani], where the land is flatter, the disease extends up to 10 miles from the river” (p. 43) [17]. He proposed that there was no evidence to suggest the onset of Buruli from more than 10 years prior to the 1962 flood (p. 872). The findings presented in this article reflect this time period—a number of adults interviewed were born in the early and mid-twentieth century. Those who reported to have had Buruli were affected from the 1960’s onwards, with the highest proportion affected in the 1990s. Yet, oral accounts suggest that these forms of ulcers clearly had a much longer history. Most people we spoke to, including elders and herbalists who had grown up in Madi region during the 1950s and 60s, used the term Buruli (although ‘lupi lupi’, referring to a swelling, was also used and understood by other regional language groups). However, it seems that prior to this period, similar ulcers were known by other names. Lunn et al [30] noted the terms used for ulcers as ““juwe okoro” or “bile okoro”, meaning “the sore that heals in vain”” (p. 278). A herbalist born in the 1920s recounted to me that when he was training, the wound that is now known as Buruli was previously called macodo—translated as ‘abscess’ in a Ma’di dictionary compiled in 1941 [31]. He described macodo as ‘a boil which swells bigger and is more serious’, reporting that it was treated in a similar way to Buruli today. Likewise, another herbalist, born in 1939, recalled: Other skin lesions (nodules, boils, ulcers and wounds) were differentiated from Buruli and literature and documents from the twentieth century confirm that various forms of ulcer were endemic in northern Uganda. In the early twentieth century, ulcers were a preoccupation for the British administration in Uganda. Vaughan [32], for instance, describes the moral panic stemming from the high rates of ulcers among Bugandans, likely misinterpreted as syphilis, a sexually transmitted infection. On the other hand, in northern Uganda, treatment campaigns were for the non-sexually transmitted form of the disease, yaws (p. 138). In a 1927 sleeping sickness campaign in Moyo it was reported that there was a “great number of cases of Yaws and Ulcers that came up for treatment” and during two months they administered nearly 2000 injections for these “often repulsive” ulcers [33]. Interestingly, during fieldwork in 2013/14, an elder described a disease that ‘bent the bone’ (seen with yaws) which he differentiated from Buruli, reporting that it had not been seen for a long time. The term Buruli, adopted by Madi to encompass particular ulcers, was thus differentiated from other skin lesions. While the vast majority of the swellings and ulcers discussed and identified as Buruli had not been diagnosed bio-medically, as I will demonstrate, there are consistencies in how Buruli and Buruli ulcer are identified. People’s experiences and understandings of Buruli resonate with biomedical understandings of Buruli ulcer, and the majority of people, although unsure, used ideas of worms (obu) to explain it. This may be related to the focus on ‘worms’ in contemporary public health campaigns, particularly controlling intestinal helminths through mass treatment campaigns to ‘at risk populations’ including fisherfolk. In 2009, when I first visited this area of Uganda, fishermen often lamented, ‘we are the rubbish pit for worms! ’ In 2014, a herbalist explained Buruli transmission: Many supported the deduction that Buruli was found along the rivers or in muddy places. In this sense, it was very much associated with fishing areas and practices. One elder and Beach Management Unit member wondered if Buruli was acquired from fishermans’ tools used in the past, such as hooks and nails. A few people recounted how the disease came from Buruli district, as this 70 year old herbalist explained: One hypothesis was that it was ingested by eating mudfish. When gutting mudfish, women reported seeing small white worms in the stomach or gills, which some deduced might be the cause of Buruli. This was supported by seeing small white eggs, presumed to be those of the worms, in the lesions when the herbalist treated Buruli. Interestingly, mudfish are found in the Nile and its smaller tributary rivers and in the rainy season men go with spears to these areas to catch the fish. Given that transmission of Buruli occurs along slow-moving water bodies, this may be an activity that makes men vulnerable to infection. The empirical basis to these deductions is clear. Yet, as with scanty biological explanations there was still an air of uncertainty and many unknowns. One male elder herbalist reflected: However, unlike in West Africa where magical-spiritual explanations appear to be much more prominent [11], in Moyo and Adjumani, these explanations did not appear to be as pervasive as one might expect. In contrast to witchcraft or local poisoning, herbalists were clear that Buruli could not be inflicted by another person. Even in the case of severe, late ulcers, the majority of people identified these as Buruli, although the distinction was not clear cut. A minority reported that these ulcers can be caused by erua hwe, a form of local poisoning; however this was an exception rather than the norm. Herbalists reinforced that these lesions occurred when they had not been treated in time and denied they had ever been a form of witchcraft or local poisoning. However, one elder herbalist had this to say of late ulcers: He went on to say that he had recently seen a woman with this form of affliction. On the other hand, others described more distinction between the different afflictions. For instance, a 70 year old herbalist reported: Another 52 year old man who had Buruli when he was 14 reported that he had not seen late ulcer and when asked about local poisoning and erua hwe, replied: In light of these different explanations, a 62 year old woman who had experienced Buruli in her 20s, reflected on how treatment informed the distinctions: Other forms of ulcer-causing poisoning also existed in the past. One elder fisher-farmer showed a scar above his ankle from an ulcer when he was 18 years old, and explained: Thus, these accounts show how over time, ulcers and lesions have been differentiated by signs, symptoms and observed effectiveness of treatment, drawing on overlapping explanatory models. Exploring perceptions, understandings and experiences of Buruli within this, when shown the photographs from the WHO poster all but one woman indicated that the nodule was jue, a boil. Seemingly, papules were rarely seen, with only one person suggesting it could be Buruli. On the other hand, people identified plaques, non-ulcerative oedema and early ulcers as Buruli. Rarely, early ulcer with indurated edges was associated with cancer. On the whole, most people who had had Buruli had experienced forms of early ulcer. On many occasions this wound developed after the herbalist began treatment. Some were affected once, others multiple times. Similar to epidemiological descriptions, the vast majority of people had experienced lesions on their legs which most commonly started with an itch, described as like a small prick of a thorn, developing within days into a small swelling or skin changes. Others first noticed a small nodule, and a minority experienced pain or other sensations. Noticeably, people clearly recalled their experiences of Buruli. A 20 year old female fishmonger was affected when she was eight: Likewise, a 36 year old fisherman recalled: And a 28 year old female fishmonger recollected: Not only do these narratives overlap with biomedical descriptions of Buruli, in addition, they demonstrate how quickly people sought ‘expert’ advice. Contrary to experiences at health centres, and perceptions on late presentation portrayed in public health literature, people in fact sought what they deemed appropriate healthcare relatively quickly. Advised by parents or other family members on where to seek treatment, people affected by ulcers, jue and Buruli largely sought therapy from a herbalist, and the majority did so within a few days of experiencing symptoms. Despite Buruli being understood to a large extent as a disease with biomedical causes, the experts, were local herbalists. It was the herbalists and the perceived efficacy of their treatment that people trusted. Herbalists that treated Buruli learnt their skills, techniques and practices from elder herbalists. Their apprenticeship took years. Knowledge of herbs was learnt from their teacher, revealed in dreams, or through trial and error. While some herbs were collected from elsewhere, sometimes at the foot of a mountain, they were predominantly found growing wild around the home. One elder herbalist pointed to the common grasses around his house that he used, and laughing said, ‘you see, these people don’t know’. These local herbs are referred to as erua Madi (literally, ‘Madi medicine’), or erua abi dri more generally (‘medicine from ancestors’, or ‘medicine given by ancestors’) and are opposed to erua Mundro (‘European’s medicine’, or biomedicine). When a herbalist was approached for advice he first assessed whether the lesion was Buruli, jue or another condition. One herbalist described examining for pitting oedema–observing an indentation after pressing the swelling with a thumb–a sign of Buruli. Another test involved making a cut at the site of the lesion (for example on the leg) and elsewhere (for example on the arm), demonstrating to the person that the colour of the blood from the area with Buruli was darker. Herbalists’ treatment varied to a certain degree, but their general approach was similar. A 36 year old male fisher described his experience: Herbalists often began by making small superficial cuts to the skin around where the problem was ‘to make the ‘germs’ collect in one place’. Typically, after a number of days when the swelling had accumulated, the herbalist made a deep cut to release pus immediately around the swelling. Mixtures of fresh or dried herbs were then applied topically. In addition, some herbalists made a drink from the herbs. Others specifically did not use herbal drinks for Buruli–only for local poison as herbal drinks precipitate diarrhoea and expel poison from inside the body and bloodstream. This treatment was sometimes extensive, especially considering anaesthetic was not used. As one woman described during a discussion with female fishmongers: Herbalists explained that in the past, such severe forms of Buruli requiring extensive treatment were more common. The deep cuts were completed in one sitting, as one herbalist said: He explained that if it is not completed in one sitting, ‘it will continue to eat the flesh’, and the wound will spread, developing into a late ulcer. He went on to state that they had to be very careful managing the waste from cleaning the wound–‘so that no one can tamper with it’. Reflecting on how common it used to be for a number of people in one household to be affected, he suggested that perhaps this wasn’t done so rigorously in the past. Depending on the severity, the wounds took weeks, months or years to heal. For a few people, Buruli had affected the use of the limb and it was common for people to suffer from pain long after the ulcers had healed, particularly when it rained. One male elder continued to make superficial cuts and apply herbs to his leg each period the rainy season began and his pain returned. Buruli had also affected some people’s day to day lives, limiting women’s ability to carry out daily chores, or children’s time spent in school. There were reports of people having died from late ulcer lesions, but most it seemed recovered and healed with little long-term sequelae except scarring, which people openly showed when the topic of Buruli came up during conversation. Some of these scars were the depressed scars of the ulcer itself, others were from the herbalist’s cuts. Over time, there has been a continuing relationship with biomedicine surrounding treatment practices for Buruli. Along the river, some people who experienced Buruli had solely used erua Madi, with others using a combination of erua Madi and biomedical treatment. This reflects broader plurality in quests for therapy in this region. In part, decisions around treatment were influenced by who people went to for advice–normally a family member—before seeking treatment; and in part by their own experiences, or the circumstances that people found themselves in at the time. Only one 23 year old fisherman reported that he solely sought biomedical treatment–in this case, he was taken by his parents to a nearby health centre. Otherwise, people who had been affected, particularly those affected in the last 15 years, reported that they had initially visited a local herbalist for treatment (cutting) before attending a health centre for antibiotic injections. For instance, in 2013 a 30 year old woman first sought treatment from a local herbalist before concurrently receiving antibiotic injections and finally undergoing surgery. Another man suffered Buruli three times in the 1980s and 1990s. The first time he solely used erua Madi, however when the ulcer recurred he concluded that the local herbs had not sufficiently treated it and so sought biomedical treatment. At the second recurrence in the 1990s, during which time he was displaced due to conflict, he again used erua Madi. It is noteworthy that both erua Madi and biomedicine can be used for Buruli. Contrastingly, for local poisoning only erua Madi can be used: if a person affected by local poisoning consumed erua Mundro their condition deteriorated or they experienced a potentially fatal reaction to the medicine. During an interview about Buruli, a 20 year old female fishmonger described a separate experience of local poisoning that was initially treated at the hospital: Describing this adverse reaction to the biomedicine administered in the hospital, this experience was understood to be a sign that therefore the cause of her initial sickness was not biomedical. Rather, it was a form of poisoning, and this explanation was reinforced by the fact that when the biomedicine was stopped and the herbalist’s treatment started, the reaction subsided. Thus, through these empirical observations herbalists were deemed best placed to deal with particular conditions. Yet seeking erua Madi from local herbalists was not solely because of non-biomedical understandings of disease and illness. While erua Madi was used for Buruli, in contrast to local poisoning this was not because it was an interpersonal affliction. Buruli was still a Madi disease, because of the history of ulcers and treatment pre-dating the introduction of biomedicine. In the case of ‘worms’ like schistosomiasis, people often reported that they used erua Madi as a last resort, because they were far from a health centre, the health centre was regularly out of stock of medicines, or they were not able to access the free distribution of praziquantel. Research on social responses to mass drug administration for schistosomiasis and other neglected tropical diseases in Moyo and Adjumani has demonstrated how demand for the public health programme and biomedicine in part draws on ideas of modernity and questions of citizenship–a demand for the state provision of resources where it has typically been lacking [34]. Even though the public health provision of Buruli ulcer treatment is similarly limited, such claims questioning the lack of biomedical treatment are not being made. In part this could be due to limited public health campaigns in contrast to other diseases. For instance there have been numerous, long-standing malaria interventions, such as the distribution of bednets and provision of anti-malarial treatment and Co-artem for malaria is widely accessed and used as soon as symptoms interpreted as malaria develop. More recently, hepatitis ‘emerged’ as a serious public health concern in 2010. A childhood vaccination programme has been introduced, yet there is demand for biomedical testing, vaccination and treatment beyond this, and a questioning of the limited availability of these resources [34]. Social responses to Buruli have clearly evolved in a different way to these other diseases. During long-term fieldwork in the 1980s, Allen [34] describes a very similar situation, with Buruli understood as a Madi illness from impersonal causes requiring treatment from herbalists. Standard antibiotics at the time would not have been the current WHO-recommended regime for Buruli ulcer, and Allen [34] similarly notes that despite complications and fatalities, some cases of severe disease were cured by herbalists. Allen points out that this provided further empirical support for their expertise. Even earlier in the twentieth century it appears to have been a similar picture. Lunn et al’s study of Buruli ulcer in Madi District in the 1960s found that out of 39 new cases of disease, “On two occasions patients were found to be applying powdered herbs, a procedure which forms a thick dry crust over the ulcer bed” (p. 278) [30]. The authors also reported evidence of ‘burnt-out’ cases: “some parents displayed their children proudly, affirming that their ulcers had healed without Western medicine” (p. 279) [30]. Thus, there has not been an apparent dramatic change in practices over this 50 year period, and the perceived efficacy of herbalists’ treatment has persisted despite the general expansion of biomedicine during this time [29]. To some degree this is not surprising and there are a number of possible explanations. On the one hand, there is a perceived lack of efficacy of biomedical treatment. There has not been a concerted public health strategy to actively identify and treat Buruli and, from what I could ascertain, the broad-spectrum antibiotics widely available at local health centres were not the WHO-recommended regime (drugs which were available through HIV-TB services). On the other hand, there is a perceived efficacy of herbalists’ treatment with successful treatment of many nodules and ulcers providing evidence. This raises the question: what is it about herbalists’ treatment and practices that are effective? Interestingly, it has been reported that one third of early stage Buruli nodules resolve spontaneously and excision is estimated to have an 84% cure rate [3]. As described in this article, people tended to seek herbalists’ advice within a few days of initial symptoms, and herbalists treated nodules at this early stage. Furthermore, in Ghana, antimicrobial properties have been identified in the herbs used and hot poultices applied [35,36]. Therefore, there are conceivable biomedical explanations for the effectiveness of herbalists’ practices. But the effectiveness of herbalists’ treatment and practices goes beyond a consideration of biomedical plausibility, nor has it been without biomedical influence. Herbalists have incorporated biomedical knowledge, and their practices have adapted to new developments, technologies and biomedical threats. One herbalist explained how their practices had changed. Before a period of exile in the 1980s when people fled to southern Sudan, herbalists made their cuts using the head of an iron spear. Since razor blades became available, patients are required to bring their own, and whereas before the blades were reused, now they are for sole use, as one herbalist explained: It was also not uncommon for herbalists to have a consultation record book, similar to hospital record-keeping, with details on the patient, sickness, and treatment given. There have been attempts to more formally professionalise herbalists [34] and herbalist associations have been established in the town. Yet the majority still practiced independently at their homes particularly in rural areas with little formal governance. The relationship between herbalists and biomedical practitioners has not been without tensions. As a 70 year old male herbalist recalled: While biomedicine was seen to offer antibiotics, as this herbalist explained, for Buruli it is the cutting and visible release of pus that is important, otherwise neither treatment will work. Cutting is a key feature of the herbalists’ treatment. This is interesting because some studies have suggested that a fear of surgery leads people to avoid hospital care and seek traditional healers [11,37]. Yet from my discussion with people in Moyo and Adjumani, and seeing the scars of healed ulcers, a herbalist’s treatment was sometimes extensive, and treatment by a herbalist was preferred because of a perceived lack of intervention by medical staff at the health centre. People explained how the condition worsened if somebody attended the health centre as medical staff, following protocol, waited before lancing nodules or they only administered antibiotic injections. In one village, women described how healthcare workers ‘feared’ to lance a boil, preferring to refer patients to a herbalist (although the herbalist referred to denied being aware of this). In addition, antibiotics commonly available at health centres were likely not the most effective, depending on the microbial cause of the lesion. Furthermore, health centres’ drug stock is frequently limited, further undermining biomedicine as a credible source of treatment. On the other hand, erua Madi is empirically perceived as efficacious and the long history of herbalists managing jue and Buruli with erua Madi mean they are trusted as experts. Thus, there are multiple reasons why people rarely presented through the biomedical health system–labelling this as ‘late presentation for treatment’ is clearly misleading. Village health teams were reportedly advised to report ‘wounds that don’t heal’ to health centre staff, and to ‘monitor and inform’ the health authorities of local herbalists treating such cases. But in reality, a healthcare worker explained: Indeed, during a conversation, one woman even asked me: Herbalists raised similar concerns in the past about the need for early diagnosis and treatment, but now, it was said, people were aware that if they sought treatment from a herbalist early they could be cured within a few days without the need for deep cuts. From this perspective, there was little need to question a lack of biomedical input or even seek it, at least initially and certainly not solely. In this respect, rather than ignoring initial symptoms of Buruli and jue, people were responding quickly and seeking out treatment that they deemed appropriate (whether solely from the herbalist or a combination of erua Madi and biomedicine), even if that doesn’t fit biomedical notions of appropriate treatment. Accordingly, there has been an apparent reduction in severe Buruli. As a 70 year old herbalist remarked: Another herbalist also reflected on the declining number of cases and clusters within households. Likewise, a district staff member reported that Buruli was ‘near eradication’, yet these patterns of disease were not documented, with limited, or no epidemiological data. It is not entirely clear what enabled this reported decline given that people are still involved in fishing and farming along the river where the disease is likely to be found. Buruli remains significant though: these historical encounters shape contemporary responses. When I asked people along the river how they would advise others who developed Buruli, invariably the reply was ‘to go to a herbalist’. In this article I have described the situation in rural areas along the river, and responses may well be different in towns where people have access to the hospital and numerous private clinics. Indeed, when a young boy in a district town developed ‘jue’ his mother took him without question to a nearby private clinic for lancing and antibiotics. However, when a young fisherman at one landing site developed a painful swelling on his leg he adamantly refused to attend the health centre, even when I offered a lift: Other people present confirmed: these sorts of afflictions, jue, Buruli, were treated at home not at the health centre. Is Buruli ulcer a neglected disease in this region? Arguably, it depends on whose perspective is taken. Buruli ulcer remains a challenge: hospitals and health centres rely on people self-presenting, yet, for the reasons given people rarely do so. Far from being an ‘emerging public health concern’, for people living and working along the River Nile in Moyo and Adjumani, an area historically endemic for Buruli Ulcer, Buruli was a well-known affliction and similar conditions have been managed long before the introduction of biomedicine. It was neither emerging nor perceived as a particular threat. The accounts presented in this article clearly show how statements of late presentation for biomedical treatment and healthcare-seeking are misleading and oversimplified. This historical biosocial analysis of Buruli in northwestern Uganda has elicited alternative, and deeper insights into contemporary perceptions and practices. The significance of the history of ulcers, herbalists and biomedicine in this region was evident–an aspect often understudied. Piecing together published accounts and oral histories shows how biomedical and historical documents echo people' s accounts; from both perspectives, ulcers have continuously been reinterpreted. Understandings of Buruli are not necessarily contradictory to biomedical models, and do not exclusively explain healthcare-seeking. Understandings of ulcers and treatment practices in this region have developed over a long encounter with skin lesions, shaped by historical and contemporary encounters with biomedicine and long-established therapies. This enquiry illustrates the pragmatic, empiric nature of quests for therapy, and the early presentation to herbalists who are trusted to manage these lesions based on the longevity of the afflictions and healing practices. Establishing this social history goes some way to explain contemporary responses to ulcers, healing and healthcare. This research builds on calls for biosocial approaches to global health priorities including neglected tropical diseases, and anthropological insights into local beliefs and treatment-seeking. Thus far, research that has explored non-biomedical understandings of disease and therapies for Buruli ulcer has largely not considered the broader historical and social context. Taking this into account elicits additional insight into why people seek healthcare in particular ways. Exploring responses to Buruli in northwestern Uganda shows how these lesions are part of the history of this region and elicits insights into understandings of afflictions, quests for therapy and encounters with biomedicine, which bear relevance for understanding contemporary perceptions and practices relating to global and local public health priorities. However, there are limitations. Firstly, this article is based on an analysis largely of accounts of previous quests for therapy for Buruli/Buruli ulcer–it was not possible to follow quests for therapy as they unfolded, nor was it possible to say for certain if the self-reported cases were Buruli ulcer, although the oral accounts reflect biomedical accounts. Secondly, it was beyond the scope of the study to carry out diagnostics, and therefore we cannot document biological presence of disease. Finally, the impact of Buruli in Uganda is arguably not comparable to that presented in research from highly endemic countries such as in West Africa, however, there are broader insights gained from reflecting on the approach presented in this article. That is, what a biosocial approach to understanding healthcare-seeking for Buruli ulcer might look like, and the insights that this type of approach can bring. This analysis thus raises additional questions that cannot as yet be answered: What are the biological explanations for the lesions understood as Buruli in this region? If prevalence has reduced, how, and why, has this come about? To answer these questions will require further inquiry that encompasses biological, social, epidemiological, ecological, environmental and historical insights.
Buruli ulcer, a neglected tropical disease, has been described as an emerging public health problem in parts of sub-Saharan Africa. One of the challenges highlighted by the World Health Organisation (WHO) is improving access to biomedical healthcare. A research priority is thus to determine local understandings of skin disorders such as Buruli ulcer, and social-cultural factors that influence health-seeking. This article explores perspectives on Buruli among fisherfolk in northwestern Uganda along the River Nile, where the ulcer has previously been documented. The findings are based on a long-term ethnographic study of health, healing and illness in this region, and integrate insights from biomedical and social sciences. This biosocial approach demonstrates that, rather than seeking therapy late, people in this region sought treatment from local herbalists promptly when signs of skin lesions appeared. This was not because of non-biomedical understandings of disease. The reasons why people continue to trust local herbalists as experts in Buruli can be found in the historical context of how ulcers have been understood and managed, and the broader context of quests for therapy in this region. While the findings relate to where this study took place, the lessons learnt and biosocial approach used could be usefully applied in other settings where Buruli ulcer is endemic, and for understanding the local context of other neglected diseases and global health priorities.
medicine and health sciences
ecology and environmental sciences
pathology and laboratory medicine
rivers
tropical diseases
geographical locations
uganda
herbs
bacterial diseases
signs and symptoms
aquatic environments
ulcers
bodies of water
neglected tropical diseases
plants
africa
public and occupational health
infectious diseases
buruli ulcer
marine and aquatic sciences
lesions
people and places
freshwater environments
diagnostic medicine
eukaryota
earth sciences
biology and life sciences
organisms
Understanding perceptions on 'Buruli' in northwestern Uganda: A biosocial investigation