«Tactics of Diabetes Control Turkish immigrant experiences with chronic illness in Berlin, Germany. Cornelia Guell PhD by Research The University of ...»
Starting with diabetes, I will, first, address how diabetes seems to be perceived as a very mundane, perhaps uncontested, illness. I will argue that, on the contrary, diabetes addresses several ambiguities, being widespread yet public awareness is low, perceived as a sign of affluence but inflicting the poor (Unwin and Zimmet 2009), a chronic and largely invisible illness yet severely life-threatening and requiring daily management (WHO 1999). Second, diabetes is even within the medical realm a contested category. It has been known for millennia in medical history (Schadewaldt 1989) but causation varies and there are several forms (WHO 1999), some population groups are more vulnerable to diabetes than others (Unwin and Zimmet 2009), and there is still no cure. In fact an important part of diabetes care is – the rather nonclinical – lifestyle management (IDF 2005). Thus, third, diabetes is a fascinating research object for anthropologists as its therapy is performed by the patient. Everyday practice of diabetes care is not merely an anthropological focus but a clinical requirement (IDF 2005). This is emblematic for a general shift in (global) medicine from shift from cure to secondary and tertiary prevention in times when chronic illness increasingly replaces infectious disease as the main health burden (WHO 2005).
Diabetes as the mundane Diabetes is a common disease: many of us know friends or relatives affected by it, and it is frequently mentioned in the news on the obesity epidemic that is “sweeping” our countries and threatening the population with its nasty “side-effects” of coronary heart disease and diabetes. Having said this, it might be too ordinary to attract much interest or attention. Many people do not actually know much about diabetes, underestimate its severity (it can lead to stroke, kidney failure, blindness, limb amputation and early death; WHO 1999), and hold the view that it is affecting mainly affluent populations (Unwin and Zimmet 2009) (unsurprisingly, if above mentioned media reports shape public opinion). My own interest in diabetes as an anthropologist lies not only in the fact that it is oddly outside public view but, more astonishingly, that diabetes has largely escaped the anthropological gaze for so long.
Compared to highly ethically charged fields such as HIV/AIDS or human genetics of various kinds, diabetes appears awfully mundane. While ethnographic research questions increasingly tend to include an exploration of the everyday, it seems that finding the exotic is still high on anthropologists’ agenda. Then again, there is plenty of “out of the ordinary” in the story of diabetes and it is the ambiguities that surround diabetes that make it a promising object of anthropological investigation.
The following story shows how diabetes is considered a world epidemic in the public health realm, yet it is a real challenge to raise public awareness of this issue. Few people know that World Diabetes Day is celebrated on 14 November, the birthday of Frederick Banting, who discovered insulin together with his colleague Charles Best in 1921. 2007 was the first time that the day was observed by the United Nations after a UN resolution on diabetes had been passed in December 2006 (Unite for Diabetes 2007). Type 2 diabetes is becoming increasingly common in the world. Recent estimates by the International Diabetes Federation (IDF) suggest that 246 million people, that is 5.9 per cent of the adult world population (age 20-79 years), have diabetes (International Diabetes Federation 2007). Taking demographic trends, age and population size but also urbanisation into account, IDF (2007) estimates that by 2025, the number of people living with diabetes will have risen to 380 million.3 Quite remarkably, diabetes is one of only a few health related issues that has made it on the agenda of the United Nations’ General Assembly and received enough international backing to be adopted by a resolution. These 3 Both WHO and IDF use more or less the same methodology and criteria to make such projections on the basis of age specific prevalence and of UN population figures and projections. Interestingly these projections do not include trends in risk factors such as obesity.
resolutions are usually predominantly politically concerned, and the first ever “health-only” resolution was passed in 2000 on AIDS; 2004 followed a resolution on road safety (UN 2007). UN Great Assembly resolutions are only recommendations and not binding, but they are internationally recognised and mark a global concern.
The aim of putting diabetes on the UN agenda was to raise awareness in all member states of the global pandemic of diabetes that increasingly affects low and middle income countries, urge member states to respond in their capacity building of adequate healthcare provision, and finally to designate World Diabetes Day as a United Nations Day (Unite for Diabetes 2007). Interestingly, the campaigners of this resolution – chiefly the International Diabetes Federation, the umbrella organisation of national diabetes unions – had embraced themselves for a long, stony way. To the astonishment of many people working in this field, the resolution was passed within the year of officially launching the campaign. Key of the sudden success might have been the involvement of Bangladesh and its diplomatic effort of having the resolution backed by the G77 (Unite for Diabetes 2006). This majority voting bloc in the UN General Assembly is the coalition of 133 developing and transitional countries led by the Republic of South Africa. Their attachment to the resolution ultimately convinced the governments of high income countries to support this resolution which, for the first time, recognised that chronic, non-infectious disease poses a threat to world health.
Unfortunately, the media has not embraced Diabetes Day in quite the same way as their coverage of HIV/AIDS related global campaigns. To mark the first UN observed World Diabetes Day, the IDF invited nations across the globe to light landmark monuments in the campaign’s (and UN) colour blue. On 14 November 2007, New York’s Empire State Building, Sydney’s Opera House, Rio De Janeiro’s Christ the Redeemer of Corcovado, Istanbul’s Bosporus Bridge, Paris’ Eiffel Tower and the London Eye were among the almost 250 monuments lit in over 195 countries (World Diabetes Day 2007). These celebrations had one major flaw: it seems that nobody was watching. It had failed to make it as a news item that day; even local media – arguably not busy with too much regional news that day – failed to comment on our own blue lit monument, the Gateshead Millennium Bridge.4 There are further example of lacking awareness and attention. The UN noted that diabetes afflicts the poor and marginal most severely, but it is often perceived as an illness of affluence. The involvement of the poor G77 in the UN resolution might thus seem surprising to many, but it is estimated that between 70 and 80 per cent of all people affected from diabetes are living in low and middle income countries (Wild et al. 2004).5 It is these countries that have to grapple most with the immense economic costs of diabetes care on top of the burden of infectious disease. In 2006, the annual World Diabetes Congress, hosted by the IDF, was set in Cape Town, South Africa, to mark that year’s motto of “Care for Everybody” which aimed to raise awareness for marginalised people with diabetes. Despite its relatively remote location, the conference was attended by more than 12,000 experts in medicine, pharmacology and public health, and – as diabetes experts told me proudly – rivalled the size of the 2006 International AIDS Conference, held several months earlier in Toronto with over 20,000 delegates. The congress’ agenda included a stream on diabetes in Africa that discussed the relevance of poverty, traditional medicine and public health provisions, and links between diabetes and TB and AIDS. Other streams included biochemical studies on Asian and African herbal hypoglycaemic remedies, as well as epidemiological and health education presentations on marginalised population groups such as migrants or homeless people. Ironically, these presentations in the spirit of the congress’ motto were mere footnotes in an overpowering programme of biomedical and biochemical research talks and the adjacent drug industry exhibition, that failed to properly acknowledge that it is in fact marginal people – those in low and middle income countries and marginal population groups in high income countries – that are most affected by diabetes. While it seems While this initial hesitant reaction to the resolution could be easily observed, it remains to assess in the coming years if low and middle-income countries make more of their healthcare resources available for chronic illness prevention and care. I left Germany before the passing of the resolution and could not observe any reaction within the field. The Disease Management Programme for diabetes that allocates specific resources of the national health insurances to diabetes care had usually been mentioned to me as Germany’s policy answer to the increasing burden of diabetes. For more details see Chapter 7.2, pp.197.
5 Figures of diabetes in the developing world are often estimated as they try to include something up to 80 per cent undiagnosed diabetes in some countries (Unwin and Zimmet 2009).
more obvious why the drug industry shows little interest in consumer groups with little spending power, biomedicine’s indifference raises more worrying ethical concerns.
Moreover, people underestimate the severity of diabetes. This might be as it is a chronic and largely invisible illness, or because it is so common that we all know relatives or friends that quietly live with their illness. However, diabetes causes severe secondary illness and leads to early death. The WHO (1999) lists such longterm complications as “the specific complications of retinopathy with potential blindness, nephropathy that may lead to renal failure, and/or neuropathy with risk of foot ulcers, amputation, Charcot joints, and features of autonomic dysfunction, including sexual dysfunction. People with diabetes are at increased risk of cardiovascular, peripheral vascular and cerebrovascular disease.” In sum, diabetes can lead to blindness, amputation, stroke, kidney failure and impotence. While these further health damages can be avoided or at least postponed with good diabetes management, those without good diabetes care can suffer severe complications. In the case of diabetes in low-income countries this means that, as diabetes develops at relatively older age, it is often the breadwinner of a family that is inflicted, and losing eye sight or limbs puts the whole family in jeopardy. A similar fate can afflict marginalised people in wealthy societies whose healthcare systems do not provide adequately for their particular needs.
Diabetes notably affects the lives of people in low-income countries most painfully but some population groups are generally more afflicted than others (Unwin and Zimmet 2009). Urban populations are at much higher risk of diabetes than rural population groups. Epidemiological research also shows that those people living in the lowest socio-economic groups in high-income countries show the highest diabetes prevalence (Connolly et al.2000; Whitford et al. 2003), while studies in some developing countries have pointed out the opposite effect with those rising the socio-economic ladder being increasingly exposed to the risk of developing diabetes (Herman et al. 1995; Abu Sayeed et al. 1997; Xu et al. 2006).6 Moreover, there are quite distinct differences between some ethnic groups. The North American 6 However, as pointed out in the previous paragraph, even if prevalence is higher in high income groups of such developing countries, it is the poorer that suffer greater consequences.
Pima Indians, for example, are famously mentioned in many textbooks for their unusually high prevalence of type 2 diabetes, and different Pacific Islander populations, Melanesian, Micronesian and Polynesian, apparently vary remarkably in their diabetes rates (Qiao et al. 2004). There is also a growing literature on ethnic minority groups and migrants such as South Asians and African Caribbean origin people in the UK, or African and Hispanic Americans in the USA (Unwin and Zimmet 2009). In public health and epidemiology, especially, the plethora of hypotheses on causal relationships of migration, socio-economic status and health is often not matched by actual research projects. There is only one study in Germany that suggests a similar pattern among Turkish migrants in Germany (Laube et al.
2001). Beside reports of experience from health professionals in this field (who largely agree), there is no further data that could confirm or deny the unusual high rates in this population group.
Such research begs the question of a possible genetic susceptibility of certain ethnic groups. So-called “thrifty gene” theories explore the possibility of an ethnic proneness to metabolic chronic illnesses, as some genetic make-ups are suspected to be less adapted to Western affluent nutrition and lifestyles (McDermott 1998). The idea is that some population groups might have still retained a kind of “hunter-andgatherer” gene pool which is highly tailored to store energy in the body and which can be fatally exposed to affluent diets after migration or after rapid transformation of indigenous economies. While there is indeed a strong genetic component in the causation of type 2 diabetes and insulin resistance, research continues to try to unravel the multiple gene defects that seem to be involved (Almind et al. 2001;
Permutt et al. 2005). In relation to vulnerable population groups, however, much research suggests a combination of biological and environmental risk factors that could explain high prevalence (Unwin and Zimmet 2009).
Contested medical territories Diabetes is not a straight-forward medical category and, as mundane it might appear, it is still considered a “mysterious illness” (Schadewaldt 1989: 43). This quote by the Greek physician Aretaeus of Cappadocia (ca. 81-138 AD) is still undisputed and despite medicine’s long interest in diabetes, its causation and classification still raises much controversy. For example, diabetes’ varied prevalence in different population groups raise the challenge to unravel the complexities of genetic and environmental factors in diabetes risk.