The Cultural Contexts of Disease Prevention: The Case of Cholangiocarcinoma in Mainland Southeast Asia

The Northeast region of Thailand - known locally as Isan - is home to the highest rates of bile duct cancer (cholangiocarcinoma, hereafter CCA) in the world. While CCA is normally rare, Isan reports a record number of over 20,000 cases a year. Furthermore, CCA is also prevalent in most rural communities along the Mekong River in Southeast Asia, in Cambodia, Laos and Vietnam. CCA in this region of the world results from a neglected tropical disease, chronic liver fluke infection, caused by the consumption of raw or undercooked freshwater fish infected with Opisthorchis viverrini (hereafter OV). OV was identified by the WHO in 2012 as a Class I carcinogen. Infection carries no symptoms and, with each fluke able to live in the bile duct for up to twenty years, the slow development of CCA remains asymptomatic until the later stages of the disease. As a result, less than 5% of cases are operable and five-year survival rates among those treated are also low. In the remaining cases, the only option is palliative care. CCA is a silent killer in Isan and its neighbouring countries, responsible for the devastation of impoverished rural families whose key earners can be struck down by the disease in later life; but it also frustrates medical specialists because the eradication of OV infection would prevent most cases of CCA altogether, hence saving thousands from dying a painful death. The complexity of the problem is not, however, solely a medical one but rather one that requires a sustained and respectful engagement between medicine, the social sciences and the humanities in order to address in the most nuanced and rigorous ways, the range of issues relating to persistent OV infection in the region: most notably the fact that infection occurs as a result of dietary practices associated with deeply ingrained notions of cultural identity relating to the practice of eating "raw" that has defined the region for many centuries. In Thailand public health campaigns in operation since the 1950s have had limited success in effecting behaviour change and, crucially, in combatting the prevalence of OV infection and CCA. This may in part be due to the top-down, Bangkok-centric, nature of public health intervention in Thailand, one which is persistently coloured by hierarchical beliefs in the fundamentally "uncivilised" nature of cultural and dietary practices in Isan. Nineteenth century history tells of the internally colonising impact of the newly forming Siamese nation-state, the politico-cultural effects of which persist up to the present day. These historical remnants continue to drive all aspects of interaction between the centre and the periphery, the capital and the countryside in contemporary Thailand. To more fully comprehend, and hence be in a position to respond thoughtfully and effectively to, the culturally embedded behaviour and practices at play in persistent OV infection and subsequent CCA, this project proposes a radical multidisciplinary collaboration, the aim of which is to attend holistically to this neglected disease and its causes. By addressing the very specific medical problem of CCA in Isan from a wide variety of differing yet interrelated perspectives (those of public health and hygiene, epidemiology, parasitology, biochemistry, religious and spiritual belief patterns, history, geography, anthropology ecology, psychology, phenomenology, socio-linguistics, postcolonial theory, literature, the arts and and cultural studies) we seek out the connections that pertain across disciplines in the need to tackle diseases that evidently relate to cultural and community-based practices. Our ultimate aim is to draw upon this multidisciplinary approach to effect a wider impact on the current state of knowledge regarding behaviour-related diseases in a range of other LMICs, as well as in the UK.