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.

We aim to try to reduce the number of deaths from diet-related CCA.To fully comprehend, respect and work with the various human drives that persist behind continued cases of opistorichiasis and CCA in the region, as we seek to do from a range of disciplinary perspectives, offers the best hope of engaging those at risk from the disease in having an informed, agential and balanced choice over their lifestyle, dietary habits and expressions of their cultural identity.
1. People in LMICs at risk of CCA.
People exposed to high rates of opistorchiasis in the regions in this project are 100 times more likely to develop CCA than people in Europe. 20,000 people are diagnosed with CCA in Isan each year. Asymptomatic until a late stage of the disease, CCA is difficult to detect early enough for surgery and other forms of treatment to be effective. Only a small number of cases are treatable and the majority are terminal within a number of months and involving great physical suffering. Families are often left in economic hardship as a result the death of breadwinners. For those working in the medical sciences, CCA presents a source of frustration given their conviction that the high incidence of CCA could be dramatically decreased by the eradication of opistorchiasis as a result of dietary change. Since the medical aspiration to render Thailand an entirely fluke free environment is almost impossible to achieve, medical science advises that people in regions prone to liver fluke (OV) should desist from eating raw and undercooked cyprinid fish. Although, on the face of it, dietary change offers a simple medical solution, in cultural terms it is a much more difficult issue to address, and for a range of different reasons. Public health campaigns in Thailand have engaged with the question of opistorchiasis since the late 1950s but have proven relatively ineffective. This is not simply because the widely available supplies of cyprinid fish provide a source of affordable protein in a relatively impoverished and infertile region of the world; it is further the case that in Isan, and other parts of mainland Southeast Asia, eating 'raw' is a deeply culturally embedded practice, connecting with questions of cultural identity, with definitions of community and, sometimes, with demonstrations of masculinity.

2. Local NGOs and public health volunteers
The project will draw the processes and outcomes of this multidisciplinary approach to research into dialogue with health workers, local health volunteers, schoolteachers, monks, community leaders and other community organizations in the region affected by CCA. By engaging horizontally with all parties concerned, the project will devise ways in which the arts and the humanities (including music, film, painting and literature) can offer inspiration in the effective dissemination of public health information in a way that is fully respectful of local community identities and the context of their wider health and economic concerns. This has the potential to reduce the extent of opistorchiasis and subsequent CCA in the region and to free up the energies of public health workers to focus on other health issues of concern such as dengue, HIV and other forms of behaviour-related cancers, while opening up new approaches to public health campaigning.

3. Palliative care workers in the region and beyond.
Interdisciplinary arts and humanities research into CCA provides opportunities to explore new approaches to palliative care, including engagement with Buddhist monks in Thailand specialising on the spiritual dimensions of dying and death, such as Phra Paisal Visalo. This has the capacity to produce new model approaches that are transferrable to palliative care in the UK.

The broadest impact of this research project on CCA in Southeast Asia as a case study lies in its relevance to the understanding of the cultural foundations of disease; and the ways in which we may collectively redress poor health.