As a critique of biomedicalization and triumphalist interpretation of public health history, the social history of public health tends to paint a polarized and dichotomic picture of powerful health experts versus susceptible patients. Conscious of various competing narratives, The International Campaign Against Leprosy, 1948-2005, authored by Jo Robertson, takes a departure from such cliché to build a non-linear and non-dichotomic narrative of the international anti-leprosy campaign, while maintaining a critical distance from triumphalist interpretation. Consulting a wide range of empirical sources, including materials from multiple archives and databases around the world, official records of various international leprosy organizations, memoirs, and oral histories of Hansenites, and interviews with multiple historical actors, this book deftly reconstructs a social history of global efforts against leprosy after World War Two (WWII). It does so by examining the dynamics of various health organizations and philanthropic groups (chapters 1, 3, 5, 7, 9–11), the variation of actors, and the instability of leprosy-related medical knowledge (chapters 2, 4, 6 and 8), without losing sight of Hansenites’ perspectives and human rights (Introduction and chapter 12).
This book is the fruit of over a decade of extensive research, which took its author to multiple leprosaria and sanatoria across the globe. A total of 12 descriptively dense chapters are thematically woven and bookended by an Introduction and Conclusion. As the author convincingly argues, the international effort against leprosy is not a stable, homogenous, harmonious, and uncontested field with one voice and one vision. Contrary to the elitist narrative put forward by leaders of the World Health Organization (WHO), it is ever evolving and full of cacophony, as a mélange of associations and actors competing to propound what they see as the best way to deal with leprosy and the people afflicted with the disease. Equally important, Hansenites too are not homogenous and passive, a point which can be seen in their different responses to drug experiments and segregation.
Throughout the book, three independent yet interrelated themes repeatedly emerge—the changing landscape of treatment, organizational differences, and competing paradigms of leprosy treatment. Over the second half of the twentieth century, the treatment landscape of leprosy, driven by new drugs and changing notions of cure, moved from centralized institutions characterized by paternalism, such as the leprosarium, to deinstitutionalized leprosy control, where responsibility for treatment is decentralized by emphasizing the role of primary healthcare, outpatient treatment, and mobile dispensary, while removing everyday surveillance of patient compliance. This was a reversal of the evolution over the first half of twentieth century, whereby the anti-segregationists lost the battle to segregationists. Pertinently, the invention of dapsone (also known as DDS or sulphone) during the interwar years was crucial in the reversal from centralized institutions to decentralized leprosy control in the post-war years. However, even though Dapsone inhibited M. Leprae multiplication, it was only weakly bactericidal. It effectively reduced the infectiousness of a leprosy case, but it did not immediately kill the bacteria and offered no promise of bacteriological clearance, which posed challenges for defining the end point of treatment (51-52).
A demarcation was thus made to differentiate between “cure” in public health terms, which meant disruption of transmission at the community level, and “cure” for individual sufferers, which implied a lifetime’s dapsone treatment instead of permanent remission. Despite its limited efficacy, dapsone dramatically changed the treatment of leprosy “from a lifetime in a leprosarium” to “a lifetime of treatment” (chapter 2). This shift would not have happened without the various historical actors. The incorporation of leprosy control as a large-scale campaign in the WHO’s program in the mid 1950s owed as much to the emergence of dapsone as to the push by various groups, including philanthropic and missionary groups formed in the late nineteenth and early twentieth centuries and nationalist elites from “Third World” countries (especially the Indian delegations) keen to build a healthy nation (37-38). As noted by the author, post-war optimism founded on technologies and biomedicine also played a role in the WHO’s incorporation of the mass campaign against leprosy, which was at once viewed as a “large-scale experiment” (58-62). The WHO did, however, later become disenchanted with the mass campaign as the “magic bullet” of the biomedical model was challenged by relapsing cases and clinically confirmed DDS-resistant strains of M. Leprae in the 1960s.
Parallel to the rise of dapsone therapy came the growing tension between treatment-focused and rehabilitation-focused approaches to the disease, the contestation between holistic care and chemotherapy, and the diversification of people and organizations involved in the campaign against leprosy, who could be variously identified as people and associations with a missionary background (e.g. the Mission to Lepers, Leprosy Mission International, and the American Leprosy Mission), those with a scientific mandate and a secularized and professionalized background (such as the British Leprosy Relief Association, Netherlands Leprosy Relief, and the International Leprosy Association), and those who bridged people and groups from the two backgrounds. “These societies,” notes Robertson, despite being “united in the desire to ameliorate the condition of leprosy sufferers, had differing views on what that entailed, and on where emphasis should be placed” (69). Long before the invention of effective drugs and the emergence of the biomedical model, missionary and philanthropic groups were already active in dealing with the social, emotional, and mental needs of Hansenites. Now, with medical advances, proponents of the rehabilitation approach argued that more social responsibility should be integrated into leprosy control programs (55). When in 1966 these societies came together to form the European Federation of Anti-Leprosy Organizations (ELEP, renamed the International Federation of Leprosy Associations, or ILEP, in 1975, when Asian organizations such as the Sasakawa Memorial Health Foundation joined), the contestation between the treatment-focused and rehabilitation-focused approaches persisted: members of the Medical Commission under ELEP and proponents of the rehabilitation approach in the federation even competed against each other for internal financial resources (75).
As more and more dapsone-resistant leprosy cases were found in the 1970s, scientists continued to experiment with new drugs. Two programs—Research on the Immunology of Leprosy (IMMLEP), and the Scientific Working Group on Chemotherapy of Leprosy (THELEP)—both funded by the World Bank and UNDP from 1979, oversaw the invention of effective drug combinations and the conducting of trials, which eventually led to the application of Multidrug Therapy (MDT) in 1981. Like its predecessor dapsone, MDT did not stabilize the notions of treatment and cure; it instead complicated both. Driven by the desire to reduce the disease in real terms, and being optimistic about MDT’s efficacy, experts at the WHO’s Leprosy Unit mooted the idea of an “elimination program” in the late 1980s, only later to be challenged. The notion of “elimination” was numerically and arbitrarily defined as lowering the prevalence rate to one case in 10,000 by the year 2000, rather than as the absence of disease in the community or complete cessation of transmission. Meanwhile, in 1987, the WHO redefined a “case of leprosy” as “a person showing clinical signs of leprosy, with or without bacteriological confirmation of the diagnosis, and requiring chemotherapy” (151). This redefinition resulted in the setting up of two registers: “one for those who had completed their treatment but required (or were under) surveillance, and one for those with deformities or disabilities ‘due to past leprosy’” (151). Calculations of prevalence were based on the first category of patients, excluding people with residual disabilities who required ongoing care. The elimination strategy soon attracted criticism from ILEP representatives, who were concerned about the negative impact of elimination rhetoric on fundraising activities and the continuing needs of patients with disabilities. The contestations between the treatment-focused and rehabilitation-focused approaches, and between holistic care and chemotherapy, continued to play out during the roll out of WHO elimination programs.
To balance a narrative that might otherwise be overly expert-centric and bureaucracy-focused, Robertson cites the memoir of Stanley Stein (a Hansenite in Carville, Louisiana) to provide the perspective of leprosy sufferers, who, despite the uncertainty over drug efficacy and the instability of medical knowledge, “were desperate for a ‘cure’” and “prepared to tolerate extreme measures, nauseating treatments, and painful procedures in the hope of a reprieve from leprosy” (23). Yet, even when effective drugs were found and treatments moved toward decentralization, most Hansenites refused to leave their leprosaria, even though their symptoms were abating (56). Their reluctance to return to their own family and village must be contextualized. As indicated in many places, the extreme social disruptions and disadvantages in every aspect of life produced by confinement in leprosaria make people afflicted with the disease feel it is difficult to return to “normal” society even when they are cured and have no permanent disfigurement (211). Instead, they prefer to stay in their leprosaria, which they have unmade and remade into their home (see Loh Kah Seng 2009). The book ends thoughtfully with a chapter on the social and legal movements, which aim to reclaim the dignity and human rights of Hansenites.
With its dense description of half a century of global anti-leprosy efforts, this book critically investigates the triumphalist narratives of the WHO’s anti-leprosy work yet without the oversimplistic opposition to biomedicine which is commonly found in critical literature on the history of biomedicine and international health. “To be afflicted with leprosy could cause disability and make it difficult for people to earn a living … [which] inevitably brought about a loss of both social and economic status,” notes Robertson (224). She concludes that “it is too simplistic to oppose the biomedical model to the socially and economically contextualizing models … they are interconnected” (225). This book offers a wide range of insights to professionals in the fields of medicine, public health, medical sociology, and historiography of public health. It is also a good choice for the general reader who wishes to learn about the dynamics of the global health sector through the case study of the international campaign against leprosy.
References
