The Ecuadorian doctor and researcher, Jaime Breilh, cites Bourdieu, to bring home the idea that epidemiology, like “any other symbolic operation, is a transformed, subordinate and sometimes unrecognizable expression of the power relations of a society” (Bourdieu, apud Breilh 2008, p. 745). In his work, Breilh underlines the inevitable connections between knowledge and politics, making a plea for a ‘critical social epidemiology’, based on perspectives from the global South that might mitigate the narrow, biomedical perspectives of the hegemonic models of traditional Western science. In the following paragraphs, we propose to contribute to this line of analysis by demonstrating the close relation between authority and evidence in a recent controversy over the treatment of leprosy (1) in Brazil.

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It is important to remember that in Brazil where we live and do research, there are over 25,000 new cases of leprosy diagnosed every year. According to the World Health Organization, ours is the only country in the world that has not “eliminated the disease” (that is, reduced its prevalence to under one case per 10.000 people). And, in absolute numbers of leprosy patients, Brazil is surpassed only by India. It is thus understandable that, although scarcely commented on elsewhere, a controversy concerning the treatment of multibacillary leprosy has gained considerable attention among the country’s health workers over the past few years (2).

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In our research, we trace the events that led up to this controversy, from the initial proposal launched by a WHO advisory committee in 2002, through to its endorsement by the Brazilian Ministry of Health in 2018, and subsequent reactions by local health workers (Fonseca 2015, in press). Inspired in the literature on critical global health, we pay special attention to the way perspectives are shaped, justified, and rejected through the mediation of quantitative metrics – such as randomized controlled trials (RCT) – that ‘simultaneously displace other kinds of evidence, even while leaving unanswered questions about efficacy’ (Adams, 2016, p.189). We conclude by suggesting how decisions concerning the ‘best treatment’ -- initially dictated by medical authorities in the upper echelons of hegemonic global health -- are thoroughly transformed by the ‘local’ proponents of social medicine and patient participation.

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Up until the 1980s, treatment for leprosy could last throughout a patient’s lifetime. 1981, with the development of an effective multi-drug therapy, the length of recommended treatment was reduced to 24 months or until the patient’s bacillary count dropped to 0. In 1994, reference to bacillary count was dropped from the WHO protocol, duration of treatment standardized at 24 months. In 1998, the length of treatment was further reduced to 12 months. Since then, patients with advanced (that is multibacillary) cases are to follow a year-long regimen of multi-drug therapy, including a strong monthly dose (to be taken under direct supervision of a specialized health professional), followed by smaller daily doses. Having completed the twelve months, a patient is automatically classified as ‘cured’.

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In 2002, WHO established a Technical Advisory Group in order to examine the possibility of further reducing the treatment from twelve to six months. At the time, committee members felt there was not enough evidence to warrant a change, and so proponents of the shortened regimen proposed to organize a series of RCTs (randomized clinical trials) to test the validity of their proposal. To produce the scientific evidence that could help committee members reach a consensus, RCTs were carried out in India, China, and Brazil with increasingly refined methodologies. Having followed the canons of Western epidemiology, yielding publications in prestigious international journals, the authors of the trials were able to persuade many policy-makers that there were clear advantages to the shortened regimen of treatment. Accordingly, in its Global Leprosy Strategy published in 2016, WHO stipulated as one of its major goals: the promotion and ‘global roll-out’ of the new, shortened regimen of treatment. In early 2018, the Brazilian Ministry of Health followed suit, decreeing nation-wide implementation of the new treatment protocol.

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The proposed change in national policy set off an immediate protest by Brazilian health workers from all over the country, spearheaded by the Brazilian Society of Hansenology. Bolstered by a long tradition of collective medicine, they went to the newspapers, mobilized different professional associations, wrote manifests, and organized their social networks to fight against the proposed change. On the whatsapp group of health workers and researchers we participated in, comments revealed a clear polarization between, on the one hand, clinicians engaged in daily, front-line contact with patients and, on the other, epidemiologists and policy-makers:

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• ‘Either you know the disease and you are against the shortened protocol or you are floating in the quicksand that permeates our national administration – political appointments, protocols, bureaucracy..’.

• ‘With [only] six doses, the patients are going to be transmitting the disease at home and elsewhere, and they’ll have Hansen’s again in ten years when these guys [in Brasilia] who are deciding all this now will not be around to retract their opinions and see the mess they have left us with.’

• ‘I am no authority, I am merely a clinical professional who treats and cares for patients with Hansen’s...but in our service alone, we have over 70 relapsed cases!’
   

Objections to the shortened protocol underlined the fact that leprosy is essentially a disease of the poor. In Brazil, most victims live in rural areas with precarious health services, far removed from specialized treatment centers. It takes two years to receive a first diagnosis, and relapses may be even harder to discover. Although proponents of the shortened protocol insist that nothing impedes extending the treatment in exceptionally resistant cases, health workers who know the terrain ask: Without an efficient, decentralized health system, who’s to guarantee the relapsed patient will ever get a follow-up exam? And were national stocks of medicine based on the six-month treatment3, who could guarantee there would be enough medication to cover the (possibly many) relapses?

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Yet, in the decision-making groups – both in WHO and the Brazilian Ministry of Health -, the idea of scientific evidence appeared to speak louder than any other argument. While proponents of the new protocol claimed that the ‘minority’ positioned against their proposal had ‘failed to present any evidence (scientific publications) to support their opposition’ (Penna et al., 2018), opponents insisted that the WHO committees and RCT scientists had completely ignored the many localized studies showing high relapse rates with six- and twelve-month treatments (SBH 2018). The question of exactly what constitutes evidence became political as each side of the debate tried to enlist powerful allies.

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We now arrive at a rather surprising about-face that occurred in the WHO policy, signaling a retreat from its reliance on the ‘gold standard’ of medical evidence -- the RCTs. Let’s remember that, in 2016, it appeared that nearly fifteen years of evidence-based medicine had triumphantly culminated in WHO’s endorsement of the shorter, uniform treatment as a major goal to be promoted throughout the globe. Yet, almost two years later, in 2018, when its Guidelines for the diagnosis, treatment and prevention of leprosy was published, WHO retracted its endorsement of the shorter protocol, stating there was ‘insufficient evidence to recommend a decrease in the duration of the current 3-drug regimen […] from 12 to 6 months. In addition, the only available RCT found a potential association between shorter duration of treatment for MB leprosy and increased risk of relapse’ (WHO Guidelines, 2018: 19; our emphasis).

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The question is what turned WHO’s policy around? Certainly, there had been opposition from the start to a shortening of the treatment regime. Doctors and NGOs with long experience in the field were still leery about the previous cut in 1998, when the treatment shrank from 24 to 12 months. When in 2002 the epidemiologists still proposed to reduce the duration of treatment even more, health workers from India and Brazil banded together to voice strenuous objections. And yet, the RCTs appeared to speak more loudly, chugging ahead with their ‘evidence-based truths’ right up to WHO’s 2016 endorsement in 2016 of the new regimen’s global implementation. What happened? How could the verdict of ‘hard science’ be so abruptly undone?

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We would like to suggest that health activism was largely responsible for the change. Alice Cruz (2016), UN Special Rapporteur for issues concerning leprosy has given voice to what seems to be a growing trend toward patient participation in policy debates by highlighting the ‘embodied experience’ of patients and their families as the ‘most efficient path to the prevention and administration of potential damage caused by the disease’. It is no coincidence that an examination of the past ten years of WHO documents shows an escalation of this ‘embodied experience’. In the 2006 Global Strategy, there is no mention of the document’s authorship, nor even of contributors. The text stands as entirely impersonal, institutional production. In 2016, things are different. We find one full page on contributors, with named participants listed under rubrics such as: national programs, specialists and WHO. In the 2018 Guidelines, the contributors have burgeoned to three pages of references to specific individuals and associations, including ample mention of ‘persons affected by leprosy’ from different parts of Asia, Africa, and South America.

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We suggest that the proliferation of patient participation in WHO’s global strategies transformed the ‘power relations’ underlined in Breilh’s critical epidemiology, thereby guaranteeing the maintenance of the twelve-month treatment regimen. We would hold that this ‘victory’ does not spell out the whole-sale legitimation of medical intervention (indeed many activists object to what they consider an excessive emphasis on a ‘cure’ via multi-drug therapy to the detriment of long-term efforts needed to promote rehabilitation, physical therapy and various forms of care and self-care for the chronically ill. Rather, it signals an optimistic moment concerning the inclusion of multiple voices that might help close the gap between the producers of knowledge and those most affected by it in a joint effort to prevent and administer what many have now recognized as a persistent chronic disease -- leprosy.