ICA

Institute of Cultural Anthropology

Medical Anthropology

Connecting Health and Culture

Online extra: 

St. Martin CSA film on mental health

Learn more about the anthropological perspectives on

Covid-19

Online extra: 

Claudia Fonseca and Glaucia Maricato on leprosy

The ICA (Institute for Cultural Anthropology) is the semi-scientific journal of Itiwana, study association Cultural Anthropology and Development Sociology at Leiden University. The ICA appears twice a year.


Text editors Roos Capel, Rémi ten Hoorn, Irene Midttun, Veronie Rouschop and Ole Witte


Media editors Rémi ten Hoorn, Irene Midttun, Loes Moree, Veronie Rouschop and Ole Witte


Editor in Chief Loes Moree


External authors Manon Delhaas, Sanne Hogesteeger, Dara Ivanova, Annemarie Samuels, Hannah Stalenhoef, Eston Wahome


Coverphoto Cottonbro - Pexels

Printing Company Orange Books


Editorial address Study Association Itiwana
Attn. ICA-editorial Wassenaarseweg 52 (Room SB-07) 2333 AK Leiden
E-Mail info@itiwana.org


The editors reserve the right to shorten and edit articles or not to post them. Acquisition of (parts of) articles is only permitted after consultation with the editors

Table of contents

PREFACE

THE COLOURFUL WAITING ROOM


KOUNTERFEIT KOSMETICS

THE RISE OF THE COUNTERFEIT COSMETICS INDUSTRY AND ITS HEALTH CONSEQUENCES


ELEPHANT CARE

MULTITUDES OF CARE


AIDS AND ISLAM IN INDONESIA

TOWARDS A POSITIVE TURN?


BACK IN LIFE

AND IN BUSINESS


OPENING UP CARE, WITH CARE

BULGARIAN MIGRANT CAREGIVERS IN ITALY


COVID-19: THREE PERSPECTIVES

ANTHROPOLOGISTS IN THE MEDICAL FIELD

ONLINE EXTRA: BODIES,  COLLECTIVES AND FORMS OF KNOWLEDGE:

LEPROSY THROUGH THE LENS OF CRITICAL EPIDOMIOLOGY


STIGMA

THE SILENT KILLER


BIBLIOGRAPHY

CREDITS TO ALL THE AUTHORS

 

The colourful waiting room

Preface

The doors opened and I entered the building. It was impersonal and intimidating. Everything was white: the walls, the costumes and the furniture. We went to the first aid department. I sat down and nervously waited. The room was crowded. Two children of a noisy family were waiting while playing a game I could not understand. Next to this family, a man sat on his own. He wore an outfit from the seventies and rhythmically tapped his finger on the chair. After three hours of waiting, my collarbone turned out to be broken. This was not very pleasant, but at least I learnt something. In this waiting room, I came to realise that interesting people and cultures existed within the white walls of the hospital.


There is a big contrast between medics and anthropology. The medical field is often associated with cold buildings, structure, and order, whereas anthropology is linked to beautiful and colourful cultures in all different shapes and sizes. In this ICA we hope to demonstrate the interrelation between medics and anthropology. We explain this, amongst other articles, by writing about the Covid-19 crisis. During this pandemic the social structure of everyone’s lives has changed to a certain degree. Anthropologists play an essential role in understanding these social changes.


Not only the Covid-19 crisis will be discussed in this issue. We will also talk about the relation between beauty, religion and (mental) health. Moreover, you can read about how anthropologists experience working in the medical field. Lastly, a problem will be addressed that deserves more attention and needs to be solved: the stigmatization of illnesses.


Let’s explore a world of (hopefully) refreshing and fascinating medical insights

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Loes Moree

A third-year student of Cultural Anthropology, the Secretary of the Board of Itiwana and the Editor in Chief of the ICA editorial.

 

Kounterfeit kosmetics

The rise of the counterfeit cosmetics industry and its health consequences

In recent years, influencers have, we could say, taken over the internet. Filling our Instagram feeds with flawless selfies, the latest trends and promotional codes for products they most likely do not use themselves, internet sensations such as Kim Kardashian and Kylie Jenner have marked their territory in the digital environment. Besides advertising sponsored products, a selection of these social media stars have also released their own products. From eyeshadow palettes to contour kits and from make-up brushes to beauty vitamins – everyone wants to get their hands on one of these hyped products. This, however, has also sparked a rise in counterfeit makeup products, which are essentially fake versions of the original, often sold at a much lower price. Even though this might sounds like an attractive alternative to some, the health consequences that come with the use of such products are not appealing in the slightest…

We could say the process of counterfeit makeup production starts at the influencer, because they, as the word implies – influence other, predominantly younger people. Generally speaking, when an influencer is launching a certain product, this product is often advertised through their social media profiles months before its release. Followers, including other influencers, bloggers, but also younger people who look up to their favourite celebrities, are often showered in advertisements about how ‘revolutionary’ this product will be. Consequently, many followers will try to get hold of one of the items.

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Kylie jenner

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A good example are Kylie Jenner’s famous lip kits. Kylie Jenner’s lips were a hot topic for years, which indirectly started the trend of overdrawing your lips to make them look bigger, or even further – getting them injected with dermal filler. In 2015, she launched her own brand ‘Kylie Cosmetics’, with their main product being lip kits to achieve ‘the Kylie look’ (Ruffo 2017). These kits sold out in the blink of an eye, leaving many fans empty-handed (Bailey 2016). Some of these fans, however, still managed to get their hands on what they thought was a legitimate Kylie Lip Kit, through sites such as eBay or markets such as Santee Alley in Los Angeles. In reality, these cosmetic products were replicas, mainly produced in China and Hong Kong, which looked identical to the original. And the Kylie brand is not the only one – many others, including products from YouTube sensations such as James Charles and Jeffree Star seem to be popular on the fake make-up market (Shalby 2020).

The risks

The use of counterfeit cosmetics is unfortunately not risk-free. When beauty products are in high demand, there is very little time to produce a bootleg version. Consequently, very little attention is paid to hygiene standards in production – in fact, these products could be made in someone’s bathroom. A report from the Local Government Association has shown that many counterfeit products often contain large amounts of dangerous chemicals such as lead, arsenic and mercury, but in rare cases also traces of feces (Mackey 2018). This can lead to serious complications – many victims reported skin infections, rashes and chemical burns. Some even reported their lips were glued together as a result of using counterfeit Kylie Lip Kits, as these apparently contained glue (Mondalek 2016).

The future

Despite attempts to regulate this trade, the counterfeit cosmetics industry continues to rise. The solution has to come from the consumer – it is a case of supply and demand. If the high demand for these popular makeup brands decreases, so will the production of knock off versions. Therefore, the only advice would be to stop buying makeup products if you are not entirely sure whether it is a legitimate product you are buying. A cheaper version might look attractive at first glance, but as we have seen, these products are not as attractive as they seem. Risking serious infections in order to look like your favourite social media star is simply not worth it. After all, you cannot pout your lips if they are glued together.

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Roos capel

A first-year anthropology student, aspiring journalist and self-described acid house enthusiast who can occasionally be found singing Britpop songs on a stage.

 

Multitudes of care

A couple of guys are sweeping the floor in the elephant enclosure. With great enthusiasm they scoop the giant piles of manure into cards, which are then wheeled off by one of the employees of the zoo. The only thing that distinguishes them as a separate group is their differently colored shirts. Other than that, they blend in like any other; chatting with the employees of the zoo, greeting the animals by name and putting great care in the upkeep of the enclosures. 

 

Being part of normal life is exactly the goal of this care project, which is a collaboration between ASVZ, an organization that provides care for people with intellectual disabilities and behavioral or mental problems, and Blijdorp Zoo in Rotterdam. In the zoo the clients and care workers work together on the upkeep of the enclosures, the greenery and with keeping the park clean.  According to ASVZ, focusing on controlling problem behavior through protocols, medication, fixation or separation is counter effective. Instead, the care workers of ASVZ go out together with their clients, to engage with meaningful daytime activities. 

 

This project illuminates clearly that care is not a one-way street: The care workers keep an eye out for the clients but, most importantly, they provide the means for them to care themselves. Care is not something that can be encapsulated as something static, which can be bought or given: it is something that is made: created and enacted between caretakers, patients, and in this case, the elephants and their manure.

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Hanna stalenhoef

Hanna Stalenhoef is a PhD student at the Erasmus School of Health Policy & Management in Rotterdam, in which she participates in an action-oriented project on the regionalization of elderly care in the Netherlands. Priorly, she studied Cultural Anthropology in Utrecht, and worked as a research assistant for the ‘Food Citizens?-project in Leiden.

 

Aids and islam in indonesia

Towards a positive turn?

In Aceh, Indonesia, the stigma confronting people living with HIV/AIDS is exacerbated by the stances of conservative Islamic scholars. However, some recent initiatives suggest possibilities for change. “Ustadz [religious teacher],” someone in the audience asks, “I once read in the newspaper that someone was cured of HIV after holy verses were read to him.” “Well,” our discussion leader replies, “nothing is impossible, we can be thankful that all trials have hikmah [divine wisdom].”

Turbulent history

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It is January 2014 and we are at a three-day workshop on HIV and AIDS in a coastal district of the Indonesian province of Aceh. In Indonesia, the Acehnese are often considered to be particularly pious Muslims. This is the region where powerful sultans implemented Islamic laws in the sixteenth century, where at the end of the nineteenth century religious leaders declared Jihad against the Dutch colonizers, and where survivors from the 2004 Indian Ocean Tsunami recovered through prayer, religious chanting, and by confiding to each other that every disaster ultimately has divine wisdom.
This is also the province that, uniquely in Indonesia, started an elaborate process of Sharia implementation in the early 2000s – resulting, among other things, in the public caning of men and women convicted of extramarital sexual activity, gambling and drinking alcohol. In 2018, homosexual men also came to be subjected to punishment by caning, adding to the growing viIolence against LGBT people that has swept through the Indonesian archipelago over the last years.

Rising infection rates

The workshop, organized by a local non-governmental organization, is remarkable, not in the last place because awareness raising workshops on HIV are rare in Aceh. Agreed, HIV prevalence here is still low, but the rising infection rates are worrisome and, as I noticed during my thirteen months of ethnographic research on HIV and AIDS, stigmatization of people living with the virus is huge.

Many ordinary Acehnese think of HIV/AIDS as the result of sinful behavior and consider its presence a blow to the province’s Islamic pride. What is even more remarkable about this specific workshop, however, is that it is delivered by two Islamic Javanese interfaith activists who are themselves knowledgeable in Islam, to an audience of Acehnese religious leaders (ulama) (twenty-one men and four women).

workshop about hiv

With a skillfulness that betrays years of experience, the two workshop instructors involve the audience in sensitive discussions on unlawful sexual intercourse (zina), HIV prevention and care for people living with HIV. On day one, they explain what they call the “medical” approach to HIV, while acknowledging that outside of the scientific field “nothing is impossible.” On the second day, the audience engages passionately in a debate on the permissibility of condoms. Participants fear that the availability of condoms will lead to more unlawful sexual intercourse. Yet many also agree with the instructors that if people engage in unlawful sexual intercourse, preventing HIV transmission is still important.

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extramarital sex

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In the heat of the discussion, one of the ulama in the audience asks: “So if people engage in extramarital sex, is it mandatory in Islam (wajib) that they use condoms? Extramarital sex is sinful. But if they do it with a condom, they also receive merit (pahala) [because they enact something that is mandatory], isn’t that funny?” Another then concludes that perhaps the concept of wajib should be replaced with the general Indonesian word for “should” (harus), relieving the prescription of its Islamic judicial force and merit.

 

On day three, the participants are asked how, with their new knowledge, they would react to a person living with HIV. Responses vary: “I would say indah Allah, la ilaha ilallah (God is beautiful, there is no god but God)” says one of the men. Another says that after what he has learned during the workshop, he wouldn’t run away anymore, but support the person. One of the women says that she still believes that HIV is a curse. Another acknowledges that she now understands that there are different ways of transmission of the virus and that “we can think of it as a trial, requiring forbearance and patience (kesabaran).”

misfortune

While most Muslims living with HIV in Aceh whom I came to know resisted the idea of HIV as a curse, many embraced the notion of a trial, a stroke of misfortune that was meant to test their sincerity and patience, and even a second chance they could use to increase their piety and merit. For them, too, HIV was a disaster that contained divine wisdom: something better would be on the horizon.

Discussions during the workshop, as well as responses from people living with HIV themselves, reveal the complex relation of Islam and HIV in Aceh. Although many living with the virus experience that the societal Islamic pride contributes to misunderstanding and discrimination, Islam is also central to positive, future-oriented, narratives of living a good life with HIV. The workshop was a productive attempt to make the ulama more centrally involved in such a more positive turn that could lead to care and support.

The tragedies of exclusion and stigmatization that befall seropositive people in Aceh do currently not indicate that the situation is changing. Yet perhaps more awareness raising, especially among religious leaders, does have something to offer: In one of the group exercises, participants had to answer the question of what people living with HIV need, apart from anti-retroviral therapy. All groups came up with answers such as “empathy, especially from religious leaders,” and “self-confidence, so that they know they are like others.” “We should give hope to these people,” one group concluded, “Allah gives all diseases and He can cure all of them. A trial makes one stronger.”

Annemarie Samuels

An Assistant Professor at the Institute of Cultural Anthropology and Development Sociology at Leiden University. Her research interests are in the fields of medical and psychological anthropology, narrative, morality, HIV/AIDS, end-of-life care and disaster. Her most recent project focused on care for people living with HIV in Aceh, Indonesia.

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back in life

and in business

One day, a volunteer of the Community Programme for Mental Health at St. Martin CSA reported that she spotted that a man who lived all alone in an abandoned house was behaving strangely. A social worker of St. Martin CSA went to see him and quickly realized that Kinyua needed medical assistance. They arranged a visit to the local hospital where he received treatment. Meanwhile, the social worker together with the volunteer tracked the story of Kinyua and tried to find his family. After much asking around they found his uncle who knew about his nephew but did not know how to deal with his deranged mental state. The social worker explained the situation and the uncle agreed to take Kinyua into his house. Seeing that the medication really improved the condition of Kinyua, the uncle funded him a small business. Kinyua returned into the community and now contributes as a charcoal merchant.

St. Martin CSA is a faith-based grassroots organization in Nyahruru, Kenya, that seeks to improve the lives of socially vulnerable people. St. Martin CSA not only provides support for immediate needs, like transport to the hospital and medication for Kinyua, but also looks for a sustainable solution in the community. St. Martin CSA has found that even in the poorest community there are resources, skill and knowledge that can be mobilized to support vulnerable people in a way that they can lead a life in dignity. Nobody is too poor not to give and nobody is too rich not to receive.

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ICa's online

Exclusives

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eston wahome

Eston Wahome from Nyahururu, Kenya, has been with St. Martin CSA for 20 years as a social worker and counsellor. Working in the Community Programme for Addiction and Mental Health he was able to help many people like Kinyua over the years.

 

Opening up care, with care

bulgarian migrant caregivers in italy

What is care, both in our everyday practices and as a concept? Is it a good thing to care or rather a burden? How do we care (differently) in times of a crisis?

a way of life

For Bulgarian migrant women, working as badanti in Italy, caring has been a way of life for years, and their stories of doing care, with care are stories of coping with crises. In the early 1990s, the socialist party-dictator in Bulgaria embarked the country on a transformation toward a market economy, which saw more than half of the population lose their jobs. This was disproportionately true for women, who were often employed by the state in administrative jobs and in the care sector, since many of these were swiftly cut. As the so-called ‘transition period’ continued into the 2000s, women formed a solid migratory path of temporary work migration to Italy and Spain. They were able to find employment in households, working as caregivers to elderly Italians or cleaning houses and looking after children in Spanish homes.

In Italy, where I conducted a longitudinal study for more than 8 years, Bulgarian temporary migrant women workers are called badanti, living in the house of their employer 24/7 and often working without official contracts and social security. They are able to send money back to their parents and children in Bulgaria and becoming breadwinners within the family.

Having navigated an economic devolution in their home country, they now find themselves engulfed in another crisis, just like the rest of Europe and the world. The COVID 19 pandemic has a tight grip on Italy, and as many elderly die, migrant badanti find themselves before a dilemma – go or stay?

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Care as concept: an ecology of beings

Care has been explored by many authors and has been called “a slippery word” (Martin, Myers and Viseu 2015). Feminist literature has denormalized the concept, showing that care is not always pleasant or necessarily a moral act; that it can just as well be work, an economic transaction or a heavy duty. There is always “dirty work” (Anderson 2000) to be done, floors needing cleaning, bodies needing washing, laundry needing folding. Then care is a job; far from an abstraction, it is a set of practices. Mol et al. (2010: 7) argued that care should be understood as a doing: “Someone has to harvest or slaughter; someone has to milk; someone has to cook; someone has to build and do the carpentry.”

Pictures

Top left              The center of Naples, where many

                               Bulgarian badanti work and live.  

Top right           A Bulgarian mountain village,

                               which has seen many of its women

                               leave for Italy.  

Bottom left      Irena, a badante woman from the

                               North-West of Bulgaria works in

                               this house in a small Italian coastal

                               town. 

Bottom right   Two Bulgarian women work in this

                                big Italian household in Rome.

We also know that this practice of care is more often done by women and distributed unevenly through global politico-economic structures of dependence (cf. (Parreñas 2001). In Italy, it was women who used to care for the elderly and sick. However, when Italian women entered the workforce in the second half of the 20th century, someone had to do the work of care. This is how Italian women were replaced by other women, migrant women, whose entry into the Italian care market allowed patriarchal structures to remain the same, while creating a lot of change elsewhere. In their home countries, the women’s exit meant that children would be cared for by others and that gender ideals would change. It furthermore meant that some countries would supply migrant labour, while others would receive it. This is how, steadily, many north-west Bulgarian villages saw their mothers, sisters, daughters and wives disappear and only return for summer and Christmas, much like exotic birds or well-deserved Christmas presents. This demographic change in one country supported the demographic status quo in another country, dividing the worlds in those who have care and those who do not.

Care and caring therefore may appear simple, in actions like cutting vegetables or pushing an elderly woman’s wheelchair at the sea promenade, but it is more than that. It is a complex phenomenon that is understood differently and that exists within multiplicities of inequality, gender and power. Although care is about doings ‘on the ground’, it is also an abstract, an economy, and a powerful discourse, which deals with inhabiting the same world, the same web of life. Care as an ecology (de la Bellacasa 2017) connects us all – both human and non-human actors – in a world of needing each other.

Care as practice: motherhood in crisis

Before the world was engulfed in a pandemic, Bulgarian badanti navigated their own, local crisis. Leaving and staying were positioned on continuum of care, as the former meant providing their loved ones, and especially their children, with possibilities, financial support, a future. The latter represented the basic understanding of motherhood and duty – staying with one’s children, holding them, putting them to bed, brushing their hair. This moral dilemma required a different set of normative orientation. Within the badanti migrant community, this problem of being a good mother (when?) was framed as a problem of different needs. Young children, they maintained, needed physical love and affection, so a good mother stays with her children, even, and especially during a crisis. Older children – and the boundary between young and old is left ambiguous – need things, material support, education, possibilities, which is why a good mother leaves for Italy and provides these things.

The outbreak complicates this well rooted continuum of care. As more and more elderly Italians are dying and the population goes into social isolation, badanti are often left without an employer and with difficulty finding another job. They suddenly do not earn. Back in their home country their parents might be in danger of falling ill and they want to be with their families. Yet, they are afraid of brining the virus in their homes: “I don’t know what I should do. What is the point of staying here? But if I go home, I might make [my] people sick.”

In the context of a virus, staying away is a form of care, which makes clear how care and caring are wrought with multiplicities and ambiguities. Migrant caregivers perform care for strangers, in order to care for their loved ones and themselves. This care is often physical care; the elderly must be washed, put into bed, given their medication on time. Care is doing. However, this means that others care for their children and parents back in Bulgaria, just like they, as others, care for the Italian elderly they work for. Someone else clothes their children and helps their parents with groceries. In the context of COVID19 care is a biophysical phenomenon, as people must not be together for fear of passing on the virus. Yet, it is also a feeling and a yearning; it cannot be expressed in doing but must be done by staying away.

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Opening up (with) care

We should beware that we do not simplify the notion of care in our work and understanding. The concept has been discussed at length, especially in feminist work, yet it often remains a black box, beguiling with obvious clarity. Of course, mothers care for their children and of course, women are more caring and therefore do more caring work. Or do they? To do good work on care, we should do work with care, asking what is at stake and conceiving of care as a broad, complex phenomenon, rarely offering simple answers.

The stakes during this crisis are familiar to Bulgarian migrant caregivers in Italy. They, just as many others in the world, have been existing within crises for a long time, tinkering with, and navigating difficult choices. Their experiences show that caring can be done in numerous, often contradictory ways and that it is done on many levels – as one’s job, as an emotional need, as a way of life and survival. Therefore, their migrant stories make clear that we do not care differently in times of crises, but rather care itself expands, becoming a slippery concept, a difficult practice and an imperative, as well as a connector of worlds.

Dara ivanova

An anthropologist and writer, working at the Erasmus University of Rotterdam. Her work explores the relationship between place and care (especially the built environment and architecture) and she is interested in place-making, city-making, and migration.

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Bodies, collectivities and forms of knowledge:

Leprosy through the lens of critical epidemiology

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.

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).

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.

 

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’.

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.

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:

  • ‘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?

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.

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).

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?

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.

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.

Debates over a new treatment

A surprising about-face

Glaucia Maricato holds a Ph.D. and M.A. in Social Anthropology and a B.A.in Social Sciences from theFederal University of Rio Grande do Sul (UFRGS/Brazil). Currently she is about to start her two-years project “Absent Presences” as

a Marie Sklodowska-Curie Fellow at the Institute of Social and Cultural Anthropology at Free University Berlin (FUB/Germany) centered on the transnational efforts to eliminate Hansen’s disease as a global and local public health problem. Since 2012 she has been working on the scientific, political, and social aspects of Hansen’s disease through an intense schedule of academic readings, ethnographic fieldwork, and collaboration with teams of university researchers and activists from different countries.

Glaucia Maricato