What do epidemiologists do? : investigating a controversial symptomatology in Colombia

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What do epidemiologists do?

Investigating a controversial symptomatology

in Colombia

Master of Medical Anthropology and Sociology University of Amsterdam

8th_{of
August
2019}

Maurizia Mezza: 12280127, mauriziamezza@gmail.com Under the supervision of Stuart Blume

Second reader: Danny de Vries Words count: 21’419

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Preface

In a town on the Caribbean coast of Colombia, El Carmen de Bolivar, different narratives developed around a mysterious symptomatology that appeared in 2014, after the inoculation of the second shot of the HPV vaccine. The Government, after an epidemiological study (Martinez et al. 2015), concluded that the symptomatology was caused by a psychogenic dynamic, highlighting the regional history of violence and the vulnerable social and economical conditions. The girls affected by the symptomatology and their families are convinced that the cause was the mandatory vaccine. I first became interested into this controversy in 2016, when I was a student of social psychology. I was living permanently in Colombia, and during this time I attended a semester in anthropology and sociology at UC Berkeley. While I was there, the encounter with authors like Fanon, Foucault and Illich, together with the Radical Psychiatry movement, deeply influenced my thought.

Even if I felt the hysteria explanation a narrative ultimately silencing the girls, when I started to properly research the events for an academic project, I looked at them from the perspective of the Transgenerational trauma literature (Theidon 2009, Frazier 2009). I have to say that the possibility that the girls were embodying the historical and political suffering of the region was theoretically appealing.

Therefore, a research project about communitarian media in post conflict environments lead me to El Carmen de Bolivar. The social organization that welcomed me, showed me around the region of Montes de Maria, introducing me to other social collectives, the many cultural festivals, the traditions and the regional music. With them I discovered that Montes de Maria, and El Carmen de Bolivar, are places with a complex and long history, much more broad than the massacres and the tortures of the ‘90s. I had the opportunity to talk to some of the girls affected. Hearing at their experiences made me reconsider my approach. The time I spent there and the anthropological critique of the construct of hysteria, which places it as “an imaginary mental disorder invented by Western psychiatry” (Kleinman 1977, 473), made me question to which extent the hysteria was in the girls and to which extent it was in the

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“eyes of the beholder”. While previous social sciences’ studies focused toward the sexual dimension of the vaccine (Velez 2015) and the relationship between the vaccine and the two competing narratives (Tellez 2018), I turned my attention toward the methods and the “eyes” that saw the hysteria. Who and how were the girls and their symptoms assessed? How the girls’ claims were falsified? The Latin American perspective of Critical Epidemiology, framing epidemiological practices and methods as symbolic operations, which are transformed expressions of the power relations of a society (Breilh 2008, Bordieau 1979), became the compass to enter this entanglement. The Illness Narrative approach, allowed me to start the research from the girls’ illness narratives, considering their experiential knowledge, and how it was framed by the epidemiological practice.

However, as a master student of Medical Anthropology who trembled at the sight of numbers, at the beginning I was more then hesitant in approaching the practice of epidemiology. Thankfully, I had the privilege of having a sensitive, patient and wise supervisor. I wish to express my most sincere gratitude to Professor Stuart Blume, who kindly guided me to look at the processes behind the surface of numbers and tables. The possibility of sharing the research process with him was a precious gift for my academic and human journey. His vibrant and thoughtful way of approaching the world has deeply influenced me.

I would like to thank Professor Danny de Vries for showing interest in this work and for being my second reader.

I am extremely thankful to all my informants who dedicated me their time, entrusting my gaze and my words. In El Carmen de Bolivar, I thank the brave and incredibly smart girls and young woman from the heart. They shared with me their precious time, their knowledge, memories, dreams, fears, and worldviews. Your resilience is an inspiration. I thank the community of El Carmen de Bolivar, and the friends that hosted me and helped me there.

I am grateful to the community of the researchers, epidemiologists and State officials who opened me the doors of their professional and personal life, showing interest in my work and perspective. I was touched by your kindness and availability.

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I would like to express my gratitude to Adolfo Baltar, Pompilio Martinez, Mario Lamo, Maria Fernanda Olarte Sierra, Zulma Urrego and all the people that supported me during the fieldwork in Colombia. I am also grateful to the MAS faculty and my MAS fellows, who rendered this a transforming year. Tina thanks a lot for your reviews and encouragement.

This thesis would have not been possible without the support of my family and friends, who accompanied me with their presence, love, and patience. A special thank goes to my parents, to their unconditional support and love, and to my international tribe, which was constantly present from Italy, Colombia, India, and Holland. I am grateful to Matt, who sharing with me the end of this process supported me, and my English, with humour, sensitivity and kindness.

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1. Introduction: a mysterious outbreak

“ Dear Carmen, land of loves, under your sky there are shadows and nightmares. Hiding yourself under the green slopes of Montes de Maria is not helpful. There are rumors about what is happening here, in the intimacy of your streets adorned with sculptures of virgins. Your virgins made of flesh and blood fall apart. With the pieces of weeping and pain, which these 439 girls just vaccinated against a sexually transmitted virus are leaving behind them, your people worked out a puzzle that accuse the Government. The months of fainting and the dances between psychological explanations and laboratory analysis left only a clear diagnosis. Nobody knows what really happened, but everybody knows what stinks” (Marin 2014).

This is the start of an article published in the Colombian newspaper El Heraldo, on the 14th_{of
September
2014.
Paraphrasing
an
old
song
by
a
famous
regional
artist,
the}

writer transforms what was a hymn to the regional beauties into a protest song. When the article was published the dispute between the community of a town on the Caribbean coast of Colombia, El Carmen de Bolivar, and the Government was just reaching its peak.

From May 2014 onwards the community of El Carmen de Bolivar was hit by a mysterious outbreak with a very specific target: female teenagers. The symptoms, that from their first manifestation affected a growing numbers of girls, were general weakness, fainting, headaches, tachycardia, numbness in the extremities, dizziness and sudden paralysis. The community started to blame the human papilloma virus (HPV) vaccine previously administered. The Government, after two months of investigation, concluded that it was a case of collective suggestion, referring to it also as mass hysteria. The rhyme quoted above condenses all the elements of the puzzle that to this day, in 2019, shakes the bodies and the hearts of the people involved: the pain and the preoccupations of the girls’ affected and their families; the temporal link between the symptoms and the HPV vaccine administration; the sexual dimension of the vaccine and of the controversy; the opposition between the local community and the Government (which was blamed for creating confusion with its “psychological

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explanations”); the rumors that grew around these events and the conspiracy atmosphere.

Fig.1 Map of the region Montes de Maria (Moro 2010, 6)

El Carmen de Bolivar is the central municipality of the region Montes de Maria, which extends over the two departments of Bolivar and Sucre, on the Atlantic coast of Colombia. The population is composed of African, European and indigenous descendants (Fals Borda 2002). According to the last available census (Dane 20051_),

438.119 people inhabited the region, of which 45% in rural areas. Due to the fertility of its fields, Montes de Maria was called “the Caribbean kitchen pantry” (Moro 2010) and its economy is still based on agricultural activities (ibid.).

1_{“National
Administrative
Department
of
Statistics”
(Dane
by
its
acronym
in
Spanish)}

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Fig.2 Tabaco leaves in El Carmen de Bolivar

The peasant identity, the musical rhythms and traditions are characteristic pieces of the regional identity.

The history of Colombia is generally marked by violence, exploitation, land expropriations and displacements from the time of the colony (Alvarez 2014), and Montes de Maria is one of the regions most affected. The population has high indexes of poverty and serious lack of access to basic services. More than the 80% of the inhabitants are considered poor, and 85% of the population receives state welfare benefits (Fundacion Semana, 2014). The internal armed conflict strongly hit the region between the 1997 and 2003 (Moro 2010), and in 2014 the Law 1448 of Victims and Land Restitution recognized 194,000 regional inhabitants as war victims (Fundacion Semana, 2014). Despite the social marginalization made worse by the war, the regional identity is strong and people survival has often been mediated by the collectivity (Bayuelo 2016).

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Fig.3 Embroidered fabric exposed at the Itinerant Museum of the Memory of Montes de Maria in El Carmen de Bolivar

In the region’s chief municipality, El Carmen de Bolivar, between May the 28th_{and
the}

30th_{of
2014,
an
number
of
girls,
around
fifteen,
according
to
official
sources
(Martìnez}

et al. 2015), and thirty, according to one of the interviewee (Alejandra interview), complained of tachycardia, difficulty in breathing, fainting, seizures and numbness in the extremities (Martìnez et al. 2015, 43). On the 31st_{of
May,
an
interdisciplinary
team}

organized by the Secretary of the Bolivar department visited the town in order to investigate the events. Each day several new girls started presenting the same symptoms. In September 2014 it was common to see a motorcycle running toward the hospital Nuestra Señora del Carmen, with a fainted girl on the back, whose body was “loaded like a big platanos sack, a sack with a sad face and a school uniform” (Marin 2014). In a few months the number of girls’ affected increased, from the first fifteen to five hundreds in September (Martinez et al. 2015, 42), six hundreds in October (Wallace 2015) to about a thousand today (according to the community). From the outset, the girls and their families started blaming the HPV vaccine, which had been compulsory administered the previous months.

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Fig. 4: The Itinerant Museum of the Memory of Montes de Maria in El Carmen de Bolivar

The mysterious outbreak was notified to the Colombian National Health Institute (INS), a public institute that monitors the population and provides data to the Health Ministry. On July the 10th_{of
2014,
the
girls’
families
met
epidemiologists
from
the
INS}

unity for Vigilance and Risk in Public Health and officials from the Ministry of Health and Social Protection (MSPS), to whom they expressed their concerns related to the HPV vaccine (Martinez et al. 2015, 43). The INS developed a “technical assistance” in the town between July 15th_{to
18}th_{,
during
which
it
addressed
twenty-‐six
cases.
After
a}

month of fears and doubts, on the 21st_{of
August
2014,
the
health
vice-‐minister
and}

the INS director met with the community in El Carmen de Bolivar to announce the investigation results (ibid.). The delegation declared that, “based on the laboratory evidence, the case-‐by-‐case follow up, and the scientific literature review, there is no relation between the public health event and the vaccine administration” (ibid.) On 27th August, the press published the first declaration from the Health Minister about the events in El Carmen de Bolivar, where he affirmed that it was a case of collective suggestibility (Leyva 2014). The then-‐President of the Republic, Juan Manuel Santos, on the 31st (El Pais 2014), expressed his agreement.

The argument between the community and the Government exploded. The girls’ families organized strikes and protests, blocking the regional streets (El Espectador,

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2014). The case of the fainting girls in a town on the Caribbean coast of Colombia became an emblematic case nationally and internationally (Global News 2014, Simas et al. 2019). While internationally it was rapidly labeled as a case of mass suggestion (Larson 2015), in Colombia the media bubble took some more time to burst. During this time, the controversy between the local community and the Government became an increasingly heated conflict. The latter used science, evidence and rationality as its flags, defending the narrative of the psychogenic reaction on the basis of the available scientific evidence. The former counterattacked, referring to the girls’ bodily symptoms, and the scientific literature related to autoimmune diseases (Beppu et al. 2017, Brinth et al. 2015, Anaya et al. 2015). Promptly, the press and public opinion chose one of other sides: defending the local community and blaming the vaccine, or supporting the Government, defending the vaccine in the name of science. Following events through the media, the dispute appears as a battle of “professional” vs “experiential” knowledge, liberally seasoned with emotions. Whilst some newspapers’ screamed for the validity of the experts, with titles like “A vaccine can cure, ignorance cannot” (Soler 2014) or “HPV vaccine, between rumors and scientific evidence” (Fog Corradine, 2018), other appealed to the readers sympathy for the sick girls, “The drama of the fainting girls is continuing” (Diaz 2014), “Maria Alejandra lives the nightmare of Carmen de Bolivar” (Serrano 2014), and “The agony gained over the resistance!”(Leyva 2015). The Government, and the portion of the scientific community that supported it, blamed the press for feeding the general alarm, contributing to spreading the psychogenic symptoms amongst the girls (Martinez et al. 2015, Simas et al. 2019). Slowly the interest shown by the media decreased, and the dispute became a legal struggle less spectacular but that continues even now. Currently, some of the girls affected by the symptomatology have improved, some keep having the crises, whilst some have become worse (some of them developed lupus). Four of them have died. According to the community these deaths are a consequence of the symptomatology caused by the vaccine (Anaya Garrido 2018). The girls and their families blame the State and the scientific community for covering up the truth and for leaving them without support. At the same time, State officials complain because, according to them, whilst scientific evidence proved that the symptomatology was not due to the vaccine, the national HPV vaccination rate has

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dropped. The vaccination rate of the first dose fell from 82.4% of the target population in 2014 to 6.1% in 2016 (data provided by the Ministry of Health and Social Protection). They largely attribute this to the events in El Carmen de Bolivar and the struggles conducted by the community (Benavides and Salazar 2017). One of the effects that the controversy already had, was the sentence T-‐365/17 issued in 2017 by the Colombian constitutional court2. The court decided that the State must not force the Colombian population to be vaccinated against the HPV. On 23rd July 2019 the Secretary of Health from Bolivar met the girls’ parents in a follow up meeting. Many girls keep manifesting crises and symptoms that they relate to the vaccination. However, the state officials keep stating that relying on the scientific evidence the vaccine is not related to the symptoms, which are normal symptoms “reported in any other population on the Colombian territory” (Secretaria de Salud 2019, 5).

2_{http://www.corteconstitucional.gov.co/noticia.php?T-‐365/17-‐Aplicacion-‐de-‐la-‐} vacuna-‐contra-‐el-‐VPH-‐requiere-‐consentimiento-‐informado-‐8234

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2. A multifaceted investigation

This controversy is the subject of the present thesis. This study draws on an intricate network of tensions where different social science literatures meet. In this chapter I will briefly sketch the history of public health and epidemiology in Colombia; discuss how social science has questioned HPV vaccines and policies around the world.

“The Government appointed researchers and experts, amongst which toxicologists, psychologists and psychiatrics, to establish the reality of what is going on” (Diaz, 2014b) the Ministry of Health declared. Thus, the experts that conducted the study, who were being required to identify the cause/s of the symptomatology, became the evaluators and judges of the girls’ experience.

What had happened to the girls was assessed by an investigation developed by the National Health Institute (INS) and the Secretary of the Department of Bolivar. During the few days spent in the town the health authorities studied twenty-‐six cases. According to them, the symptomatology was not an adverse event following immunization (AEFI3_{)
(WHO
2013).
While
the
first
declarations
pointing
to
collective}

suggestion were going around, on the 21st_{of
August
2014,
the
INS
and
the
Ministry
of}

Health made a commitment to the community to set up a deeper epidemiological study. Two reports were produced, and both of them used epidemiological evidence to support the psychogenic explanation. In this complex scenario there are many dynamics in interactions. My interest focused toward the practice of epidemiology, which was in charge of diagnosing the phenomenon. How did the epidemiologists approach and interpret the subjects and their symptoms? This question touches upon several fields and processes in interaction.

If public health is in charge of measuring, valuing and assessing populations’ health (Porter 1999), epidemiology is its “diagnostic arm” (Breilh 2008, 745). Epidemiology is generally defined as the discipline that studies distribution of events related to health

3_{AEFI
is
the
acronym
for
Adverse
Events
Following
Immunization.
It
refers
to
any
impairment,}

syndrome, sign, symptom or rumour, which can be caused or not by a vaccination or immunization process and that happen after the inoculation of a vaccine (WHO 2013).

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and its determinants in humans’ populations, in order to control health related problems (Almeida Filho 2007, Krieger 2011, Hernandez-‐Aguado and Lumbreras Lacarra 2018, Breilh 2013). A university book, used in public health masters teaching in Colombia and in Latin America, states that epidemiology is the field that aims to provide “a scientific base to observe, to define and to quantify problems related to health, as well as to value etiological, preventive and therapeutic evidence” (Hernandez-‐Aguado and Lumbreras Lacarra 2018, 41). This description makes clear the role of the discipline as an “interpretative tool” (Breilh 2008, 745), and its claim for being an objective and value-‐free practice, that assesses health related phenomena according to “objective evidence”. However, epidemiology is a heterogeneous discipline, and during its history several distinctive paradigms have emerged (Ibid.). As Arias-‐Valencia (2018) brilliantly shows, the different versions of epidemiology entail different meanings of what is considered “health”, “disease” and “population”, which have deep ontological, epistemological and ethical-‐political effects. Mainstream epidemiology relies on a positivist paradigm, using inductive reasoning and establishing hypotheses a priori, in line with Popperian epistemology (Popper 1972, Almeida Filho 1992). This approach has consequences for how health, disease and populations are framed, as well as for the conclusions that can be drawn. The emphasis on experimental knowledge, on the biomedical perspective, as well the division between public and private, individual and collective, biological and social, healing and preventive, that still characterizes the epidemiological approach, is a legacy of historical, cultural, and economic processes. Epidemiological practice in Colombia has been strongly influenced by North American methodologies and paradigms. The Rockfeller Foundation and Johns Hopkins University had important roles in the development of Public Health departments in the major universities of the country, as well as on the design of public health programs. The guidelines provided by the Flexner Report in 1910, which established the supremacy of the biomedical reductionist framework in both clinical practice and in public health4, became the

4_{Through
the
publication
of
the
Flexner
report
(1910),
Abraham
Flexner
(linked
to
Johns
Hopkins}

University and the Rockfeller Foundation), promoted the biomedical perspective and the supremacy of the laboratory for the clinic research. Annex 1

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methodological approach followed from 1948 (Corredor 1997, Eslava 1996, Arias-‐ Valencia 2018).

The epidemiological methodologies used by the INS belong to this tradition. The two epidemiological studies about the symptomatology carried out by the INS epidemiologists are (i) a descriptive study, called “Outbreak of unknown aetiology event in the town Carmen de Bolivar, Bolivar, 2014” (Martinez et al. 2015), and (ii) an analytic study, called “Epidemiology and risk factors of the cluster of the unknown aetiology cases and unusual frequency in children and teenagers in Carmen de Bolivar”5. The former, describing the population and the symptomatology within the conventional epidemiology frameworks and tools, concludes that the hypotheses related to immunization adverse effects or to food intoxication are groundless. On the contrary, it developed the argument of the psychogenic reaction, relying on scientific literature and on specific characteristics of the population.

These conclusions are confirmed by the analytical study, which is a case-‐control study. Both these researches were summarized in the presentation of the investigation results the INS did on the community in January 2015 (Martinez et al. 2015 ). However, while the outbreak study is publicly accessible, the case-‐control study is unpublished, and it was impossible to obtain it even under formal request to the INS. It goes without saying that the community has never read it.

Nationally and internationally, the case of El Carmen de Bolivar is quoted as an example of a supposed adverse reaction to the HPV vaccine, which revealed to be a psychogenic reaction. The INS outbreak study is referred to as providing proof (Larson 2015). Throughout the controversy, the Health Ministry, as well as other institutions, (e.g. the National Institute of Cancer), responded to families’ concerns in the same way. The scientific evidence, i.e. the INS studies, is said to have shown that there was no connection between the vaccine and the symptomatology (El Universal 2015).

5_{As
conventional
epidemiology
teaches
observational
studies
“aim
to
describe
a
phenomenon
or
to}

explore the reasons that may explain its origin” (Hernandez-‐Aguado and Lumbreras Lacarra 2018, 86). In epidemiology the design of research can be classified as descriptive and analytical, only the latter “evaluates presumed cause-‐effect relationships” (ibid. 42). Descriptive study basically recollect, analyze and evaluate data related with personal characteristics, time and space factors (ibid.) During the descriptive phase of a study, experts generate hypothesis that need to be demonstrated subsequently.

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However, although the outbreak study doesn’t refer at all to the supposed adverse reactions to HPV vaccine reported elsewhere, the scientific community is anything but united.

Fig.5 Exposition of the tools used to produce vaccines at the National Health Institute

“The discovery that certain high-‐risk strains of human papillomavirus (HR-‐HPV) cause nearly 100% of invasive cervical cancer has spurred a revolution in cervical cancer prevention” (Gravitt 2011, 4594). Cervical cancer is the third most common cancer in women worldwide, and the vaccines that are supposed to prevent it were welcomed as revolutionary (Schiller et al. 2012, Bosze 2013), but also controversial (Kinoshita et al. 2014; Brinth et al. 2015; Prasad 2017) at the same time. In 2006 the Food and Drugs Administration (FDA) approved Gardasil 46, produced by Merck & Co., while the European Medical Agency (EMA) approved Cervarix, produced by GlaxoSmithKline, in 20077. The World Health Organization, the FDA and the EMA agreed that the benefits of HPV vaccines are greater than any very minimal risks (EMA 2015, CDC 2016). However, between 2013 and 2015 controversy developed in several places. The most notable cases of supposed post vaccine symptoms developed in Japan (Kinoshita et al.

6_{https://www.fda.gov/vaccines-‐blood-‐biologics/safety-‐availability-‐biologics/gardasil-‐vaccine-‐safety}

7_{https://www.ema.europa.eu/en/medicines/human/EPAR/cervarix}

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2014), Denmark (Brinth et al. 2015), India (Prasad 2017) and Colombia (Larson 2015, Tellez 2018), but polemics have affected also other states.

In India the controversy is related to a “demonstration project”, launched by the non-‐ profit PATH International, which was considered by critics to be a (post-‐marketing) clinical trial. As such it should have been subjected to severe ethical controls. Instead, critics claimed that it violated ethical standards. Seven girls died in mysterious circumstances (Kumar 2014, Prasad 2017). In Japan, the Health Ministry withdrew the recommendation for the HPV vaccination in 2013, when several adverse events, such as syncope, Complex Regional Pain Syndrome, and impaired mobility, were reported (Morimoto et al. 2015). In Denmark, the Danish Medicine Agency received an increasing number of reports about suspected side effects during 2013. These medically unexplained symptoms mostly affected the nervous system (such as dizziness, headache, disordered sleep), but also included musculoskeletal symptoms. Brinth et al. (2015), who studied the girls affected, found consistency in the patients’ symptoms, even though a causal link to the HPV vaccine was neither confirmed nor dismissed, concluding, “further research is urgently warranted” (Ibid., 4).

Also in other countries concerns regarding the HPV vaccine have been raised. In Spain, where the incidence of cervical cancer is one of the lowest in the world (3,7% for year), critics questioned the need for so expensive a vaccine (464, 58 euro per girl). There were also questions about its safety, in view of supposed adverse reactions (Moreno Castro 2018, 14). In Colombia, similar concerns were raised by part of the scientific community (Sanchez-‐Gomez et al. 2015). Additionally, Anaya et al. (2015) conducted a case study before the events of El Carmen de Bolivar, which described three patients diagnosed with auto-‐immune/auto-‐inflammatory syndrome induced by adjuvants (ASIA) after the administration of Gardasil 4. This Colombian study is accompanied by other researches that report an association between exposure to Gardasil 4 and different autoimmune syndromes where personal and family history of autoimmune disease is present (Arnheim-‐Dahlstrom et al. 2013, Grimaldi-‐Bensouda et al. 2014). Literature contains research about the connection of HPV vaccines with ASIA, an “umbrella” description that includes different syndromes and phenomena8, and

8_{ASIA,
presented
by
Shoenfeld
and
Agmon-‐Levin
in
2011,
is
an
“umbrella”
description
that
includes}

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other autoimmune diseases9 (Arnheim-‐Dahlstrom et al. 2013, Grimaldi-‐Bensouda et al. 2014, Langer-‐Gould et al. 2014, Anaya et al. 2015). HPV vaccines have been analyzed from many different angles, often taking the work of Foucault as starting point. Researchers have unpacked the meanings and the imperatives embedded in this

pharmaceutical technology, highlighting the historical and cultural assumptions, as well as the gender and sexual biases, they perpetuate and reproduce (Casper and Carpenter 2008, Epstein 2010, Towghi 2013). Epstein, for instance, has pointed to the hetero-‐sexism lack of attention for potential benefits of Gardasil in preventing anal cancer – a disease primarily affecting gay men (Epstein 2010). In fact, both Gardasil and GSK’s competing Cervarix were primarily introduced as a cervical cancer protective vaccine targeting only girls and young women. Mamo et al. (2010), analysing the marketing campaign Merck conducted before the FDA approval, showed how advertising rendered “girls and their bodies as being at risk” (121), in order to promote sales. Other researches address the policies related to HPV vaccination. Wailoo et al. 2010 approached concerns about state power, parental power, and teenagers’ rights over their health, bodies and sexuality, whilst Maldonado (2015) analysed the configurations of evidence, efficiency, legitimacy and accountability during the introduction of Gardasil in Colombia.

From development and post-‐colonial positions HPV vaccines are framed as objects of ‘medical colonialism’, highlighting the “hegemonic scientific masculinity” attached to them and the legitimization of “gendered forms of structural violence through the discursive affiliations of progress and global health” (Rawilinson 2017).

Tellez (2018) approached the HPV vaccine from an STS perspective, focusing on the vaccine as a ‘non-‐human actor’ that co-‐produces specific female subjects. The author conducted research on the events that developed in El Carmen de Bolivar, analysing the two competing narratives, the AEFI and the hysteria explanations, and the role the

phenomena, which share common signs and symptoms, such as chronic fatigue syndrome (Shoenfeld and Agmon-‐Levin 2011, Perricone et al. 2013).

9_{It
is
relevant
to
notice
that
autoimmune
syndromes
are
per
se
controversial
within
the
biomedical}

paradigm for the lack of biomarkers and of symptoms patterns (Dumit 2006), as well as for their multifactorial etiology (Anaya et al. 2015). Autoimmune disease are difficult to diagnose and hardly visible within the conventional epidemiological frameworks due to their low incidence, 20 cases per 100,000 person-‐years (Cooper and Stroehla 2003). To illuminate the mechanisms that turn these invisible, as well as the consequences of the invisibilities, many scholars have turned to the illness narratives approach (Kleinman 1988, Kleinman and Benson 2004).

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vaccine itself played. Gardasil became the “guilty non-‐human actor for both contending sides” (288). In both narratives, the AEFI and the mass psychogenic response, it is the vaccine that mobilized human actors, and that rendered the vaccinated girls as “witches, undernourished or obese, victims of poverty and violence, vulnerable, etc.” (289). The study of a similar controversy is worth mentioning.

Goldstein and Hall (2015) analyzed the case of teenagers in the rural US, who, affected by a mysterious symptomatology with seizures and involuntary vocal tics, got diagnosed with collective hysteria. The authors, questioning how the neuroscience narrative prevailed in the struggle amongst competing regimes of expertise, showed that the mass hysteria explication served political and economic interests, withdrawing attention from accountability, and that it “relied and reinforced gender, age and class stereotypes” (641).

All these research lines are relevant to contextualize the present investigation. In fact, the landscape here is formed by the intertwining of, (i) female teenagers from a rural Caribbean town in Colombia who showed mysterious symptoms after the HPV vaccination campaign (ii) Epidemiology, the field that investigates public health related problems and which suggested a psychogenic explanation. (iii) An epidemiological report that doesn’t even mention researches about controversies related to the HPV vaccine, depicting it as “objectively” safe. (iv) A possible link, drawn by a part of the scientific community (Shoenfeld and Agmon-‐Levin 2011, Perricone et al. 2013), between autoimmune diseases, which are per se difficult to diagnose, and HPV vaccines. The present study aims to question if, and, in that case which part, of the girls’ illness experience is contained in the epidemiological report about the events in Carmen de Bolivar. Drawing on the perspectives of the Illness Narratives and Critical Epidemiology, which are explained in the following section, my questions are:

How do the girls narrate their experiences, through what mechanism and to what purposes are their narratives reduced and synthesized in the epidemiological study?

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3. Theoretical frameworks

3.1 Critical Epidemiology

From the late 1970s, Latin American health scientists have been questioning the theoretical frameworks, methodologies and protocols of mainstream epidemiology (Breilh 2008, Victoria 1997, Samaja 2004). This movement, called Collective Health (Almeida Filho and Paim 1999, Breilh 2008), is an interdisciplinary field oriented toward a critical approach to epidemiology and public health. It is characterized by a profound social awareness and an approach to health as a multidimensional object, “submitted to a dialectical process of determination” (Breilh 2008, 747). Relying on a constructivist approach to science, which frames scientific knowledge as a cultural, historical and political production (Barnes 2014, Wright and Treacher 1982, Latour 1987), Critical Epidemiology aims to question the theoretic-‐conceptual dimension of epidemiology, such as causalism, the risk paradigm and the functionalist evaluation of health, diseases, and populations (Arias-‐Valencia 2018). Since it recognizes a dialectic relationship between the biological and the social as dynamic and historic processes (Breilh 2013, Morales Borrero et al. 2013), scholars explore combining social sciences methodologies with epidemiological techniques (Almeida Filho 1992, 73). Its main concern is an effective and pragmatic contribution to a specific problem in a specific political context, and the emancipation of collective subjects (Almeida Filho 2000, Arias-‐Valencia 2018). Questioning the relationship subject/object, critical epidemiologists approach people experience, as well as “their ancestral and present wisdom” (Breilh 2008, 749) as a source of knowledge, from which epidemiology has much to learn.

Thus, the Collective Health movement and the field of Critical Epidemiology conceive health as an object, as a methodological concept and as a field of action (Almeida Filho 2001). Critical epidemiologists discuss the ontological and epistemological premises underlying conventional epidemiology practices and methods, highlighting the lack of neutrality and objectivity (Arias-‐Valencia 2018, Samaja 2004). Epidemiological methodologies and protocols are, in fact, shaped by the dominant moral thought of a society, by its philosophical traditions and ethical-‐political values (R.B. Barata 1998, Hernandez 2011), as well as individual ideas and “social forces, rules, facilities and

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obstacles, under which they must operate” (Breilh 2008, 745). What epidemiologists think, say, do, and what define them as scientific experts, is socially and historically constructed, influencing the knowledge they produce and establishing power relationships both internally as in relation to society (Arias-‐Valencia 2018, Almeida Filho 2007, Krieger 2011, Breilh 2013). Approaching the case of El Carmen de Bolivar from this perspective, I will analyze the epidemiological report realized by the epidemiologists of the National Health Institute (INS). Like all scientific knowledge, the report emerges from a specific history, theories and paradigms, as well as from power relationship and circumstances. Tracing the network of social, historical and contextual relationships, I question what this protocol made visible and what it made invisible.

3.2 Illness Narratives

The Illness Narratives approach suggests that several information, meanings and values come with the patient’s personal accounts of their illness when these are not dominated by physicians’ categories (Kleinman 1988, 42). In combination with critics of biological reductionism, the Illness Narratives perspective highlights the importance of “interpreting people as they interpret themselves” (Kaplan-‐Myrth 2007). From this position, biomedicine struggles in the effort of recasting illness (the personal experience of symptoms) into diseases (the biological alteration) (Kleinman 1988, 3-‐4), reducing all the nuances of varied illness experience into standard categories related to biomarkers, discernable patterns and objective findings. The reductionist position devalues symptoms and suffering that don’t match the disease categories, neglecting the meaningfulness of the patients’ experience and their knowledge (1988, 6). Blume (2016) reports that Borkman introduced the term “experiential knowledge” in 1976, referring to “the truth learned from personal experience with a phenomenon rather than truth acquired by discursive reasoning, observation, or reflection on information provided by others”. This kind of knowledge, however, has no “inherent” authority (Blume 2016, 9) and is delegitimized by the biomedical framework. Dumit (2006) addressed these kinds of dynamics in the experiences of patients with chronic fatigue syndrome and multiple chemical sensitivity. Their suffering is not recognized without biological evidence that fit the biomedical codes and the doctor-‐patient relationship is described in terms of “symbolic domination” (Melucci 1996). The author depicts a

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landscape where a struggle “experts vs lay people” is at play, and where biochemical medicine, law, insurance and bureaucracy are attuned in recognizing only one kind of knowledge, with very specific requirements. This, as well as other works (Nettleton 2004, Johansson et al. 1999, Ware 1992), shows the invalidation of “experiential knowledge” (Borkman 1976) as well as the emergence of psychosomatic explanations when biomedical evidence lacks. Pointing at illness visibilities and invisibilities, Masana (2011) addressed how “illnesses are not ‘naturally invisible’” (145). Illnesses are made invisible “by the sick person, by a specific culture or socio-‐historical moment, or by a hegemonic biomedical model working in harmony with a political model that follows its own particular economic rationality” (ibid.). Cultural meanings are, in fact, entailed with psychosomatics in a medicalized Western society, and psychosomatic explanations become useful blaming tools that render sick people “responsible for their suffering and illness situation” (Masana 2011, 138). As a counterpoint to the biomedical framework, the illness narrative analysis offers a method that embraces and values other facets of human experience. The Illness Narratives approach, listening to the peoples’ stories, suffering and meanings, allows recognizing experiential knowledge, opposing the “epistemic invalidation of experiential claims” (Dumit 2006, 580).

The experiences of the subjects interviewed by Dumit (2006), as well as the cases addressed by Masana (2011), highlighted dynamics that resonate with the experience of the girls affected by the mysterious symptomatology and their families in Carmen de Bolivar. The “intense interplay between diagnosis and legitimacy” (Dumit 2006, 578), the self-‐accusation and self-‐de-‐legitimation that result from suffering from symptoms on the biomedical threshold and “the epistemic invalidation of experiential claims” (Ibid., 580) are some of the experiences the families are going through. Relying on this perspective will enable me to bring to the foreground fragments of the symptomatology lost during the epidemiological synthesis, and to analyze the epidemiological process of codification.

What do epidemiologists do? : investigating a controversial symptomatology in Colombia