Professional Documents
Culture Documents
1
PhD in Social Sciences,
Facultad Latinoamericana ABsTRACT This article analyzes the century-long persistence of Chagas disease in
de Ciencias Sociales. PhD Argentina, taking into account the different dimensions (the biological, the informational,
in History of Science,
Université Paris 1 Panthéon the political, the professional and the technical) that take part in the disease’s definition.
Sorbonne. Researcher of Emphasis is placed on the identification and discussion of fundamental tensions that
the Consejo Nacional de
Investigaciones Científicas
have marked the history of the disease, with the intention of discussing the concrete
y Técnicas at the Institute conditioning factors that have, on the one hand, permitted the continuity of Chagas as
of Science and Technology a subject of political consideration, but on the other have made it impossible to reach a
Studies, Universidad
Nacional de Quilmes. situation of definitive control over the disease.
Director, General Archive Key WORDs Chagas Disease; Knowledge; History; Policies.
of the Nation (Argentina).
jpzeta@unq.edu.ar
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perturbations of the cardiac rhythm are very fre- promoting and articulating different studies that
quent” (6 p.265). looked in to many of Chagas’s initial concerns (f).
The reverberations of Chagas’s announcement In that context, the disease increased in im-
lay not only in the scientific ability to identify a portance as the number of “acute cases” compiled
new species but also in the capacity of those asser- grew. This growth was favored by the discovery of
tions to propose a biologically-based explanation “Romaña’s sign” – an inflammation of the eyelid
for a social situation of poverty, deprivation, and caused by the bite of the vinchuca – which al-
underdevelopment, via the identification of causes lowed the disease to be identified by non-expert
invisible to most people. With this demarcation, the physicians (2,9,16,17,18). By the late 1930s, the
experienced eyes of a scientist trained at the fore- disease began to be considered a public health
front of the protozoology of the time, with access problem of great importance within the scientific-
to a scientific laboratory and with a prestige con- medical field, thanks to the accumulation of cer-
solidated in previous successful public health cam- tified cases and the intensive activities of scientific
paigns (c), offered a new lens for understanding the communication carried out by Mazza and his
decades-long misfortune of millions of people scat- collaborators.
tered across the immense region of Brazil set away Nevertheless, despite the resurgence of
from the coast. And, from this point of departure, Chagas as a subject of professional interest, the
the articulation of a political movement – led to a definition of the clinical profile of the disease
great extent by Chagas – that proposed the “saniti- remained erratic. Goiter and nervous conditions
zation of Brazil” through the eradication of certain lost importance in the definition of the clinical
agents hazardous to public health, with scientific profile, while the cardiac form of the disease,
research spearheading these measures (9,10). starting in the 1930s, became the main interest
Nevertheless, Chagas’s description in the first of research studies, both in Argentina and Brazil.
years of the disease then became the subject of long- Chagas and his disciples maintained, within a
standing professional debates which questioned the small group, their interest in the issue in Brazil:
seriousness of the disease and marked the transition “The cause-and-effect relationships, if indeed
from a first stage of wide recognition to another de- they exist, between goiter and infection by Try-
fined by uncertainty, controversies and, definitively, panosoma cruzi are debatable. […] It is an open
neglect. In particular, the difficulty of demonstrating question that merits further studies and insights”
cases that confirmed the magnitude of the disease [“Discutíveis são as relações de causa e efeito,
(d) and the continued questioning of the relationship acaso existentes, entre o bócio e a infecção pelo
between the parasite and goiter radically rocked the Trypanosoma cruzi. [...] É uma questão aberta,
foundations of what had constituted the disease as a a merecer estudo e perspicácia.”] (19 p.63). Not
public health problem (e). until the 1950s did Chagas cardiopathy become
Many years elapsed before reaching the the object of systematic research for cardiologists,
current definition of the disease as characterized who defined within the framework of that spe-
by cardiac and digestive conditions. From the cialty both the specific characteristics of Chagas
early 1920s to the late 1930s, research regarding in relation to other cardiac diseases and the di-
the disease focused on defining the true effects agnosis of “chronic Chagas cardiomyopathy” via
of the parasite, the way to identify infected indi- electrocardiogram (g).
viduals, and the possibility of distinguishing a With this description of the cardiac profile,
specific clinical profile. This task took on special the disease broke the random barrier separating
significance in the studies carried out by Sal- the infected from the ill: having Chagas disease
vador Mazza in the Study Mission on Regional would no longer mean simply testing positive
Pathologies of the North [Misión de Estudios de in a biochemical test for Trypanosoma cruzi in-
Patología Regional del Norte] in the mid-1920s fection, but also developing a specific condition,
(13,14). At a time when it was believed that the identified by the instruments and knowledge of
disease did not exist in Argentina, Mazza explored cardiology. Therefore, its importance as a public
the matter in the context of a program of study health problem was based on a specific number of
on regional pathologies in the north of Argentina, individuals with a condition impairing their work
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in terms of mortality and morbidity. In particular, the recognition of and fight against epidemics, em-
this term is applied to those diseases that do not bodied principally by the figure of Ramón Carrillo,
represent an economic interest to the pharmaceu- Minister of Health under Peron’s government.
tical industry that would justify the development Therefore, Chagas disease came to be categorized
of new drugs. The consequence of this lack of in- as a “national problem” (21) and around it an insti-
terest is that there is little dynamism in the devel- tutional apparatus was developed which included
opment of modern and more effective treatments, programs for fighting the vector as well as the
as in the case of Chagas. planning of activities for diagnosis, research, and
This neglect can also be perceived in other development of alternative treatments.
dimensions such as in the lack of initiatives for The main Chagas intervention policies were
disease treatment, control or eradication, even oriented towards interrupting infection by the
if the necessary means of preventing or curing vector, that is, infection through the bite of the
those diseases exist, frequently at a low cost. vinchuca. These policies manifested themselves
However, the image transmitted by the term “ne- in different ways throughout the 20th century.
glected” should be somewhat attenuated, at least They were first implemented by the Executive
for Argentina. Chagas disease has remained an Committee for Chagas Disease Research and Pro-
important issue both in the public health agenda phylaxis [Comité Directivo de Investigaciones y
and in the collective conscious at least since the Profilaxis de la Enfermedad de Chagas], created
1950s, and is still the object of specific health cam- in 1950 as the first institution officially respon-
paigns carried out by the government and NGOs, sible for fighting the disease, which reported to
including vector control, housing improvement, the recently created National Ministry of Health.
and actions to educate and raise awareness in the This Committee saw the beginning in Argentina
populations in which the disease is still endemic, of what its director Cecilio Romaña, former col-
among other measures. league of Salvador Mazza, called “the era of re-
The official recognition of Chagas as a public sidual insecticides and [of] the ‘new awareness’
health problem dates back to the late 1930s. As awakened by preventive medicine” (22 p.215).
a sign of this interest – recent at that time – on Throughout the years, this institution un-
the part of the State, Alfredo Sordelli, Director derwent several transformations. In 1952 it
of the Carlos G. Malbrán Microbiology Institute became the National Service for the Prophylaxis
highlighted the following at the 10th Pan American and Fight against Chagas Disease [Servicio Na-
Sanitary Conference in 1938: cional de Profilaxis y Lucha contra la Enfermedad
de Chagas], also headed by Romaña, “in charge
The infestation is spread all over the Argentine of the implementation, enforcement and surveil-
territory […] Recently there has been such a lance of the programs created for such purposes”
recrudescence that the number of cases (Executive Order 2177 on July 8, 1952). It was in
reaches at least 300. We therefore consider this context that the first Chagas disease control
the problem worthy of great attention (16 measures took place, following the technical
p.450) [Own translation]. considerations that emerged from Romaña’s ex-
perimental studies. The first insecticide-spraying
It was not until the end of the 1940s that campaigns (with Gammexane) were conducted
this recognition assumed greater importance, systematically in the provinces of Chaco, La Rioja
owing to the convergence of three independent and Catamarca, though these campaigns were
processes: a) the redefinition of the disease in of an experimental character and the number of
medical and epidemiological terms as a chronic houses sprayed was quite limited in scope (23).
and mainly cardiac condition affecting approxi- In the period succeeding Peron’s gov-
mately 1,000,000 people in the country (the ernment, both institutional transformations and
number of people presumably infected with the medical care for Chagas were constants. The
parasite); b) the availability of Gammexane as the consolidation of Chagas disease as a major social
primary means of fighting the insect vector; and problem was accompanied by the creation of
c) a context of public health policies favorable to a series of institutions aimed at identifying and
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PEOPLE WITH CHAGAS: SICK, INFECTED, and eradication of this endemic disease in the
OR INVISIBLE? country” (26 Art.1). The primary objectives of the
law were, on the one hand, “to elaborate tech-
In terms of social practices, a disease is the nical norms […] for the development, execution,
result of a set of actions that arise from the recog- evaluation and control of programs in the fight
nition of its specificity. In the case of Chagas, this against Chagas,” and, on the other hand, “the
process involves specific actors – the individuals registration, orientation and treatment of the
with Chagas themselves, the physicians who treat sick” (26 Art.2). The first purpose was connected
them, government officials, and even the rest of to structures already in existence, with the law
society that reacts in different ways to the public stipulating the need for collaboration among the
manifestation of the problem – who associate the public health authorities of the different districts.
idea of the disease with knowledge that serves as Regarding the second purpose, however, the law
a parameter for their actions. Thus, every disease introduced some significant changes in the norms,
plays a social role fundamental in the lives of the establishing compulsory Chagas testing in five key
subjects implicated. From the diagnosis of the areas: upon entry into military service; in blood
disease to the taking on of a specific role con- banks and hemotherapy services (both already
nected with that disease, the everyday actions of under regulation since the early 1960s); upon
the individuals implicated will be affected, one entry into primary school; in routine health exams
way or another, by the expectations and shared for pregnant women; and in pre-employment
meanings of what this diagnosis implies. medical examinations.
In Chagas this aspect generates a rather para- This government initiative could at first seem
doxical situation, which reflects the tension be- to favor greater recognition of the disease. Never-
tween visibility and invisibility constantly at play in theless, in reality, it has clashed with other factors
its definition as a social problem. On the one hand, that have tended to “invisibilize” the disease in
the statistics show that a large number of people the social arena. One of these factors is the ten-
are affected, to the extent that Chagas disease is dency of infected individuals to hide their con-
considered the greatest endemic disease in the dition, especially when looking for employment,
continent in epidemiological terms; in Argentina due to the discrimination they may face. As the
alone it is estimated that there are 1,600,000 in- disease may imply a disability impairing physical
dividuals infected with the parasite. On the other activity, those infected with the parasite (even if
hand, the individuals directly affected by Chagas they have not developed any symptoms of the
have not, throughout the history of the disease, disease) may find themselves in less favorable con-
constituted themselves into a significant collective ditions for obtaining employment than those who
actor capable of demanding recognition or rights are not infected (27 p.553). Paradoxically, this
or making specific claims, as has been the case in 1980s law requiring pre-employment serological
other diseases such as HIV/AIDS (h). testing as a means of providing greater visibility to
From a formal point of view, recognition the disease, and thereby of facilitating its control,
of the affected individuals – whether in terms of has not become a useful tool for the incorporation
“victims,” patients, or subjects of rights – has been of the disease in the everyday life of the affected
a historic demand of the medical community and population. Instead, the law has turned into a new
has been implicit in every affirmation made about obstacle individuals must overcome to avoid dis-
the importance of the disease as a public health advantages, not related to the physical grievances
problem, from the incorporation of the disease themselves, but rather to the marks that their rural
in specialized conferences and its inclusion as a past has left in their immune systems.
disease of obligatory denunciation to the incorpo- The consequences of Law 22360 were so
ration of research in routine health controls. paradoxical that in 2007, Law 26281 on Chagas
In more concrete terms, Law 22360 was en- Prevention and Control (28) reconsidered this
acted at the beginning of the 1980s, stating that unfavorable situation. This new law includes the
preventing and fighting Chagas disease was of previous statement on the prevention of and fight
“national interest,” in order to “favor the control against Chagas disease as an issue of national
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and those who suffer from it. Thus, even while that Chagas becomes a way to name these popu-
acknowledging the social importance of the lations, either to show solidarity with them or to
disease, due to its geographical spread and the identify them as a population that needs only to
type of populations it affects, in the use of these be cured.
categories of analysis we must not overlook the re- This exercise may be done in a more or less
ductionist exercise of the dominant urban medical critical way, emphasizing the imposition of a bour-
discourse that subsumes a complex situation of geois and urban medical discourse on a strange
living conditions, cultural diversity and profound rural reality, or proposing a strategy for relating to
material deprivation to a single symptom: carrying diverse social sectors so as to help those sectors
the parasite. The shortage of clean water, the pre- develop tools that will eventually enable them to
carious state of housing constructions, the limited carry out strategies of protection and control of ad-
access to basic health and education services, the verse situations. In any event, this article aims to
lack of employment and food, the continued clash recover both the complexity of the disease and the
between indigenous cultures and the ways of life diverse rationalities existing within the perspec-
of western capitalism, the lack of recognition of tives of the actors involved, as a means of under-
civil rights and undocumented migrations, among standing the depth of the problem of Chagas as it
other factors, are disguised behind a medical di- is configured, concretely, in the society in which
agnosis. Indeed, we could call this a social synec- it is immersed.
doche: representing the whole through a part, so
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The disease in its labyrinth: advances, challenges and paradoxes over 100 years of Chagas in Argentina 19
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CITATION
Zabala JP. The disease in its labyrinth: advances, challenges and paradoxes over 100 years of Chagas in Argentina.
Salud Colectiva. 2012;8(Suppl 1):S9-S21.
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The translation of this article is part of an interdepartmental collaboration between the Undergraduate Program in
Sworn Translation Studies (English <> Spanish) and the Institute of Collective Health at the Universidad Nacional
de Lanús. This article was translated by Victoria Vallejos and Patricia Velázquez, reviewed by Mariela Santoro and
modified for publication by Vanessa Di Cecco.
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