Chagas: it’s time to break the silence
Millions of people are infected with Chagas
disease yet they do not know.They candie in silence, without asking for help, without
knowing why. It´s time to act: diagnose
and treat now!

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Chagaswww.chagas-break-the-silence.com

One hundred years ofneglected patients2009 marks the centenary of the discovery by the Brazilian
doctor Carlos Chagas of the disease which bears his name.
In 1909, Dr. Chagas announced to the world the existence ofa new infectious disease. The previous year, he had discovered
the parasite which causes it and the vector by which it istransmitted. His triple discovery is considered unique in thehistory of medicine.
One hundred years later, there is still a lack in the innovationof treatments and those that do exist are not available
to the majority of sufferers. One hundred years later, manyof those infected with Chagas disease are still unaware that they
are sick. They are dying without knowing why and doing
so in silence. Their voices do not reach the governments whichshould be responding to this public health problem, or thepharmaceutical companies which could be researchingand developing new medicines. For one hundred years, Chagas
disease has been a silent illness. The time has come to breakthe silence.

What is Chagas disease?
Chagas disease, or American humantrypanosomiasis, is an infectious diseasecaused by the Trypanosoma cruzi parasite.
Endemic in several Latin Americancountries, cases are found in rural areas,
indigenous communities and the poorest
suburbs from Mexico to Argentina,
including the Caribbean. The diseasecauses 14,000 deaths each year. It isestimated that 10-15 million people sufferfrom the disease and 100 million more,
25 per cent of the population of Latin
America, are at risk of contracting it. As
a result of the increase global migrationand mobility, an increasing number ofcases are being reported in the UnitedStates, Europe, Australia and Japan.

How is it transmitted?
Certain insects of the Triatominae
species, known as ‘assassin bugs’ or‘kissing bugs’ depending on thegeographical zone, transmit the parasite
to humans. They live in cracks in thewalls and ceilings of houses made fromadobe bricks, sticks, straw, etc., and comeout at night to feed on blood. When an
MSF 2

Chagas: it’s time to break the silenceassassin bug carrying the parasite bitesa person, it deposits faeces on the skin.
If the person scratches or rubs their eyes
or mouth after touching the bite, theparasites can then pass into the bloodstream. If an infected person is bitten byanother assassin bug, the parasite infects
the insect and the cycle goes on.
In many Latin American countries,
prevention programmes are being
developed with the aim of reducing thepresence of the vector (the transmitting
insect), but not all of them are as effective
as they should be and they are neverenough to eliminate the disease.
Chagas disease can also be transmitted
through blood transfusions, frommothers to their children during
pregnancy and, less frequently, throughorgan transplants or the ingestion ofcontaminated food. It is not transmitted
through direct contact with infectedindividuals.

Diagnosis
The majority of people infected with
Trypanosoma cruzi, the parasite whichcauses Chagas disease, show some signor symptom at the time of infection.
In a small number of cases acute Chagas
disease causes death. For the majority,
the symptoms go unnoticed and for years
those infected have no further problems.
It is estimated that approximately 70 per
cent of these people live with the parasite
without their health being affected.
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MSF 4© JuAN CARLOS TOMASI— As evidence regarding the effectivenessof treatment in adults is very recent,some doctors remain unconvinced as tothe viability of treating adults andpatients in the chronic phase withexisting medicines.
— The possible undesirable effects arealso an obstacle. Many doctors and nurses
are reticent about beginning treatment
for fear of causing unpleasant side effects.
— Vector control is not integrated withtreatment of patients. Combined withineffective efforts to combat the assassin
bugs, this has caused the insect and thedisease to reappear and patients to become
re-infected.

© ANNA SuRINyAC— With the methods currently available,
conﬁrming the cure of adolescentsand adults can take years, making the
research and development of new
medicines difficult, and dissuading many
sufferers from starting treatment.

© MAIDO ARENASTreatment
There are currently only two medicines tocombat Chagas disease: benznidazole
and nifurtimox. Both were developed over
35 years ago and in investigations not
specifically aimed at Chagas disease.
Nowadays, neither of these drugs is
adapted for paediatric use and nor can theybe used by pregnant women. The successrate reaches almost 100 per cent in
newborns and infants. However, in older
children, adolescents and adults treatment
is only around 60 or 70 per cent effective
and can have multiple side effects, andtherefore has to be taken under medical

supervision. This means having a weekly
check-up with a trained healthcare worker.
Until a few years ago it was thought thatthe treatment was only effective in very
young children and not in adults. However,recent studies demonstrate that it ispossible to treat adults, even after the heartor the gastrointestinal tract are mildly
affected (initial clinical forms of thechronic phase). As the side effects of thetreatment are more common in older
patients, doctors have been reluctant toadminister the medicine out of fear of theconsequences. We now know that theadverse effects are manageable.
Before starting treatment for Chagas
disease, it is necessary to check that theparasite has not seriously affected the heartor other vital organs. In some very
advanced cases, there is no evidence as yetthat the treatment is beneficial because
T. cruzi has already caused serious vitalorgan damage. On the other hand, adults
aged 50 and above - probably infectedby the parasite in their childhood oradolescence - who have not developed any
pathology are most likely to fall within
the 70 per cent who will not suffer organ
damage. In such cases, and bearing in mind
the toxicity of the treatment, the risks
and the benefits for each individual haveto be assessed before starting treatment.
Barriers to accessMillions of sufferers, especially in rural
areas, have neither the opportunity
to find out that they are infected nor the
possibility of being treated. This is dueto the numerous obstacles which could be
avoided with greater political will
and greater investment in research anddevelopment:© JuAN CARLOS TOMASINevertheless, in the chronic phase of
the disease, 30 per cent will develop
problems in their heart, gastrointestinal
tract and central nervous system whichcause irreversible damage. Since it is
impossible to predict who will develop
the disease, treatment should be offered
to all sufferers, with assessment of theirclinical status and age.
As the disease often does not present
symptoms, active detection of cases
should be a priority in programmes tocombat Chagas. Diagnosis currently
requires confirmation through laboratory
tests. In many cases, the endemic
countries do not have the necessary
facilities or staff available to carry out
these tests. It is essential that
communities living in endemic zones
have access to diagnosis and can find out
if they have been infected with T. cruzi.
If not, thousands of people will die eachyear without knowing the cause.

— Conﬁrming diagnosis of Chagas
disease requires laboratory tests, whichmeans that the patient cannot get theresult on the first visit to a health centre.
Chagas: it’s time to break the silence

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Testimonies“Many people think that nobody
gets sick or dies from Chagas
and fortunately, in many cases,
that’s true. But in many othercases they get very sick, mostly
with heart problems, butalso intestinal, and they can die.
And these are very sensitive
cases, which hit communities
hard because it is young people,of working age, with families
who die.”

Alejandra Barón lives with her husband
and two sons, aged 5 and 2, in one ofthe poorest districts of Cochabamba in
Bolivia. When she was pregnant withher second son she was told she had
Chagas. She took her oldest son Kevinto the health centre and he also tested
positive. He was the first to be started on
medication. “He remembered the pills
himself and asked me for the treatment,”
explains his mother. Alejandra had to
wait to give birth and to finish
breastfeeding her baby before the two
could start treatment. She had somedifficulties giving the treatment to her
young daughter as it was hard todissolve the tablets.

Víctor Conde, field doctor with the MSF
project in Cochabamba“I knew nothing about Chagas disease
until I got pregnant and they told me.
I asked, “What’s that?” and they told methat it came from the assassin bug andI remembered that there were manyassassin bugs when I lived with mymother. That must be it, I don’t see any
assassin bugs here, only in my village,”
explains Alejandra and she adds: “Wepoor people who come from villages in the
country are the ones who get Chagas.
Yes, I felt like going from house to houseand explaining it to them, especially inthe countryside.”

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Laura (not her real name) is 39 and lives
in the city of Cochabamba. She has
suffered a great deal with Chagas disease
and, although she tells her story so that
others don’t have to go through what she
did, she doesn’t want to speak in frontof the camera. “I found out seven years
ago. I couldn’t even walk a block without
feeling tired. I went to the doctor andhe told me that it was too late to start
treatment, that I would have to get apacemaker. I ignored it and then I went
to MSF, where they told me the same. I
think I became infected 19 years ago andI only found out seven years ago!”
When they told her that she needed apacemaker, Laura’s husband insisted ontaking out a loan to pay for it. But Laura
refused. She didn’t want to owe money
and was very afraid about the surgery,despite the fact that it could save her life.
MSF arranged for an Americanorganization to insert the pacemaker for
free, but even then she didn’t want it.
Her cousin and her uncle died, probably
from Chagas disease, after they had
had pacemakers inserted.

A few months ago, Gualberto Paniagua,
33, was diagnosed with Chagas and heis now taking medication for the disease.
“Up until now I haven’t felt anything,so I could have said ‘why should I taketreatment?’ But in the future I could haveproblems, so if I have the chance I haveto try it. If there is a chance, I have totake advantage of it and get treatment
because you never know. I’ve seen family
members, who were healthy, die. If there
is a treatment, you should take it.”
Gualberto is from the rural part of
Cochabamba and believes that he became
infected when he lived in his parents’house because there were a lot of assassin
bugs. “I’m 33. Why didn’t they treat me
when I was 15?” he asks. “In my town
several people have died, adults and young
people. It was said that it was from
Chagas, but we never knew where thedisease came from. We now know that theassassin bug is the carrier.” Gualberto ismarried and has two daughters. His wholefamily has taken the test for Chagas
disease. He and his older daughter are
the only ones infected. His daughter will
start treatment in the coming months.

“It hurts when you find out and they tell
you there’s no treatment. I had beenmarried for four years then. I have tried
to work and I have managed to get thishouse, I had to do it for my daughters,”
explains Laura. She adds: “My family has
suffered, my mother, my brothers,
because they said that my heart was very
inflamed. My youngest daughter would
ask me why I was crying. Later I mademyself become calmer because I didn’t
want my family to suffer”.
Chagas: it’s time to break the silence

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Estimated global
population infectedby Trypanosoma
cruzi, 2009
No estimated cases
Less than 1.000
1.001 - 10.000
10.001 - 100.000
100.001 - 1.000.000
1.000.000 and above
References:
1 OPS/HDM/CD/425-06 Estimación
cuantitativa de la enfermedadde Chagas en las Américas.
2 Guerri-Guttenberg RA. Grana D.R.,
Giuseppe Ambrosio, Milei.
J. Chagasic cardiomyopathy: Europe
is not spared! European Heart
Journal (2008); 29: 2587-2591.
3 Schmunis. G. A. Epidemiology of
Chagas Disease in non-endemic
countries: the role of internationalmigration. Mem Inst Oswaldo Cruz,
Rio de Janeiro, Vol. 102 (Suppl. I):
75-85, 2007.
4 De Ayala A. P. Pérez-Molina
J. A., Norman F., and López-Vélez
R. Chagasic cardiomyopathy ininmigrants from Latin America toSpain. Emerging Infectious Disease
Volume 15, Number 4-April 2009.
5 According to the numbers of
inmigrants registered for 2007 in
the website of the Japanese
Ministry of Justice and estimatedseroprevalence for non endemic
countries according to ParicioTalayero J. M. Vigilancia
epidemiológica de la transmisión
vertical de la enfermedaddel Chagas en tres maternidadesde la Comunidad Valenciana.
Enferm Infecc Microbiol Clin
2008;26(10):609-13.

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Chagas: it’s time to break the silence

MSF 9Research andDevelopment:
100 years ofprocrastination

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A recent G-Finder study reveals that lessthan 0.5 per cent of all worldwide Researchand Development (R&D) into neglecteddiseases in 2007 was aimed at Chagas
disease.
With the limited resources currently
available to treat Chagas disease, medical
teams have to deal with many shortfalls
and sometimes they don’t have anytreatment options. New diagnostic tests,
better medicines and cure tests urgently
need to be developed to deal with thisillness.

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Better diagnostic tests
Currently, MSF uses a rapid diagnostic
test to detect cases. Following therecommendations of the World HealthOrganization (WHO), all positive cases
are confirmed with two conventional
laboratory serological assays. If there
is any discrepancy between the two tests,
a third laboratory test must be used toobtain a reliable result.
In contexts with limited resources,
such as rural areas in Bolivia, where theincidence of the disease is high, the ideal
would be to have a highly sensitive andhighly specific rapid diagnostic test which
would reveal whether the patient was
infected or not in a short space of time andwould not require specialized laboratories.
If a single test is not possible, a combinationof two rapid tests could be another option.
More effective and less toxic treatments
There are only two medicines for treating
Chagas disease (benznidazole andnifurtimox). The possible side effects fromthe treatment mean that some patientsare unable to complete it and that it is
impossible for sufferers to take it without
supervision by trained healthcare workers.
This all results in restricted access to thetreatment, above all in rural areas or where
there are no specialised human resources.
The problem is particularly serious in adult

MSF 10patients and at the moment, there are stillno paediatric versions of the treatment.
The Drugs for Neglected Diseases
initiative (DNDi), of which MSF is one of
the founding members, is working on apaediatric formula of benznidazole which
will probably be available at the end of
2009. DNDi is also working on possible
alternative treatments such as
posaconazole. Regretfully, these drugs
are a long way off from being available inthe market, and at low cost, and theireffectiveness is still far from being
demonstrated.
There is an urgent need to develop newless toxic medicines which require ashorter course of treatment, are effectivein the acute and chronic phases of thedisease in both adults and children, and aresafe for pregnant women.
Testing for cure
The current serological methods can takedecades to confirm the effectivenessof treatment in adolescents and adults. PCR(polymerase chain reaction) techniques,
based on genetic information, have a low
sensitivity and specificity for parasites, andthey are only available in some research
centres. Development of rapid treatment
tests which allow for the effectivenessof treatment to be measured and cure to be
confirmed in the first two years after
treatment for all age groups is essential.

and spraying with insecticides.
Nevertheless, the assassin bugs have now
been found to be resistant to certain
products. In addition, to eliminate theinsect, spraying must be continuous andhousing must be improved.
Furthermore, greater effort must be
made to ensure the quality of blood banks
to avoid contamination from transfusions
or transplants, and to continue to
implement prenatal detection control
strategies for pregnant women to avoid
transmission from mother to child.
Helping governments to find alternative
sources of R&D funding for Chagas disease
The lack of commercial incentives hasrelegated Chagas disease to be forgotten.
In 2007, only $10.1 million dollars werespent on R&D for this disease. Less thanhalf of this was spent on treatment,
vaccines, diagnostic tools and vector
control products1. In 2006 the WHO
Commission for Intellectual Property
Rights, Innovation and Health (CIPIH)
recognised the failure of current incentives
and financing mechanisms for neglecteddiseases. There is a need to identify new
incentives for R&D, including those which
de-link the costs of R&D and the final priceof health products to obtain better and new
diagnostics and treatments.

Better prevention strategies
Treatment for Chagas disease does notmean that a person cannot become
infected again by a bite from an assassin
bug. Vector control strategies, which
are fundamental to limit the spread of thedisease, depend on detecting the vector

1. Neglected diseases Research & Development: how much are we really spending? by Mary Moran, Javier Guzman, AnneLaure Ropars, Alina McDonald, Nicole Jameson, Brenda Omune, Sam Ryan, Lindsey Wu, published by PLoS Medicine,
February 2009, Volume 6, Number 2
Chagas: it’s time to break the silence

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© Juan Carlos Tomasi© anna surinyac© SERGE SIBERTMSF experiencein the fieldIn 1999, Médecins Sans Frontières (MSF)
set up its first diagnosis and treatment
project for sufferers of Chagas disease in
Yoro, Honduras. Since then, theorganization has developed several
programmes in Nicaragua, Guatemala
and Bolivia.
In 2002, MSF began its first Chagas
disease project in Bolivia, the country
with the highest incidence of the diseasein the world. For four years, theorganization worked in the rural areaof Entre Ríos, in the province of O’Connor,
in the Tarija region, treating patients
up to the age of 15. Following this, MSF
increased treatment up to the age of 18 in
a new project, this time in suburban zones
in two districts of Sucre, also in Bolivia.
Based on the experience acquiredin their projects and the results of recent
studies into the effectiveness of thetreatment in adults, MSF is now working
in three suburban districts in the cityof Cochabamba. The activities are being
carried out in collaboration with the
Bolivian Ministry of Health in an
integrated way in five primary care
centres, where children and adults up to
the age of 50 are treated and diagnosed.
Using the same approach, theorganization is currently setting up a
new project in the rural zone of
Cochabamba region, where it is working
to involve the communities in all aspectsof the strategy (prevention, diagnosis
and treatment), in an area where thevector is much more prevalent.

At the end of 2008, MSF had tested
over 60,000 people for Chagas disease
and treated 3,100 patients, of whomaround 2,800 successfully completed
the treatment. This shows that, althoughcurrent resources are not ideal, thediagnosis and treatment of Chagas diseaseis viable in environments with limited
resources and remote areas if various
coordinated activities are carried out:
— Informing and educating the
population about possible means oftransmission, symptoms, treatment andthe basic hygiene and prevention
measures for the disease. This includes
educating local authorities, healthworkers, community leaders and thefamilies of sufferers.
— Integrating vector control withdiagnosis and treatment programmes
to avoid new infections. Houses where
sick people are living must be checked forthe presence of the vector and fumigatedwhen necessary, but the importance ofprevention should not mean thattreatment is relegated to second place.

hospitalisation (0.07 per cent in MSF
projects) and no deaths.
— Training healthcare workers in the
diagnosis, treatment and supervisionof patients.
There is a need for doctors forcontrolling serious side effects, nurses forearly detection, monitoring and adherence
to treatment, and laboratory technicians
for the tests to confirm infection.
— Ensuring supply and logistics toattend to rural communities (the mostaffected). For this, it is of the utmost
importance to have a strong supply chainof medicines and laboratory reagents,
as well as the capacity to store serologicalsamples in optimal refrigeration
conditions for future treatment tests.
In addition to these six components,
the motivation and commitment of thehealthcare workers and the patientsthemselves in tackling the disease, as
well as government support, areessential if the programme is to bea success.

— Actively detecting and diagnosing
infection. The lack of symptoms and the
problem of access to diagnosis for a large
section of the at-risk population continue
to be a serious problem. It is for thisreason that MSF recommends thedetection of Chagas in endemic areas;
the availability of rapid tests makes
this much easier.
— Treating the sick. The treatment of
Chagas disease has to be supervised
weekly by qualified healthcare workers, as
it can cause side effects. With goodsupervision, these effects are manageable
and a high percentage of patientscomplete the treatment, with a low
incidence of adverse effects requiring

MSF 12Chagas: it’s time to break the silence

MSF 13

The time hascome to act!
Historically, Chagas disease programmes have focused on
prevention of the disease and on vector control. Now, knowingthat the majority of those infected by the parasite can be treated,
this focus, which excluded treatment, is no longer acceptable.
In its ten years of experience in the field, MSF has proved thatthe diagnosis and treatment of Chagas disease, even inremote rural environments, is viable, necessary and ethicallybeyond question.
It is time for the governments of endemic countries
to fight on all fronts against Chagas disease:

DIAGnosis! DIAGNosis!
Diagnosis of the sick at the primary care level: Integrating
the diagnosis of Chagas disease at the primary care levelwith available resources. Carrying out routine analysis to findthose infected with the parasite, especially in areas where
vector transmission is active, in rural zones and zones which
receive immigrants from endemic areas.

should be treated. Adults should always be assessed to see whether
or not it is possible to start treatment. Treating adults withmild heart problems may prevent these from progressing. Thereis no evidence regarding the effectiveness of the treatment
when damage is very advanced. In those over 50 who were
probably infected in their childhood or adolescence, the risks
and benefits of treatment should be assessed.

ch nce!Determining
prevalence!
prevalence!
the prevalence of Chagas: Systemising thecollection of data on Chagas disease to establish the number of
infected in an area and using this information to calculate thereal requirements for medicines and laboratory reagents, to beable to ensure the availability of diagnosis and treatment.

tro! supply!
supply!
Reinforcing the supply chains: In order for medicines anddiagnostic tests to reach the primary care centres in the remotest
zones, strong supply chains are needed. In addition, doctors
should ask for the medicines they need.

control!
control!
control!
diagnóstico! diagnóstico!
Vector control activities: When treating a patient, theirhouse and environment need to be assessed for the presence ofthe vector, and fumigated if necessary. In addition, systematic
nt!Treatment
treatment!
tratamifumigations should be carried out in risk areas to control thefor children and, wherever possible, for adults,
in the primary care system: Free treatment for children
and adults, with monitoring of possible side effects. All children

spread of the insect, and at the same time investment should bemade in improving housing.

MSF 14Chagas: it’s time to break the silence

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This year is the centenary of the discovery
of Chagas disease. Based on our experience,
MSF appeals to the governments of endemic
countries to increase the use of existing
diagnostic tools and treatments, as well as
access for patients to the care they need.
Likewise, MSF underlines the urgent
need for improved rapid diagnostic tests,
new less toxic and more effective medicines,
paediatric formulas and treatment tests.

diagnosis! diagnosis! diagnosis! diagnosis! diagnosis
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