Brazil is second, after
India, for the total number of cases of
leprosy in the world. In 2003, there were nearly 50,000 new cases
of leprosy detected in the country. Several million Brazilians
live in favelas today. The situation in the favelas, with people
living
in cramped quarters, are ideal for the transmission of the disease.
By Cassandra
White
"Leprosy? That comes from dogs, right?" ("Lepra? Vem do
cachorro, né?")1 "Doesn’t that cause your
limbs to fall off (cair em pedaços)?"
One of the first things
I learned as I conducted anthropological research on cultural aspects of leprosy
in Rio de Janeiro is that few people in the general public in Brazil knew
much about this disease or how it is transmitted.
Why would it be important
to know more? This disease couldn’t be a problem in the modern world, could
it? Unfortunately, the incidence of leprosy is still very high in a number
of countries worldwide, and Brazil is second, after India, for the total number
of cases of the disease.
In 2003, there were nearly
50,000 new cases of leprosy detected in Brazil.
Leprosy is caused by the
bacillus Mycobacterium leprae and is closely related to the tuberculosis
bacillus. Like TB, it is transmitted through breathing—through droplets
emitted by a person with an active case of the disease.
Unlike TB, however, it
is not highly contagious. Most people (90-95%) have a genetic immunity to
leprosy, and leprosy experts generally say that prolonged and intimate contact
with a contagious individual is required for a susceptible person to acquire
the disease.
Leprosy is also known
as Hansen’s Disease (and is commonly referred to as hanseníase
in medical and media reference to the disease in Brazil), after Gerhard Armauer
Hansen, the Norwegian scientist who first observed the bacillus under a microscope
in 1873 and identified it as the cause of leprosy.
Leprosy does not cause
limbs to fall off or flesh to rot. The bacillus does damage the peripheral
nerves, causing insensitivity or lack of feeling. Nerve damage is the major
cause of disability associated with leprosy.
The painlessness that
results from nerve damage allows affected individuals to ignore cuts, burns,
and other injuries sustained during everyday activities. These injuries may
thus become infected or even gangrenous, and amputation is required in some
cases.
A patient in early stages
of the disease often has very minor symptoms, such as a whitish or depigmented
spot that is numb. If leprosy is detected and treated during its early stages,
patients are unlikely to develop any physical disabilities or deformities.2
A multidrug therapy treatment
program, which cures the disease and renders patients noncontagious, is available
free of charge in Brazil at public health posts and hospitals. Why then, is
leprosy still such a public health problem in Brazil?
Indians Didn’t
Know Leprosy
The answer to this question
is complex. One might first ask why leprosy was ever a problem in Brazil.
The disease did not exist in the Americas prior to colonization by Europeans.
Leprosy was present in
Portugal and in other nations that sent ships to Brazil (Holland and France,
for example); some of the healthcare workers with whom I worked in Brazil
told me that one of Pedro Cabral’s (Cabral was a Portuguese explorer whose
ship was the first from Europe to land on Brazilian soil) men was infected
with the disease.
The Portuguese imported
nearly 4 million enslaved Africans to Brazil, many of them from areas where
leprosy was endemic, and the conditions of slavery (close quarters and harsh
working conditions, for example) may have contributed to the perpetuation
of the disease.
The abolition of slavery
in 1888 was followed by the development of large shantytown, or favela,
communities in Brazilian cities, as freed slaves could not generally afford
to buy their own homes or own their own land.
Several million Brazilians
live in favelas today. The living conditions in the favelas,
in which large families usually share a relatively small space, are ideal
for the transmission of leprosy.
Brazilian history is also
characterized by the frequent movement and migration of peoples in search
of jobs and better economic conditions, and internal migration is often a
boon to the spread of disease.
The continued existence
of leprosy in Brazil today can be linked to the current socioeconomic situation.
Leprosy is not a tropical disease; in the past, leprosy was endemic in many
parts of the Northern Hemisphere.
It was eradicated from
Europe, North America, and Japan as living conditions improved for the general
populace and as potable water, sanitation, and adequate nutrition became accessible
to people in all social classes.
A recent article on Brazzil’s
website3 included the statistic that 90 million people in Brazil,
nearly half the country’s population, do not have proper sewage collection
and treatment; another 15 million are without garbage pickup services.
These factors serve to
lower overall immunity in people susceptible to leprosy and thus may increase
the chances for people to acquire the disease.
Although a drastic improvement
in living conditions for the majority of Brazilians would almost certainly
result in the elimination of leprosy from Brazil, it is currently more practical
to seek other solutions to this problem.
Early detection of the
disease is the most important factor in halting its spread and preventing
disability. Many physicians in Brazil do not recognize leprosy in its early
stages.
Misdiagnosis Is
Common
In interviews I conducted
with 43 people affected by leprosy in Rio de Janeiro, 41% had received a misdiagnosis
of their condition. Healthcare workers who are not trained in leprosy diagnosis
mistook skin patches and nerve problems for various ailments, including diabetes,
vitiligo, allergies, skin funguses, arthritis, and syphilis. Some patients
were given treatment for other conditions and spent years trying to get a
correct diagnosis.
In a nation where there
are so many new cases of leprosy every year, there is no logical reason why
all healthcare professionals do not receive mandatory training in leprosy
diagnosis, which is relatively simple.
For example, Boy and Girl
Scouts in several endemic countries have been trained as volunteers in leprosy
screening efforts. A person with a depigmented spot on the skin should be
asked to close their eyes while another person lightly taps the spot with
the tip of a pen and asks if he or she can feel anything.
If the person has no feeling
in the spot, he or she should be directed to a treatment center for leprosy
to confirm the diagnosis.
Media campaigns in Brazil
in recent years have attempted to raise awareness of leprosy and its symptoms
among the general public in Brazil. MORHAN (the Movement for the Reintegration
of people affected by Hansen’s Disease), a non-governmental organization with
offices in nearly every state of Brazil, organizes educational campaigns in
schools and in the media designed to reduce stigma and to increase the potential
for patients to diagnosis themselves and seek the appropriate treatment at
a health post.
MORHAN maintains a telephone
line (Telehansen) to which people from all over Brazil can call with questions
they have about leprosy. MORHAN has recruited celebrity volunteers, such as
actress Solange Couto and singer Ney Matogrosso, and has worked with novela
(Brazilian fixed duration soap opera) writer Glória Perez to incorporate
the topic of leprosy into an episode of The Clone, a hugely popular
novela which aired in 2001-2002.
Treatment for leprosy
is in the process of being decentralized in Brazil, which means that, ideally,
people affected by leprosy will be able to receive treatment at any public
health post in Brazil.
This will increase access
to treatment for those who live further away from centers that exclusively
treat leprosy; there are potential drawbacks to this approach, since patients
with complications associated with nerve damage require specialized care to
prevent severe disability, but decentralization has the potential to reach
more affected individuals throughout the country.
Leprosy remains a major
public health problem in Brazil, though its presence is often overshadowed
by the presence of other serious infectious diseases that receive more media
attention, such as HIV and TB.
However, leprosy complicates
the lives of tens of thousands of Brazilians every year. Several thousand
patients are rendered temporarily or permanently disabled each year, forcing
them to rely on government pensions, or in the case of some of the undocumented
domestic workers I interviewed who had leprosy, on the kindness of charitable
groups, friends, and family members.
Leprosy elimination is
not an easy task in Brazil, but it is possible. Elimination will require a
sustained focus on the part of the Brazilian populace and the international
community.
1. The belief
that leprosy (lepra) comes from dogs is a common folk belief in Brazil.
It may derive from the fact that lepra is also a word for dog mange.
This is one of many reasons, including the stigma associated with the term
lepra, that the term was outlawed in Brazil in 1995 in favor of hanseníase
(Hansen’s Disease).
2. This figure
is based on the World Health Organization’s document, Global Leprosy Situation
2004. Online: http://www.who.int/lep/stat2002/global02.htm (individual
country statistics in spread sheet document, "Details by Country").
3. https://brazzil.com/mag/content/view/139/2,
"In Brazil 90 Million Have No Sewage Collection," Agência
Brasil; accessed September 10, 2004.
For further information
on Hansen’s Disease/leprosy, consult:
MORHAN’s website (in Portuguese):
http://www.morhan.org.br/
Brazilian medical research
institution, Fundação Oswaldo Cruz (site in Portuguese): http://www.fiocruz.br/ccs/glossario/hanseniase4.htm
World Health Organization:
http://www.who.int/lep/
Cassandra White – http://monarch.gsu.edu/people/cwhite.htm
– has a Ph.D. in Anthropology from Tulane University. She is a Visiting
Lecturer in the Department of Anthropology and Geography at Georgia State
University in Atlanta, GA. She is currently writing a book about her research,
conducted in 1998-1999 on a grant from the Fulbright Organization, on leprosy
in Rio de Janeiro. She can be reached at cwhite@gsu.edu.
