“The idea people used to have was that Hansen’s disease caused 'the pieces to fall', that you couldn't get close because you might be contaminated”, recalls professor Geraldo Cascaes, 79 years old, who was diagnosed with the disease in 1954. Geraldo’s personal account clearly shows the stigmas that have been perpetuated about Hansen’s disease, especially in the Amazon, where, historically, most Brazilian cases were registered. Today, it is scientifically proven that transmission occurs after continuous contact with the bacteria Mycobacterium leprae – a bacillus that mainly affects the peripheral nerves, eyes and skin – and not from a simple sporadic contact with someone who is diagnosed with the disease.

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Currently, Hansen’s disease is considered a rare disease in Brazil, that is: it affects up to 65 people in every 100,000 individuals. The disease is classified by the health area as one of even greater rarity, as it has an infectious and non-genetic origin, belonging to a group which represent 20% of rare diseases, which can be of infectious, autoimmune, inflammatory nature, among others. Even so, the Amazon remains the region where most cases are registered: in 2021, cases within the region represented 41% of the country's sum, according to data from the Ministry of Health.

According to World Health Organization (WHO), in 2020, out of 19,195 cases registered in the Americas circumscription, 93.6% (17,979 cases) were in Brazil. The country also ranks second among the countries with the highest number of cases in the world, being supplanted only by India (WHO data). In general, Professor Moisés Silva, from the Federal University of Pará (UFPA), explains that many people with Hansen’s disease are not included in the statistics and are not undergoing treatment. One of the reasons for this gap is the lack of information from the population in general about the disease in addition to the low coverage of primary care and the absence of professionals with the expertise for the diagnosis. Currently, the diagnosis is made, in most cases, through clinical evaluation, with physical and sensitivity tests (thermal, painful and tactile). When this analysis is not enough, the Ministry of Health recommends carrying out seven other screenings, including some specific laboratory tests, such as Direct Bacilloscopy for acid-fast bacilli (BAAR), which analyzes skin samples to verify whether the bacteria is present.

Professor Moisés Silva points out that “expanding the use of complementary tests would be a good way to detect the infection in its early stages before the most obvious symptoms appear. For example, the genetic sequencing of bacteria, as done with the Covid-19 virus, and is able to tell us which variant of the virus has infected each person. Molecular tools can help us to understand the dynamics of Hansen’s disease transmission in Brazil and in the world, as well as to know whoever is infected with a bacterium resistant to the medication, but, unfortunately, this test is still not widely available”, explains the professor.

Symptoms - Among the most common symptoms of Hansen’s disease are spots (white, reddish or brownish), tingling sensation in hands and feet, decrease or absence of sensitivity and/or muscle strength in the face, hands or feet. As pointed out by Professor Moisés Silva, witnessing advances in the diagnosis and treatment of Hansen’s disease is also the biggest dream of Geraldo Cascaes, whose statement opened this report: “I have great hope in science and that, one day, Hansen’s disease will be treated much better than nowadays. And that the cure will be really faster to the point that the disease does not leave sequelae in patients. May the patient not face the difficult situations that we still do. This is my dream,” he declares.

Prevention - The Ministry of Health also recommends the BCG vaccine for those who have contact with Hansen’s disease patients and were not vaccinated or received only 1 dose of the BCG in childhood. The BCG immunization is part of the routine schedule in Brazil for children under 5 years of age, with a focus on protection against tuberculosis – another contagious disease, caused by the bacterium Mycobacterium tuberculosis. Although it is not the same bacillus that causes Hansen’s disease, it is of the same genus, which justifies the guidance.

Past experiences involve discrimination and social segregation

The history of Hansen’s disease has left deep marks of social segregation. For a long time, people believed that anyone diagnosed with the disease would need to be completely isolated from the rest of society. Until 1976, patients diagnosed with the disease throughout Brazil were forced to live in "colonies", separated even from their families. They were called "leprosos", a denomination currently considered pejorative, which those who had Hansen’s disease had to carry for the rest of their lives, even after being cured.

That's what happened with Geraldo Cascaes. At the age of 10, he was compulsorily admitted to the former Hospital Colônia de Marituba, in the municipality of Marituba, Pará, where he was isolated from his family. For decades, patients were forced to live only with each other, forming a kind of independent city, with its own city hall, school, health clinic, and, in some cases, even a different currency. In the former colony, even the houses were standardized, in accommodation provided by the Federal Government to house families.

When untreated, the disease can cause deformities and physical disabilities, which are often irreversible. By the time Geraldo was diagnosed with Hansen’s disease, he had already lost part of the movement of his hands and feet. But the physical consequences, even if permanent, do not hurt as much as the emotional impacts that the diagnosis provoked. With tears in his eyes, he recalls the hard experiences of that period, remembering that it was even mandatory that patients’ babies were taken away right after birth, to be raised at the Eunice Weaver Educandário. There, they were taken care of by employees and nuns. Parents could only visit them once a month. Geraldo's daughter and son were already 11 and 9 years old, respectively, when they returned to family life.

Segregation in Pará only ended after the Pope intervened

Edmilson Picanço, 50 years old, was also one of the children separated from his parents at birth. Now he is the coordinator of the Movement for the Reintegration of People Affected by Hansen’s disease (Morhan), in Marituba, a non-profit organization created 42 years ago that has national reach. “I usually say that our parents suffered five times: for the disease itself, for the serious consequences that remained, for the segregation of society, for suffering prejudice and for having their children separated. It's a lot of suffering for just one disease”, he declares. 

Only in 1976, a national ordinance was established ending segregation. In Marituba, however, this action only really occured in 1986, after the visit of Pope John Paul II, who witnessed the situation closely and intervened, asking the Federal Government to end the practice there, Picanço tells.

Even after the change in the public policy, many patients, like Geraldo, decided to stay there, as they had already established their roots in the former colony. “My family was already here, my job was here, what were we supposed to do outside?”, reflects the teacher.

Vatican - In January this year, in the Vatican, Pope Francis also took advantage of the celebration of the World Day to Fight Hansen’s disease (Jan, 30th) to pray and defend the social integration of people who, even today, all over the world, suffer discrimination for having the disease.

Experts study how the bacteria acts

The bacteria that cause Hansen’s disease is transmitted through continuous contact with sick people who have not yet been diagnosed or, eventually, with sick animals. Researchers have discovered that animals with the disease can be other transmitters, such as armadillos, squirrels and chimpanzees. “There is still a lot to discover. The more tests are made, the more it will be possible to understand about it. The bacteria are present in nature and animals can be infected without any human contact”. “This does not mean, however, that these animals should be eliminated. The right behavior is not to come into contact with wild animals, even if they seem to be healthy, not just because of Hansen’s disease. We can transmit diseases to them and they can transmit other diseases to humans", advises Professor Moisés Silva, who has been researching the topic since 2009.

Even if it is unlikely to be eradicated, Hansen’s disease is a curable disease and, for Moisés Silva, it is necessary for the public health system to invest in the training of specialist doctors. “When we manage to early diagnose, we prevent physical disabilities from becoming established (permanent sequelae), which greatly improves the quality of life of people affected by Hansen’s disease", he points out.

Effective treatment and cure in up to twelve months

Currently, the Sistema Único de Saúde (SUS) [Unified Health System] provides treatment with a combination of three antimicrobial drugs - rifampicin, dapsone and clofazimine -, a method called Single Multidrug Therapy (MDT), which allows cure in six to twelve months.

In Marituba, there is a reference center specialized in Hansen’s disease, the Marcello Cândia Regional Specialized Unit (URE), a place specialized in the care and treatment of Hansen’s disease, which provides ambulatory care to infected people and offers training to health professionals in controlling the disease in the state.

Although much progress has been made in the diagnosis and treatment of the disease, for Picanço, a question persists: “Why is there still discrimination? Today, these people who were diagnosed with Hansen’s disease underwent treatment and have not transmitted the disease for a long time, even if they have had sequelae. Even so, there are those people who discriminate, don't want to touch the hand, don't want to stay in the same environment”, he asks.

For this reason, for the Morhan coordinator, there are two main targets to focus on: one of them is that the population has access to qualified information about Hansen’s disease. “This is achieved through public policies, permanent education and communication”, he adds.

The other one is to seek reparation measures for all those people who were affected by the old social segregation. Since 2007, a special pension has been granted to people affected by Hansen’s disease who have been subjected to compulsory isolation and hospitalization. Now, a compensation to children who suffered this separation from the family is still necessary. In some states, there are already sanctioned bills that provide for this measure, but there is not yet a project at the federal level.

DATA/NUMBER OF CASES - HANSEN’S DISEASE IN THE AMAZON (2021)

• Mato Grosso - 2095
• Maranhão - 1824
• Pará - 1.608
• Tocantins - 751
• Rondônia - 318
• Amazonas - 286
• Acre - 127
• Roraima - 57
• Amapá - 31

Total - 7097

Sources: Ministry of Health and State Health Departments