Segregated by the disease, now people with leprosy have to fight for dignity

Publicação: 9 de April de 2018

The sad reality of victims of the breakdown of a net crafted with sweat and tears, of a disease that disappeared in theory but remains alive and kicking, in the everyday new cases

Land regularization is an expensive and long-lasting process. It does not matter to governments, mourns Thiago Flores, who was raised in Santa Isabel colony

Despite all alerts for leprosy, Brazil stands out in the world for the disease’s expressive detection rate. In absolute numbers, it is second only to India, which has a much greater population. “We register approximately 30 thousand new cases every year, mostly in the North, Northeast and Center-West regions of the Country, from which currently Tocantins is the state with greatest incidence, followed by Mato Grosso.”. Tocantins has surpassed Mato Grosso last year due to the work held by the Palmas Municipal Secretary of Health, that intensified Basic Attention actions, growing from 150 to 800 new cases per year”, said the former president of the Morhan [Reintegration of People Affected by Leprosy Movement], Artur Custódio.

Besides the physical and psychosocial impacts faced by affected people and their families, this sad reality worsens when people affected by leprosy in the past are pushed to the colony-hospital, in São Paulo, which currently hosts 180 people, mainly elders. “The removal of people, regardless of being children, elders or with disabilities, under the excuse that people with leprosy have already died is unacceptable. Under this excuse they are evicting people from the colony”, Custódio criticizes. In an official statement, the São Paulo State Secretary of Health said that residency in the site is restricted to family members of patients still under treatment in the unit; according to a state regulation and that ownership repossessions are supported by law. According to the Movement’s attorney, Thiago Flores, who was raised in Santa Isabel colony, the land regularization process is expensive and time-consuming and does not meet all governments’ interests.

Currently Brazil has 27 colonies and each one has its own reality. According to Morhan’s former president, some have achieved great advances in assistance and others in citizenship. “There is a resolution by the UN Human Rights Omission requesting for affirmative actions in the colonies. In this sense, both Rio de Janeiro and Acre have conducted land regularization, slightly different models due to each state’s land legislation, but both have issued property titles. Now the same process is being carried in Betim, Minas Gerais, issuing ownership titles of houses for those living in them.

However, Custódio also shows the opposite picture. “The same Resolution requires that in these colonies, no initiatives able to result in prejudice can be implemented, as for example, the construction of a penal institution. Yet they are present in some. Another example, drugs. For the colonies in São Paulo and Pernambuco, projects aim to build a Crack Treatment Center”, he rejects.

As told by the Movement’s former president, the Ministry of Health (MoH) launched a workgroup that started its activities in late March and intend to visit all 27 units along with Morhan. The activities began at Porto Velho colony. “There are positive experiences in several colonies that can be replicated”, Custódio adds.

Lawsuit requests damage remediation for children separated from their parents with leprosy by force

In late 2017, Morhan filed in São Paulo Federal Court a Public Civil Suit in behalf of the “separated children”, requesting remediation about the policies that isolated people with leprosy from social interaction, promoting compulsory separation from their children, affecting the lives of thousands of people until the 1980s. “Brazil was the second country in the world to indemnify those who lived in the old colonies (the first was Japan) and with this initiative, we could have been the first country in the world to acknowledge the State crime against children separated from their parents during the Leprosy Hygienist Policy”, Custódio stresses. The request to the Federal Court includes a request for summary judgement, i.e., claiming anticipation of the sentence due to the urgent needs of the separated families, many of which already in advanced ages. The strategy includes a possible request to the Interamerican Human Rights Commission, depending on the Brazilian justice performance.

Suit requests:

– Recognition of responsibility by the Brazilian state due to policies of isolation and compulsory separation of children from parents with leprosy between 1923 and 1986.

– Publication of all data existent in records regarding separated children.

– Payment of compensation in monthly installments in the same figures and terms of law 11.520, from 2007, to children who were separated.

– Creation and implementation within the Unified Health System (SUS) of public policy for psychological and psychiatric services, for separated children who wish and need.

– Adoption of leprosy eradication policy broadly disclosed in mass media.

– Creation of five memory centers, one in each Brazilian region, in honor of separated children and registration as heritage of the 29 existing schools.

– Inclusion, by order of the Ministry of Education, of the history of separated children in the formation of health and justice professionals in all public universities in the country.

Activist against leprosy is honored in Mato Grosso

Manfred Robert Göbel was sent to Brazil by the German Leprosy Relief Association (DAHW) in 1979. DAWH is part of ILPE, a federation of 14 international active organizations that fight leprosy in the world, inclusive in Brazil. He arrived with the mission to work along with Mato Grosso’s government to fight the disease. Manfred started his mission in the interior of the state, where he covered the poorest areas, indian villages and the Pantanal delivering information and medical assistance to the sick that did not have access to health services. In 1993, DAWH, aiming to increase its actions in the state, transferred its headquarters to Cuiabá. The ceremony took place in April 03 and had the goal to honor the philanthropic work held by Manfred fighting leprosy, tuberculosis and poverty in Brazil, especially in Mato Grosso.

Leprosy in the state – Brazil’s Ministry of Health Information System for Notifiable Diseases, also known as SINAN, reported that Mato Grosso has registered the Country’s highest leprosy detection rates. In 2015, the rate of new cases was 93.00/100,000 inhabitants, totalizing 3,037 new cases. In 2016, 2,658 new cases were reported. From 2009 to 2016, the state reported 1,334 cases in children younger than 15 years of age, corresponding to 6% of all reported cases. The numbers from the survey regarding 2017 are not concluded and will be presented in late May. Preliminary data from the Ministry of Health point to approximately three thousand new cases reported in Mato Grosso.

*More information about the disease, dial telehansen: 0800 026 2001