Opinions

Three Decades of Struggle

Artur Custodio

National Coordinator for MORHAN(the Movement for the Reintegration of Persons Affected by Hansen’s Disease)

MORHAN was established at the beginning of the 1980s. This was also a time when public policies on Hansen’s disease in Brazil were changing from compulsory segregation toward outpatient treatment with multidrug therapy. There was a need to lessen social prejudice against people affected by Hansen’s disease, as well as to make progress toward eradicating the disease itself. Hansen’s disease requires continuous action, and it takes a long time for the effects of that action to be seen. Most government officials involved at different levels neglected long-term action that should have been implemented. That is why Brazil still has so many cases of Hansen’s disease.

There are two key issues facing people affected by Hansen’s disease in Brazil. The first concerns the former colonies where the people affected by Hansen’s disease were quarantined. Residents are getting older and also need access to high-quality medical care for other diseases as well. Furthermore, there are issues involving citizenship, quality of life, and use of existing infrastructures that need to be addressed. The second key issue concerns poor access to medication and treatment. There is a need to achieve a better understanding of Hansen’s disease throughout society by strengthening and expanding information, education and communication.

In the 1990s, MORHAN’s efforts led to the abolition of discriminatory laws and the official prohibition of the use of the term “leprosy.” In 2007, these efforts were also influential in the signing of a provisional measure by President Lula da Silva, which subsequently became law, to compensate persons who were forcibly segregated. To date, more than 5,500 applications for compensation have been approved.

Without a doubt, people affected by Hansen’s disease have much to contribute to public policies. The knowledge and actions of people who have experienced disease can be effective in solving the problems related to Hansen’s disease. I’ve been with MORHAN since I was 16. I’ve learned that people are not and should not be treated as commodities, and that respect for all forms of life is fundamental. I’ve learned that we should be less competitive and cooperate more. Today, I am passing on to the younger generation what I’ve learned. It fills me with pride to see them engage in social struggles and activism.(Dec, 2010)

Original article

Artur Custodio
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