Leprosaria – a continuing social challenge

In the early days of leprosy care, with very little in the way of chemical treatment, the recognised way of treating leprosy was to remove people from their homes and put them into leprosaria. The 1897 Leprosy Congress recommended that leprosy could be prevented by isolation. They took as their model for leprosy control the model Hansen had set up in Norway consisting of compulsory registration, control and isolation. All over the world there were large leprosy colonies, some were institutions such as Carville, others were islands such as Robben Island and Spinalonga. In India and other endemic areas the approach to leprosy was the same. People affected by leprosy were put into colonies or institutions and leprosy control was run as a vertical programme. Leprosy was not unusual in this; other diseases were similarly treated. There were TB sanatoria, mental asylums, schools for asthmatics, institutions for the disabled. The idealised approach was to provide high quality specialised care and to protect the community from harmful or potentially infectious diseases. However, the reality was that it removed from society ‘deviants’ who, because of disease or disability or behaviour out of the accepted norms, did not fit and were seen to be shameful or a burden or a threat. Leprosy seems to be all those things. Hence in the west the treatment was more akin to being sectioned in a mental asylum, with people being virtually smuggled in barges into Carville or arrested. Although some of the best leprosy research took place in the institutions, it was inevitable that this social isolation would enhance stigma and produce institutionalisation. At no point did there seem to be any consultation with the people affected by leprosy. This social isolation was deemed for their own good even if it involved separating mothers from children or wage earners from their families. The WHO expert committee report in 1953 noted the difference between ‘open and closed’ leprosy and started to introduce the notion that not everybody should be isolated. They also noted that ‘institutional isolation alone has not given the results expected of it and has failed as a control measure even when applied vigorously and on an adequate scale’. It wasn’t until 1960 that the second report talked openly of the psychology of being disabled and having leprosy. The authors were now convinced that institutionalisation was not the way forward, particularly for the disabled. No doubt that emergence of Dapsone and the