The stigma still surrounding leprosy

One of the earliest leper hospitals in Britain was built in London near the beginning of the 12th century by Queen Matilda, the wife of Henry I. It was a benign combination of housing, hospital and chapel, with patients free to come and go as they wished. Matilda started a fashion among the wealthy, so that by 1350 there were more than 300 such hospitals across the kingdom. Far from lepers being shunned and feared as outcasts, therefore, their treatment for much of the medieval period was enlightened. 'The mythology of the 'medieval leper' seems no more real than that of the vampire or ghoul,' writes Oliver Basciano.
The author is a journalist who has worked for the Financial Times and the BBC. His interest in lepers was prompted by unfounded claims from a Trump supporter that migrants were carrying leprosy into the US from Mexico. He says that Outcast is not a medical history; rather, it is a history of the stigma of leprosy. Basciano is often polemical; he invokes Susan Sontag, Michel Foucault and Edward Said to inveigh against the 'othering' of lepers. Whether such ballast is necessary is doubtful. The history he recounts is fascinating in its own right and also makes self-evident that victims of this horribly disfiguring disease have endured some of the worst ostracism of any social group.
Basciano discovers that the demonisation of lepers in the media is nothing new. By the Victorian era the disease had left Britain but it persisted elsewhere, often in tropical climates. An authoritative literary magazine, The Nineteenth Century, denounced 'the dark cloud of leprosy' as a threat to empire and demanded that lepers should be segregated. It insisted that this was an advance on the medieval era, when – it falsely asserted – lepers were banished from society or even executed.
Nevertheless, many lepers remained free under colonial administrations. Their biggest concentration was in India, where there were an estimated 1.5 million by the time of independence. The Raj did not segregate most of them, but that was more about economics than health policy, since it lacked the funds to do so. The failure to build institutions for lepers continued after 1947; as Basciano says, there was a 'lack of any proper policy from the Nehru government to deal with them'.
Some of the stigma around leprosy lessened during the 19th century, due to heroic efforts by charismatic individuals. Basciano visits Siberia in the steps of the British nurse Kate Marsden, who was inspired by Florence Nightingale and undertook perilous journeys to tend to lepers in far-flung places. Marsden was lauded by Queen Victoria, but her career ended amid scandal around her sexuality. She was excluded from society in a fashion, Basciano observes, not so very different from many of her patients: 'None but a few of her grand friends wanted to be associated with a gay woman.'
Scandal also descended upon the father of modern leprosy treatment, the Norwegian physician Gerhard Armauer Hansen, who established that the disease was spread by infection rather than heredity. Leprosy is often now referred to as 'Hansen's disease'. Unfortunately he also carried out procedures on patients without their consent, which means that his other, back-handed, legacy to medicine is the development of medical ethics.
At the opposite end of the spectrum from Queen Matilda and her peers is 20th-century Japan, where lepers were rounded up and confined in what were essentially penal institutions, even after it became clear that segregation had little medical basis. Eugenics featured in health policy and many lepers were sterilised. Following lengthy campaigning, the government apologised and distributed compensation as late as 2001. No apologies came from members of the medical establishment, however. 'I still get the feeling that many don't think they did anything wrong,' reflects a former inmate.
Cures for leprosy based on antibiotics were eventually discovered in the mid-20th century. Basciano brings his story up to the present with a surprise: leprosy is still with us. It remains endemic, for instance, in India, Indonesia, Brazil and Mozambique. Lack of public awareness means that it is a poor relation for funding compared with diseases such as malaria and HIV. Staff from the Leprosy Mission charity tell Basciano that fundraising is hard 'in a world that thinks the disease is long gone'.
Politics is another problem. Basciano visits Mozambique and sees at first hand how a jihadist insurgency is undermining medical assistance. But greater difficulties may be in store. Outcast was completed before the current cuts in overseas aid, which could further hamper global action to eradicate leprosy. This would be tragic. Basciano uses an impressive level of detail to underline the reality that poverty and lack of access to medical services mean that lepers remain some of the world's most marginalised people.

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