THE hamlet of Anandwan is in a sleepy part of eastern Maharashtra, a state in the west of India. Here, overlooking a pastoral landscape, cows munch on feedstock, geese plop and paddle in a nearby lake, men rise early to farm the fields and women knit away at scarves and handkerchiefs. By noon they retire to their communal homes for a siesta. The scene is familiar to much of rural South Asia. If not for the residents’ halting gait, the visitor might not realise that he has arrived at an unusual village.
Anandwan is a rehabilitation centre for 1,800 leprosy patients. Most have been completely cured of the disease, though many are marked by it, and only a handful of them are disabled. Every year Anandwan’s cottage industries earn $400,000, which they plough back into the village’s development. Its hospital treats new admissions by prescribing “multi-drug therapy” (MDT), a specific combination of three pills which takes between six months to a year to kill the leprosy-causing germ, Mycobacterium leprae. Anandwan has healed more than 900,000 patients since it was founded in 1951 by Baba Amte, a lawyer-turned-activist. Most of them have since rejoined society.
The story elsewhere is not so happy. Leprosy continues to cast its pall over the rest of India. In many states its sufferers are barred from getting driving licences, travelling on trains or contesting elections. Cured patients are ostracised and confined to 1,000-odd isolated settlements, many of them slums. Married women are often driven from their own homes, lest their illness hinders their children’s marriage prospects or their grandchildren’s school admissions.
There are no reliable estimates as to how many people in India are afflicted with leprosy. In the fiscal year 2012, according to the government’s figures, there were just over 135,000 fresh cases detected, which would mean about half of the world’s total. Even these estimates look too rosy, however. They would suggest that in at least 12 Indian states children constitute only a tenth of all new cases, which is medically implausible.
The undercounting reflects a dangerous form of neglect. By 2005 India had all but declared victory in its battle against the disease, reporting that it had fewer than one case of leprosy per 10,000 people. “It was a mistake,” admits Pradip Gaikwad, a doctor who retired last year as a joint director of Maharashtra’s leprosy programme, which has recorded the third-highest number of cases, after the programmes of Uttar Pradesh and Bihar. After that spell of false relief, other diseases took priority in public-health circles; door-to-door visits in remote villages were called off; and medical staff were reassigned. With villagers having to report themselves at clinics on a voluntary basis, new cases of leprosy went under-reported. While the MDT medicines needed to cure it are supposed to be supplied free of cost and made abundantly available, their distribution has been disorderly and uneven.
It is a special shame for those resources to be misplaced, for this is a disease with a reputation for misdiagnosis. Leprosy attacks the nerves and skin, leaving behind scaly scabs. Thus it masquerades as any number of simpler skin disorders. As medical colleges seldom stock infected skin smears, which students might use to recognise the disease, most doctors aren’t qualified to spot it. When its first symptoms are untreated, the victims’ muscles atrophy.
Ideally sufferers should be diagnosed early, treated with medicines, provided surgery when it is necessary, and eventually brought back into society. At the moment however every stage of this process is broken. Post-treatment care is scarce, too—and important. At Anandwan’s hospital, a sallow-faced lady in her 60s shows her clawed fingers, which have been serrated by burns. She is insensitive to pain in her hands; as with many patients, she has forever lost the sense of touch in her affected areas. People suffering from leprosy are often injured by such household chores as holding cups of tea, or chopping vegetables.
Not all is gloom though. In 2012 Maharashtra’s government, for the first time since 1994, hiked the per-patient allowance to sanatoriums. Thirty million Maharashtrians were surveyed for the disease—and about 2,000 tested positive. In slums where people who have been afflicted with leprosy converge, former patients are being recruited to help treat current sufferers. In some places they dress the wounds of about 50 patients a day in exchange for 1,000 rupees ($16) per month. In the draft for the national government’s twelfth five-year plan, the health ministry has proposed to set aside 7.9 billion rupees ($130m) in the quest to rid the scourge.
The long delay between the onset of leprosy and its first signs poses a major challenge in the eradication of the disease. In September 2013 a team of Indian and German scientists led by Thirumalaisamy Velavan announced the discovery of genetic variations among Indian leprosy patients, which suggest that some families and communities are especially susceptible to the threat posed by Mycobacterium leprae. That should make it easier to provide early diagnoses. Together, smarter spending and scientific advances represent a start towards dealing better with India’s leprosy problem.
And while the stigma that is associated with the disease is formidable, Anandwan offers hope there too. Every day the neighbouring towns buy 850 litres of milk from its dairy, which is run by cured leprosy patients who tend the cattle. “Give them a chance, not charity” reads a banner in their auditorium, where an orchestra troupe practices Bollywood numbers for its next gig. But Sheetal Amte, a granddaughter of Anandwan’s founder and now the colony’s chief development officer, sees no time to rest. In her view “Anandwan should not exist”: it should not be necessary. The fact that it is shows how badly the wider society needs its help. “Our work has just begun”.
