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Journalism of Courage
In 1921, when Padmashree Manohar Diwan decided to start the first asylum forleprosy patients in India at Dattapur near Wardha, he requested M.K. Gandhito open it. Gandhi told Diwan that he would be too pained at heart to do so;that, in fact, he would like to see it closed down as soon as possible.
Eighty years down the road, the stubborn stigma of leprosy has refused togo. Even as India gears up to make a last-ditch effort to achieve the goalof leprosy eradication in the grace period of five years – the actual targetwas the year 2000 – real eradication seems far off. Twenty years after thetarget was fixed, India continues to sit pretty at the top of the table with7 lakh patients (NGOs put the figure at 10 lakh).
“The first thing to realise would be that leprosy would never be totallyeradicated,” claims Dr Sadashiv Tare, an internationally acclaimed leprosyactivist who has been at it for 44 years. There are medical and non-medicalreasons for this, he says: “Firstly, medical science still knows littleabout how leprosy actually spreads. Secondly, the disease has an incubationperiod of 5 to 10 years. So, by 2005, it won’t be possible to know severalprobable patients. Thirdly, the extremely effective Multi Drug Therapy (MDT)will help you cure the disease but not prevent it. And lastly, even the newvaccine developed last year has been found to be effective only on 65percent of patients. The second generation vaccine would not be availablebefore another 20 years.”
Tare alleges that the World Health Organisation and Indian government havemade “unscientific compromises” that have led to under-reporting of cases.
“It has been an undeclared policy of the two agencies to discouragedetection and registration of new patients in this race against time.
Patients are doled out MDT medicines and asked to consume the course in sixmonths. If they do that, they are supposed to take it for granted that theyhave been cured,” says Tare, who retired as director of the Gandhi MemorialLeprosy Foundation in 1996.
“Invariably, many of these patients cannot maintain the medicationdiscipline and hence come back to clinics after six months. If the samepatient returns with a relapse, he is registered as a new patient,” Tareadds. Plus, the survey is carried out once in five years when it should beactually be done on a yearly basis.
Experts also say there’s a wide gap between the figures worked out by theNational Sample Survey and the World Bank independent assessment teams andthe District Leprosy Officer (DLO) on the other. The DLO figures are foundto be only one-third of the actual figures of leprosy prevalence. A study of400 districts under MDT for ten years has shown the number of new cases peryear to be a constant – hovering around a staggering 4.5 to 5 lakh. Anotherfallout of declaration of eradication would be stoppage of funds to leprosyNGOs. As it is, only a third of 75 active NGOs are getting governmentgrants. The axe will naturally fall on the thousands of doctors and healthworkers who have played a major part in the leprosy movement all theseyears, and those whose livelihood depends on the survival of theseagencies.The leprosy eradication scene thus poses more questions thananswers. No doubt, there have been achievements: most significantly, leprosyprevalence has gone down by about 85 per cent. Treatment of leprosy patientsis now also being done at PHCs. Earlier, patients would have to approachspecial leprosy clinics since doctors at PHCs would refuse to treat them forfear of being ostracised.
Leprosy asylums in the country will eventually down their shutters, sincethere won’t be any need to rehabilitate the leprosy patients there. And theday the last of such asylums go, Gandhi’s dream would have been fulfilled.
Before the government prepares to launch with fanfare the valedictoryfunction of the National Leprosy Eradication Programme four years from now,it will have to come out with satisfactory answers to these posers. Else,like malaria and TB, leprosy too will stage a comeback with a vengeance.
