India fails the leprosy test
The World Health Organization [WHO] has reported that in 2015 India accounted for 212,000, or 60%, of all the new cases of leprosy reported world-wide. So, the foolish boast that India has eradicated leprosy is shown to be a falsehood. As the WHO has pointed out, and is well-known to the medical fraternity, medicines and treatments are available to eradicate this ancient dreadful disease, but political will has been lacking for a very long time.
Since the dawn of history, people suffering from leprosy have been shunned, in India as much as in Europe. In medieval Europe they had to wear a mask and toll a bell to warn everyone else. In India, they are evicted from their families and villages, and they form lonely communities of their own, which increases the problem of treatment.
The great Dutch medical scientist Dr. LM Hogerzeil researched this disease at the old Nizamabad centre set up years ago by the Nizam in Telangana. He lived and worked in primitive circumstances, helped by Dutch students, and I remember his telling me about an encounter with a long cobra in his room. Hogerzeil’s work showed that some people are genetically prone to catch the disease through respiratory infection, by a cough or sneeze from a newly infected person. He also found a curious fact, that there were many more cases of people getting infected in the eastern Deccan, while there were relatively few cases in the western half.
Hogerzeil established through his work in India and Nigeria that a heavy dose of Refampicin over just a few days can stop a patient from being infectious, though he or she may carry the disease for a longer time. This finding was corroborated in Hyderabad at that time by the famous Dr. Pearson, who had a long and respected clinical experience in treating the disease. Unfortunately, around forty years ago, when Refampicin came on the market it was a very expensive drug, not affordable by leprosy patients who almost all were the poorest of the poor. Ciba-Geigy which held the patent in those days refused permission to have it manufactured in India, though the profits it earned from the drug was a very small fraction of the total.
In contrast, I must point out the generosity of Irish doctors, who freely gave permission for the formulation in India of Clofazamine, a second-rung drug, developed by Dr. Vincent Berry of the Irish Medical Research Council, at Trinity College, Dublin. Clofazamine was never really popular among patients or doctors because it caused discoloration of the skin.
Dapsone is the first rung drug to treat the disease and is supposedly supplied free to patients. The problem always has been how leprosy patients are treated at government medical facilities, from Primary Health Centres to district hospitals. The poor are always shouted at and many times abused, leprosy patients even more so. So they hesitate to visit hospitals, afraid they may be forcibly incarcerated for treatment. They do not take a Dapsone tablet everyday as they should, and the disease develops resistance to the drug, necessitating a more powerful drug which usually is beyond the reach of the poor. Humane and sympathetic treatment of such patients would enable complete identification of all sufferers and regular treatment, which could eradicate this scourge in short order, but the governmental will to do so is not there.
Sometimes the interests of the powerful can aid the disease rather than block it, as I observed in the following incident. Telangana is a leprosy hot spot, and forty years ago Dr. Jaiphal Christian ran an excellent leprosy treatment centre, at Zaheerabad, Medak District, which had been founded by his father, a pioneer in leprosy treatment.
Dr. Christian went the extra mile by providing his treated patients with a rural livelihood, rearing goats and growing crops. Despite disfigurement, these former patients were non-infectious and the doctor tried to break fear of the disease in rural communities. I myself used to visit the hospital with my only little daughter, who played with the patients and was carried around by them in complete safety.
Unfortunately, Padmaja Naidu, the daughter of the famous poet, Sarojini Naidu, left a small sum of money for the hospital. Since Mrs. Indira Gandhi was one of her trustees, that trust had immense political authority, and its managers tried to get hold of the hospital, not out of any interest in curing the disease, but possibly to acquire the land of the hospital. After fruitless negotiations, poor Dr. Jaiphal Christian had to close down the hospital which had served leprosy patients for so many decades. If the rulers of India have no interest in eradicating leprosy, they should at least refrain from impeding the treatment of patients.
(The writer is a well-known author, economist, and a renowned rights activist. He is on the jury to select Alternate Nobel Prize)