While Delhi claims to have registered a significant reduction in the number of leprosy cases, so much so that the State Government is looking at “dismantling” the only government established complex for leprosy patients at Tahirpur in North-East Delhi, social stigma continues to be a bane for those associated with the disease.
According to Delhi State Leprosy Officer K. S. Baghotia, as per the last tally (conducted in December 2012) Delhi has 1,357 people under treatment of whom 69 are children. “We also have 1,584 people under treatment from the neighbouring States and 20 cases from outside India, of whom 19 are from Nepal. Delhi also gets cases from Bangladesh and Sri Lanka.”
Dr. Baghotia insists that most of these leprosy patients, due to a variety of reasons, have confined themselves to “isolated pockets” in the city -- the biggest among these being at Tahirpur. “This is the only leprosy complex that was established by the government several decades ago but because of the fall in number of cases it is no longer serving its objective.”
“While the Tahirpur complex has 29 colonies, there are six other unauthorised, self-established leprosy colonies across Delhi such as in Andrew Ganj, R. K. Puram, Tilak Nagar and Shalimar Bagh. The State Health Department extends care and medical support to leprosy-affected patients at all these places and even has a special unit which makes shoes for those affected by leprosy.”
Dr. Baghotia adds that after 1992 there has been a steady decline in the number of leprosy cases, “but new cases of children are still being reported from North-East Delhi and South Delhi. In almost all the cases where children are tested positive for leprosy, there are two common points: either there is disease in the family and/or proper hygiene is not being maintained.”
On a positive note, he says there are almost no cases of transmission from schools.
As for the medical care offered to those affected by leprosy, Dr. Baghotia says the treatment comes free of cost and can be availed of at any Delhi Government hospital. “Discrimination, however, remains the single biggest challenge in combating this disease,” admits Dr. Baghotia.
Seconding this, Delhi Social Welfare Minister Kiran Walia says: “Awareness is the key in this case and discrimination continues to be a main cause of concern for leprosy patients. Though the government is working towards creating adequate awareness about the disease and the fact that it is completely curable, there are definitely a lot of myths and fears that make the process of acceptance of a cured leprosy patient an uphill task.”
And it is this prejudice against the disease that is now forcing youngsters (most of them with no history of leprosy) to speak up against the stigma attached to it.
Lakshmi (who is married into one of the colonies in Tahirpur complex) is one such voice. “I am from Odisha and come from a leprosy colony there. It is virtually impossible for a youngster to get out of this circle of not being accepted back in society. It is especially true in case the family is economically weak. Most of the youngsters here are exposed to ‘illegal’ activities and don’t get much of a chance to get out of the place.”
She laments that “the stigma attached to leprosy is so great that there is no acceptance in society. Lack of proper educational facilities make the situation worse. Without proper education youngsters often get into petty crime. Only very determined youngsters are able to escape this vicious circle. It is a problem that we are seriously concerned about even for our children.”
Manoj Varghese, a social activist who had been working in the field of leprosy elimination, too acknowledges that a major problem still remains.
“Though several government and non-government institutions are doing good work in these colonies, these units have unfortunately become the hub of several illegal activities and smuggling. Owing to the fear and stigma even the cops do not enter these areas and leprosy patients are hardly booked for crimes. This is the ugly other side of the story.”
Mr. Varghese says that it is disturbing that while over 10,000 people reside in these colonies, the criminals there remain shielded as they also serve as “vote bank” to politicians.