A view from the front line of leprosy control in India.
A District Leprosy Officer (DLO) shoulders a heavy responsibility for carrying out the Indian government's National Leprosy Eradication Program. Dr. Laxman Karmi is DLO of Jharsuguda district in Orissa state. He describes the job, the challenges he faces and what motivates him.
The DLO is the head of leprosy work in his district. But he is hampered by the fact that in many districts he is the only person responsible for the National Leprosy Eradication Program (NLEP) , helped by a few paramedical workers and non-medical supervisors. Previously, there were a medical officer and a leprosy eradication unit in addition to a DLO, but that changed with the integration of leprosy services into the general healthcare system.
Because the vertical structure of the NLEP has been abolished and the program has been integrated into the general healthcare system, there is too much pressure on the DLO to achieve and sustain district-level elimination. Before, NLEP staff were directly accountable for leprosy work; now, the general healthcare system has to carry out this job alongside other huge, priority-based government programs such as JSY*, malaria, TB and HIV/AIDS. This makes it very difficult to get the work done. We have built the capacity of general healthcare staff to carry out case detection and case management, but the problem is sparing the time to do so. In a general sense, leprosy work has been diluted with other programs.
A target set by officials at the top, to be executed by field workers, is meaningless and non-practicable. It should be drawn up by the lowest-level workers, in consultation with the community. We should always try and do what the community needs.
Now almost all people are aware of the symptoms of leprosy, know that treatment is available and that the disease is curable. There may be some hidden cases, but not that many, I believe. With regard to stigma, I would say it has decreased by 90%. However, it still exists in some locations, and may result in a person diagnosed with leprosy being forced out of his or her village.
Colonies are like non-healing ulcers in the district. On the other hand, we cannot simply ignore them. The people living in them are also human beings. We must do what we can to see that the children get educated, that young people find work and that we support the elderly. Looking at the situation from a human rights point of view, there needs to be an integrated approach. All government departments should be involved and the district administration needs to take the lead. It should not be up to the Chief District Medical Officer or the DLO to deal with every problem a colony faces.
The centers are important because colony residents do not have the time or the inclination to go to government health facilities. Their biggest concern is day-to-day living. Having a first-aid center within the colony means they can get the tablets or dressings they need at any time. What makes these centers distinctive is that they are run by colony residents; health workers only assist them.
Yes. They can be of immense help. The community is more accepting when they hear from someone who has personally experienced the disease. People affected can be involved in different ways - taking part in information, education and communication activities; playing a role in disability prevention and medical rehabilitation clinics held at block community health centers and primary health centers; participating in decision-making meetings at the health department, as stakeholders in the program; and performing services for colony residents, if some way can be found to compensate them for their efforts.
The first time I visited a colony, I stood at the entrance to get an overview. A young resident approached me. He was well educated, but had lost his fingers to the disease. He looked at me for some time and then asked, "Sir, why are you a doctor and why am I a leprosy patient staying in a colony?" His real question was, "Why had God done this? Was it associated with a curse?"
|At a colony first-aid center run by residents|
Another time, I had to validate a suspected case at a primary health center. Completing my exam, I told the man that he had leprosy, but that he would be 100% cured in six months with multidrug therapy. For five minutes he remained silent. Two tear drops rolled down his cheek. I could imagine the psychological change taking place in him on hearing he was suffering from leprosy. It was painful to watch.
Visiting a colony one day, I came upon a young woman who had received a marriage proposal. I asked her about the young man and she told me he was from another colony. "Why don't you marry someone from the mainstream and live in the community?" I asked her. Through tears, she replied, "Who will marry me?" Her words struck home and made me think, 'Who would I be able to convince to marry her?' "
The day will come when there are no more colonies, because the stigma of this disease is gradually disappearing. People now know that if leprosy is treated early, there will be no deformity. Deformity is the only thing that carries stigma, so if there is no deformity there will be no stigma. It is very clear that if the inflow of people into the colonies stops, then colonies will gradually disappear. But it will take time. And we could do more to sensitize the community in the meantime, so as to help stem this inflow.
With a reduction in prevalence below 1 case per 10,000 people, we are moving toward an atypical scenario. This will require greater awareness and sensitivity on the part of medical personnel to detect the disease. All should have knowledge of leprosy when examining a patient and keep in mind that he or she might have the disease.
As mentioned in the great Hindu epics Ramayana and Mahabharata, after death no material possessions accompany us - only the good works we have done during our tenure on this Earth. I am a believer in this dictum and it keeps me motivated all the time. Unlike other medical jobs, in this sector we are serving those who are truly deprived and upholding their human rights. If a DLO has carried out his duties sincerely, he will definitely feel he has done something for humanity.
Dr. Laxman Karmi joined the Leprosy Eradication Unit of Jharsuguda district, Orissa state, as Medical Officer in 2004. With the subsequent restructuring of Orissa's medical services and the integration of leprosy services into the general healthcare system, his post was upgraded to District Leprosy Officer. A surgeon, Dr. Karmi also carries out reconstructive surgery on people affected by leprosy.