“This presentation just failed to discuss the real issues that face leprosy,” Shobha Arole remarked after one of the trainees had finished making her 20-minute presentation on leprosy. Her presentation was just like the three presented the day before – very dry, clinically-based and made for presentation in a hospital. The presentations focused on the signs and symptoms of disease, the treatment, the different classifications (of leprosy) and some barriers to prevention. However, as Shobha acknowledged afterwards, it completely failed to address the reality of leprosy in the village and the situation on the community level. It failed to be practical and address why the disease could not be eradicated in a village that has leprosy medications directly on hand. And finally, Shobha was worried that after one month of the training course we still viewed disease in the same diagnosis-then-treatment fashion.
Leprosy is defined by the bacterium Mycobacterium Leprae but it isn’t the bacterium that keeps the disease alive. Leprosy is kept alive and caused by stigma, by detrimental traditions, by shunning it out of the community. It is caused by lepers being forced to go to leper camps and leprosy-specific hospitals for treatment even though it is much less contagious than tuberculosis or the flu. The perception in the village is that leprosy is incurable, highly infectious and a ‘divine curse’ of the Gods. This understanding leads to a fear of the disease much out of proportion with what is reality. When a villager is found to have leprosy, they are immediately thrown out of the house by their family and shunned from the village by their community. They are now on their own for food, shelter and work. This behavior and tradition keeps leprosy stigmatized, keeps it mystified and leads to future leprosy patients not offering themselves for early diagnosis, only to be exposed when deformity occurs. In reality, though, leprosy can be detected from a simple pale patch on your back or forearm and controlled from this point so it never spreads to the rest of your body and creates deformities (which are not caused by leprosy but rather from misuse due to the leprosy-caused lack of sensation).
How can leprosy truly be cured in these villages? By removing the social factors that keep the disease alive. By destigmatizing the disease and showing that leprosy is a bacterial disease, not a deformity or curse. Efforts need to be made to bring lepers back into the community and incorporated into public life. Once this effort is made, it shows that these are normal villagers who were simply diagnosed for a bacterial infection too late. When the stigma is lessened, the fear of the disease is mollified and villagers will present with possible leprosy at the first sign of a discolored patch to then contain the disease so it never reaches disfigurement. This brings the disease to the open and allows for the possibility of treatment and village eradication, not the antibiotics. The antibiotics have been available for village-use for years, but it is the social determinants that perpetuate the disease, not the medical ones.
The trouble is that all too often we are taught to think of leprosy (and other diseases) by classifications, definitions, medications and treatment. However, in reality, this state of mind takes the focus of the disease away from the social factors, away from the true root causes and the stigma to only further alienate leprosy patients and assist in mystifying the disease as a medical rather than social problem.
In developing countries and among the uneducated population, the true disease is not a virus or a bacterium but rather the ignorance and lack of knowledge/understanding endemic in the community. The availability of medications is not the problem, it’s the social causes that are the problem, and that is what needs to be addressed to cure these diseases.
Doctor Arole often comments that if communities could treat the same disease hundreds of years ago (without drugs) better than we can now (with drugs), then we must not be addressing the necessary intervention. What I understand is that we need to treat the society, not the disease. If we address the social problems, then we cure the disease regardless of drug treatment. Medications are needed but only after behavior modification, which is often a response to societal over medical acceptance.
In some ways these social interventions are viewed as prevention, such as change in diet, spreading knowledge and encouraging safe behavior, but it should also be viewed as treatment. Rather than just treating the disease, though, we are treating the community.
Shobha’s comments helped me to focus my presentation on community involvement and on village-level specifics. Watershed development is not a disease but it certainly is related to health. I decided to do my presentation on watershed development because I knew absolutely nothing about it and have lived in urban settings my whole life. To the average rural villager, though, all your food comes from the farm and your diet is a direct reflection of the crops you and your community grow. So when Doctors Mabelle and Raj Arole went into the villages to educate people on nutrition, they soon realized that they could not give advice on nutrition when people don’t have nutritious food - and in some cases any food at all. Realizing that health and development are two sides of the same coin, they worked with the village to organize community groups that properly intervened in agricultural life and ensured both a higher production of crops and a higher equity of crop distribution.
They achieved both these goals by setting up the watershed development program to minimize ecological degradation and increase economic sustainability. Ecological degradation was solved with three major projects: minimizing soil erosion, properly managing and harvesting water, and increasing the vegetative cover. Economic sustainability was solved by: village-level watershed development committees, payment of workers with food rather than just money, and proper crop rotation to ensure, for example, that a ‘heavy water-needing crop’ was not grown in a low water field. The result of their effort is amazing as they have created a sustainable project that continues to bring benefits year-in and year-out, even in drought-laden years. If you are interested in learning more about the project then feel free to look at the two documents I attached to the email I sent out.
Also, to view the photos I uploaded, you can see them by clicking here.
1 comment:
The Bible tells us about the story of an Army commander, named Naaman, from Aram. He was a great man in the sight of his master and heavily regarded, because through him, the Lord had given victory to Aram. He was a valiant soldier, but he had leprosy.
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