In order to tackle leprosy, there is no getting around the issue of stigma.
During the Goodwill Ambassador’s recent visit to Gorontalo Province in Indonesia (see Ambassador’s Journal), we asked Dr. Irma Cahyani Ranti of the provincial health department about the leprosy situation in a province where the disease still presents challenges.
Not all villages have been the subject of active case detection. This means there is the possibility of continued disease transmission as a result of undiagnosed cases.
Then there is the issue of stigma, which hampers passive case-finding. This stigma comes from within individuals who have leprosy but also from people in the community who still discriminate against leprosy patients. When someone has leprosy, they are embarrassed to seek help; at the same time, they are fearful that their status will become known to the community. Stigma also comes from health workers.
Still another challenge is funding. We need to ensure the sustainability of the leprosy program so that efforts for prevention and control can continue until leprosy can really be eliminated.
To improve understanding and awareness, we provide information about signs and symptoms and encourage people to immediately visit a health center if they suspect they might have the disease. We emphasize that leprosy is curable and that the medicine is available for free at government healthcare facilities, but that if detection and treatment are delayed, this can lead to irreversible disabilities. We stress that while the disease is contagious, it does not spread easily.
We also provide information to leprosy patients and their families via SMS using our Mobile Leprosy (MLep) program.*
We need to do a number of things: build the commitment of all stakeholders to work together to achieve elimination; increase early case detection across villages; have schools carry out case-finding among pupils; treat all confirmed cases using the standard regimen and make sure that MDT is always available; ensure the sustainability of funding for case-detection activities and case management; and empower people who have experienced leprosy to eliminate stigma from the community.
They can motivate others to seek treatment and help the community understand that they are just as capable of working as people who have not had the disease. Plus, they can motivate health workers to be more enthusiastic about their role of finding and treating cases.
Dr. Irma Cahyani Ranti is Head of Prevention and Control, Communicable Diseases Section, Gorontalo Provincial Health Department, Indonesia.
* A project of Netherlands Leprosy Relief to increase effective disease self management by persons affected by leprosy and increase disability prevention by health workers, using text messaging. It is currently in effect in Gorontalo and Banten provinces.