What does it take to control neglected tropical diseases? Part Two: Controlling Buruli Ulcer

LW         By Linda Waldman

Picture the scene: Kwame, a young boy living in swampy Obom, appears to be fine, despite his swollen arm. The swelling is painless, so he and his family do not do anything about it. Within a short period, an ulcer develops; the skin at the edges is rotting and the wound seeps pus and smells putrid.

Still Kwame does not complain and his family does nothing, in part because he and his family live in a remote rural area far from a clinic; in part because he is not in any pain, in part because there is no money for transport to a clinic or for treatment; and, in part, because now there is a stigma attached to his wound he prefers to hide inside his home. Left without treatment, massive ulcers form on Kwame’s legs, with the bone being severely affected. He is left with severe scarring and a disability which inhibits his walking.

This is the effect of Buruli Ulcer.

“To be a Community Drug Distributer and to do the job of eradicating disease,” says Mr Stephen Sarkodie, “One must take time, have heart and be restless.” Stephen’s restlessness extended beyond the eradication of Guinea worm and turned to Buruli Ulcer.

Buruli Ulcer, which is caused by bacteria, is not yet eradicated in Ghana. Rather it has the status of a ‘controlled’ disease. Controlling refers to making sure that Buruli Ulcer no longer constitutes a major public health burden. Deliberate efforts are in place to ensure that the disease remains at an acceptable level, and continued interventions are required to ensure that this level is maintained.

While Buruli Ulcer seldom leads to death, disability is high. The disease progresses rapidly, but because it has immunosuppressive properties, there is no pain or fever.   There is however loss of physical health, loss of physical movement, loss of economic productivity and loss of respect or social status.

Scientists and researchers do not know how you contract Buruli ulcer and, as a result, there is no way to prevent the disease. Early case detection and treatment with antibiotics is thus the best treatment. However, for reasons described above, this seldom happens.

Political and media pressure to address Buruli Ulcer began in 1992 and, as a result, Ghana introduced a passive surveillance system for Buruli Ulcer the following year. Over the next five to six years, about 1200 cases were reported. Case searching for Buruli Ulcer began in 1999 and covered the whole of Ghana, seeking to investigate every single known village and community. Trained national facilitators in turn trained regional teams of local people who undertook the case search. Stephen Sekodie was part of this case reporting.

As a Community Drug Distributer, Stephen was responsible for 35 villages and he began with case searching and identifying areas where the bacteria were present. Three days a week, Stephen would leave his home and walk for many hours to a neighbouring village. Like other community health workers, Stephen relied on a WHO-produced pictorial document which demonstrated the different stages of Buruli ulcer. This he showed to the villagers, asking about similar cases in the community. Because there were no treatment centres in 1999, Stephen carried a treatment box with him.

“We didn’t know where the bacteria was coming from, but we saw that the Densu River basin villages were worse. We thought it was possibly coming from the river and so we taught people how to keep their environment clean and to boil their water. We also taught them to watch out for strange boils on their skin, and, if they saw one, not to delay and to go to the clinic.”

The case search showed that Buruli Ulcer had been grossly underreported, that the disease was more widespread than conventional wisdom had allowed for, and that far more people suffered from these ulcers than had been previously believed.

The case searching revealed a prevalence of 87.7 per 100,000 people. In 2008, the Obom Health Centre (situated in Obom, a suburb of Amasaman, in the Ga West municipality) recorded 41 cases. In 2009, there were 27 cases.

Today, Stephen claims, only 1 in a hundred people in the area around Obom Health Centre experience Buruli Ulcer disease. Stephen and his fellow Community Drug Distributers have helped control it through a combination of awareness, treatment and personal hygiene.

Today, few people suffer from Buruli Ulcer and those who do should know to access treatment quickly. In 2014, only 21 cases were diagnosed. Stephen’s work is his “service to my people, to my community”. His role as a community health worker undertaking the vital legwork to help Ghana control Buruli Ulcer is, however, just another step in the work of eradicating NTDs.

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