"Arguably, anthropological and environmental aspects of Mycobacterium ulcerans infection, usually referred to as Buruli ulcer, are the two most important factors in better understanding of this mysterious disease", said Professor Françoise Portaels of the Institute of Tropical Medicine in Antwerp, Belgium, in her presentation at the 3rd WHO Ad Hoc Advisory Group meeting on Buruli ulcer held in Geneva 1 – 3 March 2000.
"While people in remote rural areas of the tropical belt get infected due to close proximity to shallow stagnant muddy waters, home of the microorganism causing this crippling disease, ingrained cultural beliefs prevent them from seeking medical assistance outside local traditional healers. Many believe that the disease is a curse sent on them"
Although called an emerging disease, Buruli ulcer is hardly "a new kid on the medical block". Back in 1897, Sir Alfred Cook described cases consistent with Buruli ulcer that he came across in the Buruli area in Uganda. After that, the disease was forgotten for half a century. It was in 1948 that the first case study was published in Australia. The World Health Organization began to address Buruli ulcer as a public health problem in 1998.
A disease of the poor, Buruli ulcer managed to stay out of the spotlight of the research community to such an extent that even today no one knows the exact mode of transmission and there is no progress in developing simple diagnostic tools for detecting the presence of infection. Scientists and health workers have borrowed a technique used for tuberculosis and leprosy but it is 50% accurate at best. There is still no effective drug treatment and no vaccine for the disease. Incubation period is anywhere between two months and several years. Nearly 70% of cases are in children under 15 years of age.
Skin contamination is universally believed to be the route of infection. Any minor penetrating injury serves as a gateway. There is no evidence to date to suggest person to person transmission. What starts as a painless swelling in the skin often develops into grossly deforming ulcers. Unlike other mycobacteria, Mycobacterium ulcerans produces a toxin that destroys tissue and bone and suppresses the immune system.
Over the last thirty years, scientists studied slugs, fish, snakes, grasses and soil for signs of the natural habitat of the microorganism. Eventually, it was found on certain water insects on the roots of aquatic plants. But the actual mode of transmission remains as elusive as it was back in 1897.
Since a new system for recording and reporting cases of Buruli ulcer has just started, it is difficult to assess the burden of disease at global and national levels. "There is a huge under-reporting of the incidence of Buruli ulcer,"explains Dr Mario Raviglione of WHO's Communicable Diseases Programme. "Awareness of the disease is generally low in the medical community and the general public alike. Health workers have not been trained in the recognition and management of the disease. In most areas where the disease occurs, health services are poorly developed, especially the surgical services and laboratory support".
Sister Julia Aguiar, member of the WHO Advisory Group, runs a hospital at a Catholic Mission in Zangnanado in Benin in West Africa. Having successfully treated over two thousand patients, she maintains that for the time being the treatment will have to remain surgical including skin grafts. "We are getting more and more patients every year. People hear about our facility, the rate of success, low admission fees and less than 40 days hospitalization. Sadly, most of them come with a fully developed disease." This observation is confirmed by the national statistics. The situation is similar in other West African countries and in Papua New Guinea.
Patients are hospitalized on average for three months but in some cases it can take up to 18 months. Usually, a member of the family stays with them full time. In Ghana, the average cost of treatment is the equivalent of US$ 780. In Cote d'Ivoire it is twice as much. These costs are way beyond the means of those affected. "The challenge is to develop simple, inexpensive and reliable diagnostic tools that can be used in remote areas to help health workers to detect the presence of infection before the disease sets in," says Dr Kingsley Asiedu, in charge of the WHO Buluri ulcer Programme.
With an escalating number of cases and associated complications, the socio-economic impact on the rural economy can be devastating. In 1998, WHO responded to the growing spread and burden of the disease by establishing the Global Buruli Ulcer Initiative with the aim of raising awareness about the disease, mobilizing support to assist endemic countries, promoting and coordinating scientific research and bringing together all interested parties. The Initiative has so far focused on three countries in West Africa: Benin, Cote d'Ivoire and Ghana. Though the heaviest burden is in West Africa, cases are now being reported in other parts of Africa, the Americas, Asia and the Western Pacific region.
Several priority areas of work were defined at the meeting of the WHO Advisory Group on Buruli ulcer. Among those are:
- strategic planning for social mobilization and global advocacy.
The first monograph on Buruli ulcer has just been published by WHO. The bookprovides the first comprehensive report on all aspects of the disease.
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