Buruli the flesh-wasting disease: despite the increasing prevalence and morbidity of Buruli Ulcer in Cote d'Ivoire, a large section of the population remains ignorant of its existence. Josephine Akarue finds out why.
For Teihy Richard, one of the 130 inmates of this Catholic-run centre, life may never be the same again. At 11, he struggles to come to terms with what started as a painless inflammation of the legs. He realises that unless he gets the necessary assistance, school and the dream to drive a car when he grows up may just be that: a dream. In place of football and maths, the former fourth grader has to learn to walk and contend with the trauma and stigmatisation of Buruli ulcer.
Like him, the 30-year-old Anderson Noussoa first experienced a painless inflammation of the right leg. It was not until he had made the rounds of several traditional healers, that in 2003 it finally hit him that he had Buruli ulcer. This hotelier turned farmer only started walking again this year. Still, as he sits in a wheelchair recuperating from his leg surgery, his principal concern is the fate of his family. "It hurts sometimes when I think about it," he says. "Without this centre, we'll all be dead."
Perhaps not. Alongside government hospitals, the Saint Padre Pio Centre is just one of several privately-run centres in the country treating the disease. Yet, Noussoa's lament captures the fears of a growing number of people trapped in the body of a wasting disease that attracts little media or public attention.
Professor Henri Asse, a plastic surgeon and national coordinator for Buruli ulcer treatment in Cote d'Ivoire, attributes the non-existence of current statistics on the disease to inaccessibility to rebel-controlled areas. "I'm aware that there's an increase in the prevalence," he says, "but we don't have precise figures. There are some endemic areas we cannot visit such as Bouake, Man and Danane."
Previous records, however, show a steady growth from two official cases reported in 1982 to 5,000 by 1995. In 1997, the reported cases hit 11,000. Curiously, the name Buruli comes from one of the counties in Uganda where the ulcer was first diagnosed. Today, Cote d'Ivoire, with an estimated 15 million population, has about 22,000 cases of Buruli ulcer, making it the world's highest endemic nation.
Even then, Julien Ake, doctor and national director of MAP International (West Africa), believes this figure is grossly underestimated. "Since not all endemic areas have sanitary centres," he says, "the official figure does not portray the reality."
In addition, he says, in Taabo, (population 36,665) where MAP carried out a pilot research, 245 new cases were found between 2005 and 2006. This implies an incidence rate of 6.65%. The reality could be even more alarming.
Yet, few know the disease. Fewer still know its real name. Some call it la plaie de Daloua, the Daloua wound. Others call it la plaie de la sorciere, the sorcerer's wound. For the vast majority of the rural population, it is simply the flesh-wasting disease. Consequently, victims are either ostracised or ignored. Sometimes, families break up and mothers are forced to pack out with the affected children. Today, an estimated 70% of cases are children under 15.
Medical research reveals that after tuberculosis and leprosy, it is the most common mycobacterium causing ulcers in humans. Still, what raises the most concern to date is that the exact mode of transmission eludes even the experts. Most vulnerable are populations in endemic areas along rivers and places of stagnant waters. In addition, environmental changes triggered by irrigation systems and construction of dams are also known to be causative factors.
Recent research associates its transmission with acquatic insects. Injuries to contaminated skin sites provide vulnerable entry points for the organism. Once introduced into the tissue of a victim, the bacteria multiply and elaborate a toxin with attraction for fat cells. This affinity creates a conducive environment for proliferation.
At this phase, the body's immune system shows little or no response and the Buruli skin test may be negative. This explains the large percentage of unreported cases until they get critical. In extreme cases, the bacteria spread from the surface to joint tissues or bone cells. Although rarely recommended, amputation of the affected limbs may be inevitable at this stage. Other complications include deformities of the affected parts.
The critical question is why has it remained in the shadows for so long? Jean-Marie Kanga, dermatologist and former national coordinator for Buruli ulcer control in Cote d'Ivoire, proffers some key reasons: Unlike malaria, it has low mortality and spread. It has no local name for easy identification and became known only in the early 80s. These reasons hardly address the problem. This, he attributes to weak funding. Kanga says that during his tenure, while the cost of treatment and sensitisation averaged CFA8bn annually, the government's budget was CFA400m. Even this figure did not translate into cash. This includes medication through government pharmacies. "To make up for the difference," he says, "we worked with the WHO and other NGOs like ANES-VAD, the Spanish NGO."
While the WHO provided financial aid, ANESVAD donated a four-wheel drive vehicle for carrying out early warning sensitisation. The WHO also trained field officers as community health agents. Yet, Kanga expresses fears: "Unless we get more financial help in this area, I don't have much hope for the sensitisation programme."
Prof Henri Asse, the national director for Buruli ulcer treatment, admits he is aware of the inadequate public information on the disease. Still, since he assumed office in March this year, it has not been an easy ride either. To date, there is no office building for Buruli ulcer in the country.
According to Ake, MAP has within the last year trained 24 community health agents, provided flip charts for public awareness and medications for treatment centres. It has also constructed two surgical blocks in the government-owned Centre Hospitalier at Treichville and the General Hospital at Taabo. But these are not a substitute for an early warning and sensitisation plan.
Beyond the cash squeeze, another factor that has hampered control of the disease in the country, is political instability. Within the last five years, the Health Ministry has seen three different ministers who have each chosen a different candidate for the Buruli ulcer programme. The lack of continuity has become a hindrance as each coordinator has approached the control programme differently.
Ignorance and the high cost of treatment have also constituted another impediment. A vast majority of the public is unaware of the fact that like leprosy, the government provides the full cost of treatment. In a country with high unemployment and no social security, many victims resort to home-based treatment or self-medication.
The average cost of surgical intervention per person stands at CFA450,000 (US$850). Recurrence rate after surgery remains as high as 16 to 28%. Although other treatment forms exist, the WHO considers the heat and hyperbolic oxygen treatment impractical and unproven in developing countries.
But at the Padre Pio Centre, some experts believe there are less costly methods. These include green clay and ozone therapy. The first involves the use of green clay to extract toxin from infected areas. Changed regularly, this produces clean healing with no adverse side effects or complicated scars. Although research is still ongoing to determine the extent of its efficacy, Prof Asse remains sceptical. "It's a case of integrity. We have ethics," he says. "Just because this is Africa does not mean that proper scientific procedures should be ignored."
Jerome Son, a medical researcher, believes there is sufficient scientific evidence to prove the efficiency of green clay. "There's hope in green clay therapy, but it's a new product and we need diplomacy to approach it gradually."
Euloge Ekaza, a molecular biologist at the Institut Pasteur (Abidjan), shares Son's optimism. "So far, we have discovered that green clay therapy is efficient. Our goal is to find a method of treatment that is both affordable and efficient for victims."
For now, however, the war of words has taken a backseat. All stakeholders seem eager to find a lasting solution to the treatment of the ulcer. Until that is done, the pathos in Assah's voice will continue to ring loud: "Imagine a child handicapped for life because of this ailment when it could easily have been treated." Certainly, this is one message no one can afford to ignore. The question is, does the public know?
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|Title Annotation:||Saint Padre Pio Centre|
|Date:||Mar 1, 2007|
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