The St. Francis Buluba Leprosy Centre is the only home Mr Nerico Mukama knows. It is where he went after he lost both of his parents in the 1950s. The facility diagnosed the little-known disease that had taken over his body.
“I was in a poor state, with sores all over my hands and feet,” he says. “But because there was no medication for leprosy, the doctor just had to amputate me.”
Leprosy treatment in Uganda has made leaps and bounds since, but awareness of the disease remains comparatively low. With 340 newly-registered cases to the Ministry of Health last year, it affects few enough people in the country that it is not generally considered a major health concern.
A rare success story
Uganda’s success in controlling the disease has been largely due to a group of specialised individuals that have worked for decades with minimal government support. The country’s leading expert, Dr Joseph Kawuma, is both the medical advisor of the German Leprosy and TB Relief Association – the main provider of funds for treating the disease – as well as chair of the World Health Organisation technical advisory group for leprosy.
Dr Kawuma says the continuous and countrywide leprosy programme started by missionaries in the early 1930s was later passed on to a dedicated staff of local health workers more than two decades later. “They were there all the time,” Dr Kawuma says. “Even during the time of Idi Amin the leprosy programme somehow continued. Even when we had the rebel troubles in the north, in those places the leprosy programme still somehow dragged on.”
Leprosy control has been a domain of church-based organisations for a long time, who took it on as a humanitarian Christian mission. There is still a higher prevalence in the north and northwest, due to weaker programmes in the face of the past conflicts there. But Dr Kawuma says the fact those regions have not reached the much higher numbers that can be seen in the Democratic Republic of Congo and Tanzania again speaks to the strength of Uganda’s programme.
The speciality of the programme’s staff cannot be replaced, he says. This particular cadre were trained as young health professionals for two years to recognise and treat leprosy patients, even providing follow up home visits.
Now, 60 years later, many of these original workers have retired, or are on their way out of the profession.
“There is a scare that a large number of the people who had the specialist training to cater for leprosy patients are retired,” Dr Kawuma says.
“The care is (now) integrated into the primary healthcare system – which is not very strong for any other thing, let alone for leprosy. It is not well-prepared to cope with the remaining cases and the challenge to see how to care properly,” he says.
The Deputy Permanent Secretary for the health ministry, Dr Asuman Lukwago, says leprosy is already being integrated into training the country’s next generation of health workers. He also said in February 2011, a World Bank-funded project was launched to address wider problems in the system, such as procurement of drugs. But Dr Kawuma says the danger here is sweeping Uganda’s leprosy success story into a pile with the rest of the system’s failures.
Uganda achieved the World Health Organisation (WHO) target rate of only one person per 10,000 infected with leprosy in 1994. However, some districts have continued to report more cases than the set targets for elimination.
Along with a lack of speciality, he says the professionals of the past were unique for being in place across the country – health workers today are notoriously uninterested in being placed in rural areas.
Leprosy is an infectious disease that can be traced back to biblical times. It affects the skin and nerves, and left untreated, extended sensory loss can result into the loss of limbs after repeated injuries occur. Caused by the bacteria, the disease has a long incubation period – years can pass before any symptoms are displayed. When they do, it presents in various forms – usually beginning with discoloured patches on the skin, which can progress to swelling and boils. “It’s a slow, progressive disease,” says Dr Elizabeth Nionzima, the medical superintendent at St Francis Buluba Hospital.
The main referral hospital for leprosy, St. Francis has seen most of the country’s affected patients since it started in 1934 by Mother Kevin of the Franciscan Missionary Sisters for Africa. The Franciscan Missionary Sisters later handed over the facility to Jinja Diocese, which delegated its management to the Little Sisters of St. Francis.
It is also home to 19 in-patients that live there permanently, including Mr Mukama. Many of the patients come from the Busoga region. “People out there do not like lepers. They think that the leper will pass on the infection to them,” Mr Mukama says. He says after a short sojourn back to his community after he was originally treated in the 1950s, he quickly returned to the centre. “I came back here and I will be buried here,” he says. “No one wants to associate with me simply because I am a leper. Yet here, the doctors take good care of me when I fall sick, they bathe me, and there is always someone to bring me food.” Mr Mukama says more people need to know that leprosy is curable, and not easily caught.
Dr Nionzima agrees. “There are people who have lived here for more than 30 years and they have treated leprosy patients and they don’t have leprosy,” she says. “It’s about immunity and hygiene – it’s a disease of poverty.” Though treatments have been available at St. Francis since the 1950s, the WHO-sponsored Multi-Drug Treatment made widely popular in the 1970s is attributed to a 90 per cent worldwide decline in cases over the past two decades.
Dr Frank Mugabe, a medical officer with the National Leprosy and Tuberculosis Programme, says Uganda’s achievement of the WHO target elimination level implies the numbers remain stable. Only six countries remain to meet the elimination at a national level.
Yet Dr Kawuma describes the low numbers in Uganda over the past three years as “stagnant”. Uganda reported 340 new cases in 2008, 350 in 2009 and 340 again in 2010.“We don’t seem to be able to go much lower than that,” Dr Kawuma says. “There is a risk if we wait and stop what is going on now. Then we would see an upsurge – in about 20 years, leprosy cases would start going up again.”
Dr Kawuma also says there is more to be done for leprosy to ultimately be wiped out completely. “On the large scale, there has to be a way of diagnosing infection before it turns into a disease, which we don’t have now,” he said. “The whole world is wondering whether there is probably something we don’t understand about the transmission of leprosy.”