Despite many challenges, Africa has made notable progress in the fight against leprosy, as an historic conference in Johannesburg found.

　

It was with a real sense of occasion that the African Leprosy Congress opened outside Johannesburg on January 31 for four days. Not since Cairo in 1938 had there been an ILA congress on African soil, so there was a lot of catching up to do.
　In her speech welcoming delegates, South Africa's health minister, Dr. Manto Tshabalala-Msimang, highlighted the great strides that have been made against leprosy in Africa and the rest of the world since that last meeting, saying, “We are especially proud that African researchers have played a leading role in developing new interventions against the disease.”

　

　Worldwide, some 14 million people have been cured of leprosy over the past two decades and the number of endemic countries reduced from 122 to nine ― six of them in Africa. These achievements have come about through collective action, said Dr. Asamoah Baah (Assistant Director-General, WHO) and the key to continued success is partnership, “There is no option but to work together,” he said. At the same time, he acknowledged that WHO had not always been a good partner ― “we have sometimes been part of the problem, not the solution” ― and that the world health body intended to learn from past mistakes.
　In a first for an ILA event of this kind, the opening day included a special session devoted to human rights ― giving the congress, in the words of session chairman Dr. P.K. Gopal (IDEA), “a human face.” The session included presentations by persons affected by leprosy from several countries, as well as Prof. Yozo Yokota (Member, UN Sub Commission on the Promotion and Protection of Human Rights). Prof. Yokota said the commission had been “embarrassingly slow” in taking up leprosy as a human rights problem but was now tackling the issue.

　

　

　Dr. Ji Baohong's state of the art lecture on the Chemotherapy of Leprosy the next day returned the congress to more familiar territory. Dr. Ji (Association Francaise Raoul Follereau) lamented the fact there were so few chemotherapy experts in the field and called for a new generation of MDT regimens to be developed to improve treatment outcomes. “The belief that the current regimen will suffice is short-sighted,” he warned, stating that it is not resistance proof and that certain patients require alternatives.
　Introducing the subject of community-based rehabilitation, Dr. Wim van Brakel (Royal Tropical Institute of the Netherlands) said there were an estimated 600 million people worldwide suffering from disabilities, of whom approximately 1.5 to 2 million were people with leprosy-related Grade II disability. Only a small percentage of these people have access to rehabilitation, he said.
　CBR is a strategy devised to increase that access. It is complementary with institution-based rehabilitation, multidisciplinary (“not medical”), participatory, and empowers people. “There is no one ‘method' of ‘doing' CBR,” said Dr. van Brakel.
　Empowering people was the theme of Jannine Ebenson (The Leprosy Mission, Nigeria) who spoke on the role of self-help groups in Nigeria. “The biggest resource in countries like Nigeria is not oil or money, but people,” she said. Small groups can become a powerful voice when confronting officialdom. “People who would have hidden their illness before are now going on national television, talking about the disease, and demanding their human rights,” she said.

　

A panel discussion hosted by IDEA focused on the issue of begging, with participants from several countries offering their views.
　In Nigeria, begging is rampant, said Alhaji Shehu Sarkin Fada (IDEA). “If you are found to have a leprosy patch, people believe you have only been created to beg.” Your family will isolate you, the government won't allow you to study or work, and people “will stay away from you as they would a lion in the bush,” he said. “But if we are given assistance we can change our life. We are human beings like anyone else. We are useful to the community.”
　Cresenciano T. Rosello (IDEA) recalled how pen-pal letter writing campaigns began on Culion Island in the Philippines after World War II, requesting assistance for the many orphaned children living in what was once the world's largest leprosy colony. Benefactors were forthcoming and conditions improved, encouraging others with more dubious claims to write as well. “Pen-pal letters became a cottage industry,” he said.
　Now a couple of projects are helping prevent a new generation from resorting to begging letters by making them self reliant and self sustaining. “We intend to produce an economic miracle, transforming people from recipients of aid to givers of aid,” he said.

　

　

Africa's remarkable progress, highlighted at the opening of the congress, was dealt with in more detail by Dr. Landry Bide (Regional Advisor, WHO/AFRO) in his state of the art lecture on Leprosy Elimination in Africa. In the 1980s, he said, there were over 1 million cases of leprosy in Africa alone. It was a serious problem, poorly managed. In 1990, 42 out of the 46 states comprising the WHO Africa Region were endemic, and the prevalence rate was above 1% of the population.
　All that changed with the introduction of free treatment with MDT and the formation of national programs in every country, giving leprosy a new priority within the health sector. “It ceased to be a charity activity and began to be a policy,” he said.
　Africa still grapples with some special problems, including those relating to geographical access (the size of the continent and difficulty of reaching people), cultural access (illiteracy, taboos and poor communication between different groups), financial access (low income levels and largely absent health insurance), and functional access (decrepit health facilities, lack of trained health workers).
　Above all, said Dr. Bide, the main constraint is war, which “destroys health facilities, scares off health workers and displaces populations.”
　The symposium on Reaching the Unreached, moderated by Dr. K. Kawuma, noted that the bedrock of the leprosy elimination strategy was early detection and prompt treatment. Nonetheless, each year, new cases are occurring that are not being detected. Why? The answers, he suggested, included ignorance of the disease among both patient and healthcare worker (“some people look and do not see”), problems of distance and cost, and the matter of the diagnosis being “unwelcome.”
　Dr. B. F. Njako (GLRA/NTLP) speaking of Tanzania's experience, said that health workers can't do everything, especially with the increasing demands made on them by TB and HIV/AIDS, and that it was essential to have greater community involvement in uncovering leprosy cases.
　In the Democratic Republic of Congo, war has been a major contributor to poor infrastructure, said Dr. J.N. Mputu (Ministry of Health, DRC). Many health districts are not functional, and there is almost no community involvement, especially at village level, in leprosy detection activities. Volunteers were needed, they needed to be chosen by the local community, and they needed to be remunerated, he said.
　In the last state of the art lecture, on Prevention of Disability in Leprosy-Affected Persons, Dr. H. Srinivasan said that while leprosy is no longer a medical problem or (in most countries) a public health problem, the “human problem” of leprosy continues because of impairment, which can lead to marginalization and social isolation.
　Disability can occur even after a successful course of MDT, he said, but action can be taken to stop it from happening, and he called on persons affected by leprosy to become the “main actors” in practicing disability prevention.

　

　

Community-based rehabilitation is a strategy within community development for the rehabilitation, equalization of opportunities, and social integration of all people with disabilities. It is implemented through the combined efforts of disabled people themselves, their families and communities, and the appropriate health education, vocational and social services.
Source: UN, WHO, and ILO joint position paper (1994)