Leprosy
Hansen's disease, commonly called "leprosy", can now be cured easily and cheaply through multi-drug therapy (MDT). Eradication of the disease worldwide is a realistic goal. However, those affected by the disease need not only a medical cure, but help in rebuilding their shattered lives. An estimated 2 million people worldwide are affected by leprosy but are not yet cured, while 4 million others have been cured but have impairments or disabilities as a result of the disease.
For the foreseeable future, more than half a million new cases of leprosy will be diagnosed each year worldwide, of which some 100,000 will be children. Many of these people will already be severely disabled because their treatment came too late. It is therefore very important that the 2 million people not yet cured of leprosy receive treatment and assistance before severe disability occurs.
The way in which any individual understands leprosy depends on his or her particular perspective. Epidemiologists puzzle over questions of incidence and prevalence; government health officials check its effects on stretched budgets; to many lay Westerners, leprosy is a horror that remains in images in films such as Ben Hur; while for academics and medics leprosy is a mycobacterial invasion that can be cured by applying powerful bactericidal drugs.
'Cured', however, is a term that can be sadly misleading. A person in Pune, India, once described leprosy as "my living death". A particularly sad reflection was that, from a medical perspective, the patient was cured - that is, having taken regular doses of a recognised multi-drug therapy, his body had been cleared of leprosy bacilli. However, because of recurrent foot ulcers and nerve pains, the society in which he lives does not consider him cured. His family will not accept him - and he suffers continued physical and psychological distress as a consequence. It was an apt metaphor to speak of "my living death", because to be dislocated from one's family or community in a Hindu society, such as Nepal, is to be denied any meaningful role in life.
Although the body can be cleared of the invasion of leprosy bacilli (Mycobacterium leprae), one of the sad consequences of the disease is that people are often left with nerve damage that deprives them of the ability to feel. Sometimes, the resulting loss of muscle function can lead to paralysis. The hands, feet and eyes of people affected by leprosy are most at risk, although facial paralysis and deformity are also common.
Without the benefits of pain it is surprisingly very difficult to function throughout the daily routines of life. The body is no longer protected from damage that would ordinarily be avoided as a result of sensory alarms to the brain. Moreover, even when wounds are apparent, the demands of life for those trapped in poverty often deny them opportunities to avoid infection or further damage. Infection thus frequently leads to deformity and ulceration; and these lead to ostracism - which leads to further social and psychological damage. The resulting poverty increases the probability of more physical damage and, thus, the apparently inexorable vortex of physical and social disaster accelerates. If this circularity - of impairment, disability and handicap with poverty and marginalisation - is to be interrupted, then individuals, families and communities must be enabled to develop strategies to overcome such effects.
One of the principal aims of NLT is to work with other NGOs to implement governmental strategies to control and eventually eliminate leprosy as a public health problem in Nepal. However, NLT is also strongly committed to seeking and implementing methods to overcome the dehumanising effects of leprosy for those affected by it, because it recognises the inherent value of the individual. The Trust has adopted the patients' perspective of what it means to be cured and is resolved to continue to strive with them until such time as they are allowed the simple dignity of acceptance and participation in society.
Whilst medical support is central to NLT's work in Nepal, the general philosophy is thus that leprosy, having both medical and social consequences, demands a holistic strategy.
RECENT NEWS
World Leprosy update
Nepal remains one of nine countries in which leprosy is still a public health problem, where the goal of leprosy elimination is yet to be reached. The other countries are India, six countries in Africa (Angola, Central African Republic, DR Congo, Madagascar, Mozambique and Tanzania); and, Brazil. There are also a few very small countries, such as Timor-Leste, yet to achieve elimination.
The WHO’s SE Asia region (which includes India and Nepal) is near to achieving elimination: the regional prevalence rate in July 2005 was 1.04 per 10,000 population, and it was expected to fall below 1 per 10,000 by the end of 2005. SE Asia is the last WHO region to achieve elimination. This is a remarkable achievement, considering it is the geographical area with the highest burden of leprosy cases.
Following intensified efforts, leprosy prevalence and case detection in India have dramatically declined in the past two years. However, Nepal and Timor-Leste may find it difficult to reach the elimination goal by the end of 2005. WHO is now focusing more effort on these two countries. There is a strong possibility that Nepal will achieve the goal in 2006 and Timor-Leste by 2007.
In 1985 there were 122 countries with a prevalence rate of more than 1 in 10,000. There is still a lot of work to be accomplished worldwide, with the top priority being to achieve elimination in the nine remaining countries. Then, the priority should be elimination at the sub-national level in the individual countries to further reduce the burden of leprosy.
As new cases decline further, the challenge will be to sustain political commitment and ensure adequate resources to maintain the gains achieved and quality of services. We will have to continue enhancing knowledge and skills of general health service staff, and ensure that people with deformity continue receiving proper treatment and care.
The main partner of the WHO in eliminating leprosy since 1975 (when the global elimination programme began) has been The Nippon Foundation and Sasakawa Memorial Health Foundation of Japan, besides the national governments in endemic countries. The programme has benefited greatly from the free supply of drugs to all endemic countries since 1995. The Nippon Foundation defrayed the cost of drugs between 1995 and 2000, then the pharmaceutical company Novartis AG started supplying drugs in 2000 and has continued thereafter.
On 7 November 2005, Novartis signed an agreement with the WHO to continue providing free medicines until the end of 2010 (valued at between US$ 14.5 and 24.5 million, depending on the number of cases detected). The MDT donated is made available by WHO free to all leprosy patients in endemic countries.
Since 1985, more than 14 million leprosy patients worldwide have been cured of leprosy through MDT. The first phase of Novartis’s donation (2000 to 2005) led to the cure of about 4 million patients, following provision of drugs worth US$ 40 million.
The number of new cases detected in 2004 was 407,000, representing a satisfactory reduction. At the start of 2005, the number of people with leprosy on MDT was 286,000, 38% less than at the beginning of 2004. It is hoped that the backlog of previously undetected cases is finally being reached.
In general there has been much progress in recent years, with improved coverage of leprosy services resulting from integration of treatment into general health systems. WHO intends to work closely with all member states to sustain the process of integration and maintain the political commitment required as leprosy disappears as a public health problem.
Mr. Yohei Sasakawa, WHO Goodwill Ambassador for the elimination of leprosy has called for renewed cooperation between all concerned stakeholders. "The elimination of leprosy… is a milestone along the way to fundamentally eradicating both the disease and the social stigma that for so long has accompanied it."
WHO hopes to continue its partnerships until not only leprosy elimination is reached, but also the ultimate goal of a leprosy-free world. WHO has developed global as well as regional strategic plans for the period 2006-2010, to further tackle the remaining challenges of leprosy elimination.
Leprosy is a chronic disease caused by a bacterium, Mycobacterium leprae. It is not highly infectious, but can cause severe and permanent damage to the skin, nerves, limbs and eyes if untreated. Treatment is simple, effective and free in all countries.
Taken mostly from speech by Dr. Samlee Plianbangchang, Regional Director, WHO SE Asia at the Annual Meeting of The Nippon Foundation/SMHF (Delhi, 17-18 October 2005), plus from WHO press release on Novartis extension agreement.
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