Hansen’s disease, commonly called “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 so that 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. Since 1981 we know that over 16 million people have been treated with MDT and of these over 4 million have irreversible disability. Over 2 million people worldwide have visible disabilities caused by leprosy and and 1,000s of people affected by leprosy will develop irreversible disability every year. About 200,000 people worldwide are currently on treatment for leprosy but many more are affected but as yet undiagnosed.
Although the global numbers of new cases detected annually is decreasing significantly, there were still over 202,000 new cases found in 2019 of which the majority were found in India. Approximately 10% were children. Many of these people will already be severely disabled because their treatment came too late. It is therefore very important that the large numbers of people affected by leprosy but not yet found and diagnosed, 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; most Westerners think of leprosy as a horror only encountered in films such as Ben Hur; while for academics and medics leprosy is a mycobacterial invasion that can be cured by applying powerful bacteriocidal drugs.
‘Cured’, however, is a misleading term. A person in Pune, India, once described leprosy as “my living death”. Sadly, 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 pain, 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. His personal perspective of “my living death” is appropriate, 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.
One of the sad consequences of leprosy is that people are often left with nerve damage that deprives them of the ability to feel. Sometimes, the associated 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 benefit of pain it is surprisingly 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 so the vicious circle of physical and social disaster accelerates. If this vicious circle – 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 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 work 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 that leprosy, having both medical and social consequences, demands a holistic strategy.
World Leprosy update
In October 2009 the overall prevalence of leprosy in Nepal finally fell below 1 in 10,000 of the population and Nepal is therefore considered a country where leprosy is no longer a “public health problem”, although there are still large areas in the south of Nepal where prevalence is much higher. Brazil is one of the few countries still officially above this level, although in some countries the level is climbing again as attention has shifted away from leprosy. Over 100 countries still report leprosy statistics to the WHO and so leprosy continues to be very much with us.
The WHO’s SE Asia region (which includes India and Nepal) was the last WHO region to achieve elimination (prevalence of less than 1 in 10,000). This is a remarkable achievement, considering it is the geographical area with the highest burden of leprosy cases. However, a high and rising prevalence in the north of India continues to influence levels of leprosy in southern Nepal which in several large areas are still well above the ‘1 in 10000’ benchmark for ‘elimination’. This the area where NLT is working.
In 1985 there were 122 countries with a prevalence rate of more than 1 in 10,000. In 2019 there are few countries above this level but there is still a lot of work to be accomplished worldwide, with the top priority being to achieve elimination in the the last remaining countries. Alongside that, elimination at the sub-national level in the individual countries must be pursued to further reduce the burden of leprosy. It is important to remember that ‘elimination’ does not equal ‘eradication’.
As new cases decline further, the challenge will be to sustain political commitment and ensure adequate resources to maintain the gains achieved and the quality of services. We need to continue enhancing the knowledge and skills of general health service staff, and ensure that people with deformity receive 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 with support from The Nippon Foundation between 1995 and 2000, and the pharmaceutical company Novartis AG from 2000 to the present time. This support, coordinated by the WHO, has led to the cure of millions of patients and has been worth many millions of dollars.
There has been progress in recent years, with improved coverage of leprosy services resulting from integration of treatment into general health systems. The downside to this has been that some focus on leprosy has been lost, as health staff are no longer dedicated to this disease. However, WHO has maintained its intention to work closely with all member states to sustain the process of integration and maintain the political commitment required as leprosy ceases to be a significant 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 2016-2020, to continue tackling the challenges of leprosy elimination, but there is a great deal of work still to do which will last for many years beyond 2020.
(Some of the above is taken from a 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 a WHO press release on Novartis extension agreement.)