Volume 4 Issue 4 - February 15, 2006

Making leprosy elimination meaningful by ending stigma and exclusion

India recently achieved the target of eliminating leprosy. But the challenge of ending the disabling affect of this disease, caused by the deformities that it creates and the stigma associated with it, needs to be taken on strongly, says Parvinder Singh.

Picture of disabled leprosy patient

On 30 January this year Indian Government announced elimination of the crippling and deforming disease of leprosy. The landmark proclamation by President of India A. P. J. Abdul Kalam coincided with the Anti Leprosy Day and death anniversary of Mahatma Gandhi much to the joy of media and the social sector.

But to those working beyond statistical targets this is a moment of introspection and confronting a vital question. Answer to which would decide the true measure of how magnanimously should we be rating this feat. The question is about eliminating the disabling affect of this disease both in terms the deformities that it creates and the stigma associated with it that has for centuries resulted in exclusion of leprosy affected people.

A note of caution needs to be added for the uninitiated, which is that the term elimination here only means that cases of leprosy came down to 1.07 lakh, or the prevalence rate stood at 0.95 cases per 10,000 population, as on 31 December 2005. This is a globally accepted prevalence rate for declaring elimination and it would tale another 20 to 25 years before the disease is totally eradicated.

“Disability caused by leprosy is the major issue. Curing leprosy is not difficult. It is easy to diagnose and drugs are available. But if the disease has already caused damage, it is usually irreversible. Then deformity comes and then ulceration sets in and finally comes the stigma as no one wants to associate with them,” Director South Asia for Leprosy Mission International, Dr. Cornalius Walter had said in an earlier interview with D.N.I.S.

Dr. Walter had said that the issue for people who are cured was basically about how to make a living. If they are unskilled and illiterate, it is a real problem. Nobody even knows about those who get cured, without any deformity. But for those who have been cured and have deformities, making a living is the main issue.

With the information revolution and rising levels of literacy, the issue about stigma for a 100 per cent curable disease may come as a shocker. But it is a reality that plagues not just the small towns and interior villages but even the National Capital of Delhi.

Here are some bitter facts about the level of misconception that Delhiites carry in their educated minds about leprosy based on a survey conducted last year.

Among those surveyed, 90 per cent men and little less than 84 per cent women in Delhi seemed ignorant about symptoms of leprosy. Only 33 per cent men and even lesser number of women (14 per cent) seemed informed about the basic symptom of ‘pale patches without sensation’. Even among graduates only one out of three respondents seemed aware of the symptoms associated with the disease.

It is mind-boggling to see the profile of these respondents. It is briefly like this, the study covered people between the age group of 21-40 years of which 58 per cent were graduates, while one-tenth of those surveyed were less than secondary (Class X) level educated. Most of the men and women interviewed were employed. Of the rest, among men, around 30 per cent were traders and shopkeepers and around one-fourth of the women interviewed were students and housewives.

India officially initiated the anti-leprosy drive almost immediately after attaining Independence. Overall international concern and World Health Organisation has played a vital role in keeping the tempo alive over the decades. But the aspect of rehabilitation and integrating people disabled by the disease has been found wanting. Almost all cities have remnants of the archetypal leper colonies outside the city limits or as small clusters, tucked inside the underbelly of urban habitation, devoid of the basic amenities.

The ambivalence on the part of the Indian Government of not ending a clause in the Hindu Marriage Act that allows a person to seek divorce from a leprosy affected partner is revealing of how it has been playing on the back-foot by not taking punitive measure to end the stigma.

And to those who say that it’s just an archaic law that has escaped notice of policy makers, here is an eye-opener. Last year a 30-year-old woman was served a legal notice for divorce by her husband on the plea that she suffers from leprosy.

“A white spot which appeared from nowhere on my neck made him (her husband) suspicious,” Smidha was quoted as saying in news daily. “When doctors diagnosed it as leprosy, he started misbehaving with me and sought separation. Unfortunately there is a provision in Hindu Marriage Act, where he can ask for divorce,” she added.

Picture of nerve damage casued by leprosy

Reacting to this clause, Dr. Walter said: We are lobbying to get it changed. But as you may know, making a law or abolishing a law does not change society. Changes in the society will come with awareness and education.

In terms of steps that can be taken to address this issue he listed out the following:

The biggest challenge is the stigma - the whole issue of discrimination because of a disease that does not kill anyone, but might cause deformity. One solution is early diagnosis and cure. If a person is cured without deformity, the issue of stigma doesn’t arise. With obvious deformity begins social exclusion.

Another challenge is for the society to be aware of health issues. Just like one wants to know about tuberculosis or cholera, people should also know about leprosy. One other issue is not to be afraid. It is curable. Again, if one has a disability it is not the end of the world. We have reconstructive surgery to set the person’s hands and feet to functionally as good as a normal person.

Education is important, but is not the only answer. It is a change of attitude that comes through people’s interactions. But how many people in a social function would discuss leprosy? And I don’t know any club that says, ‘let’s sit down and talk about leprosy’. So you give messages through radio, TV, write-ups – but most people don’t pick it up. Yet communication must go on.

A look at the state-wise figures is important to establish the link between poverty, education and leprosy. Bihar, Chhattisgarh, Jharkhand, Orissa, Uttar Pradesh and West Bengal, accounting for 41 per cent of the total population, have a prevalence rate of between 1 and 3 per 10,000, making up 60 per cent of the cases.

Delhi, Chandigarh, Dadra and Nagar Haveli have a very high prevalence rate of between 2 and 3 per 10,000, primarily due to patients migrating from the neighbouring states for treatment.

At present, Chhattisgarh has the highest prevalence rate of 2.44, followed by Delhi at 2.11. The lowest is in Meghalaya at 0.11 per 10,000. All four southern States have a low prevalence rate of less than 0.60 per 10, 000.

Until the 1950s, 70 per cent of the total leprosy cases came from India with the southern states accounting for a bulk of these.

Disabilities caused by leprosy are recognised under the Disability Act 1995. But with the implementation of this Act being minimal even after a decade since it was passed, the benefit this may cause leprosy-affected people is debatable.

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