Volume 3 Issue 14 - July 15, 2005
A world without leprosy is our dream: Dr. Cornalius Walter
“Of the 1.2 billion population, there will be 1,20,000 leprosy patients at any given time in India. Can you say that is not a public health problem any more? I, as a doctor, do not think so,” says Dr. Cornalius Walter, trained General Surgeon from Christian Medical College, Vellore, and Director for South Asia, Leprosy Mission International, sharing his views and experiences with Chitra S. Shankar.
1. What are Leprosy Mission Trust’s primary areas of work?
Leprosy Mission, started in India, works in about 30 countries, in Africa and Asia focusing on all aspects of leprosy. When Leprosy Mission started its work, there was no cure. So till 1940 it was only care of people affected by leprosy. When the first drug came, the picture changed. But even then their family rejected people and cure was not quick. Our hospitals at the time were referred to as ‘leprosarium’. We had thousands of patients living with us, not for a few years but their lifetime.
In 1980, the Multi Drug Therapy (M.D.T.) was introduced, and only now we talk of cure reasonably quickly. We work through hospitals - we had 30 hospitals when I joined and now there are about 18. We work at two levels – at the hospital / institutional level, and community level. The hospitals provide the referral services, cure, surgery, etc. At the community level it is health awareness, awareness about leprosy and community based rehabilitation. As most of these people are illiterate and unskilled, we provide skills through vocational training centres offering both formal and non-formal education in various fields such as welding, carpentry, weaving, etc. We also help with children’s education by paying fees for about 500 children.
2. What are the issues concerning people with / cured of leprosy today?
Leprosy disability is the major issue. Curing leprosy is not difficult. Drugs are available, easy to diagnose. But if the disease has already caused damage, it is usually irreversible. Then deformity comes and then ulceration sets in and finally comes shooing them off as no one wants to associate with them.
The issue for people who are cured is basically how they 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 but have deformities, making a living is the main issue. Second, there are family problems. They do not get an opportunity to study and stigma is still there.
3. I believe one can get a divorce if the spouse has leprosy; is there such an archaic law in our country?
Yes, there is an old law that says one can divorce the spouse if he/she suffers from leprosy. 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.
4. Social exclusion is the worst crisis that leprosy patients face even after decades of mass awareness that leprosy is curable and not really contagious – Why is it so? How do you think we can change this?
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 virtual normal, i.e., functionally as good as a normal person.
Education is also important, but 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.
5. Which are the most affected states in India and what is the prevalence rate in these States? In which of these States are Leprosy Control Programmes currently being conducted?
The worst affected used to be South India, but they took early actions on that. So there the prevalence has come down. Right now the States where leprosy is significant are Bihar, Jharkhand, Chhattisgarh, West Bengal, Uttar Pradesh and Orissa. Probably 60-70 per cent of leprosy numbers in India are from these States.
We have leprosy control programmes in all these States.
6. There is talk of leprosy being eradicated. Do you think leprosy can be completely eradicated from the world?
First of all let me make clear the difference between elimination and eradication. World Health Organisation (W.H.O.) talks about elimination and defines it as a situation where it will be less than one new patient per 10,000 people. Then, the rider is, it will not be anymore a public health problem. The simple elaboration on that is that there will always be patients. With the definition of the Indian population being 1.2 billion, there will be 1,20,000 patients at any given time. The question is: ‘Would you say that is not a public health problem any more?’ I, as a doctor do not think so.
It is better to say that the number of leprosy patients will come down, manageable by the primary health care. No bacterial disease has disappeared from this world with drugs alone. Viral diseases such as small pox, polio have disappeared / are disappearing with vaccines. But leprosy cannot be eradicated; not in my lifetime. Tuberculosis, typhoid, leprosy are all bacterial diseases. Have tuberculosis or typhoid disappeared?
To common man eradication means no more new cases. This is not going to happen any time in the near future. All of us in International Federation of Anti Leprosy Organisations (I.L.E.P.) talk about a world without leprosy. That’s our dream. That’s our hope. But we do not have the technology to achieve it at this stage. We do not have the means for pre-clinical diagnosis.
7. In line with the elimination target set by W.H.O., the Indian Health Ministry has said that the prevalence of leprosy in India is expected to fall to one case per 10,000 people by December 2005. Do you think they are playing down the figures?
Irrespective of what the Indian Government says, we in Leprosy Mission believe that we will continue to focus on leprosy. Even if W.H.O. and Government of India declare that India has achieved the so-called elimination, it means nothing to us and it means nothing to over one lakh patients who develop the disease every year.
Sometimes state authorities tell the workers not to find cases. If someone does not go for treatment regularly, he is taken off the record. When a person is not cured is taken off the record, the number has come down, but he is there in the society with the disease. Let the society and the decision makers know that leprosy will not disappear from 1, January 2006. It will not even disappear by 1 January 2010. It will be decades before that happen.
8. Many experts say that there is a wide gap in registered cases and actual number of people afflicted.
Now it is passive detection. Previously, when there was a vertical system, health workers were trained to suspect leprosy, went from home to home to detect cases. But now in the primary health system no one looks for patients, but people come to health centres. This has changed the whole complexion of diagnosis. If a person does not voluntarily come, no one would know if he/she has leprosy. By not actively looking for cases alone, the numbers have come down.9. What are the laws in India to protect the rights of people with leprosy?
The only law is The Disability Act, 1995. But it does not have anything specific for people with / cured for leprosy. I believe when the law was being formed there was a lot of lobbying for special reservation for leprosy-affected people. There is no specific law to benefit leprosy-affected people. But the word physically disabled includes people with / cured of leprosy, according to the Act.
The only problem is that this Act is not in operation. It is being ignored by the Central Government; it is ignored by State Governments; ignored by district level people. And not many people are doing anything about it.
10. Is The Disability Act 1995 being used by persons with leprosy to avail the various provisions listed under it?
With low level of awareness, most people do not even know the existence of the Disability Act. Unless somebody is proactive and talks to them, they will not become aware. Again, groups like ours emphasise a lot on advocacy issues - help them know what their rights are and let them demand. There is need for many more people to be doing that.
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