When Mahatma Gandhi was once called to inaugurate a leprosy home, he said: "I regret I cannot come to open a leprosy home, but I shall be very happy if you invite me to close it." That was around 65 years ago. Leprosy was seen as a major curse. Patients then had no access to medicine and were social outcasts living on the fringes of society or begging for a living.
Leprosy is one of the ancient diseases known to humankind. It existed practically in every continent at one time leaving behind terrifying images of mutilation, rejection and exclusion from society. Ancient Indian classical texts dating back to the sixth century refer to it.
Over 95 per cent of us are naturally immune to leprosy. That is why it is easy to control and treat as only less than 10 per cent of the cases are infectious. The disease spreads only through prolonged contact with infected persons who have not been treated.
The disease mainly affects the skin, peripheral nerves, and mucosa of upper respiratory tract, eyes, and also some internal organs such as bones and testes. Affected patients feel a loss of sensation on parts of their body that have some skin eruptions or pigmentation.
As the bacilli affects the nerves, patients lose sensation in their hands, feet and eyes. This often ends up in disfigurement as sores caused by injuries get ignored, as it does not hurt.
Today, there has been a dramatic change. India, which was one of the worst countries affected, detected only around 1,61,000 new cases last year and the cases under treatment this year is only about 98,000. This still looks like a huge figure in comparison to other countries, but that is because of India's huge population and even one case in 10,000 works out to be a huge figure. In June the benchmark figure had come down to 0.86 cases per 10,000.
The profile of leprosy has also changed. Earlier, 10 per cent of the patients suffered from deformity as the disease was detected late. Now, it is down to two per cent and should come down even more. Even leprosy colonies have changed. Normal people also live among them now as the fear of the disease has lessened as medicines can cure.
Dr Derek Lobo, Regional Advisor, Leprosy and Diseases targeted for Elimination and Eradication of the World Health Organization at New Delhi, is optimistic that by the end of 2007, all the six Indian states and the two union territories will have achieved the 'elimination' status. The World Health Organization is presently aiming at ensuring that all countries get to the elimination stage first. It is presently not even talking of total eradication, as it would take decades. In India, the states that still have more than one case per 10,000 populations are Bihar, Uttar Pradesh, Jharkhand, Chattisgarh, West Bengal and Delhi. Two union territories that are lagging behind are Chandigarh and Dadra Nagar Haveli. But on the whole, India has eliminated it as a public health problem.
There is enough evidence to be optimistic. Andhra Pradesh and Tamilnadu were two of the southern states where prevalence of the disease was high. Today, it is well under control with medicines easily available in all primary health centers. There is also an increased awareness of how it can be cured and a political will to fight it. About 15 years ago, Tamilnadu had one-lakh leprosy cases. Today, it is negligible. The state used 2500 personnel solely to trigger off a sustained campaign. Then, it motivated its 6000 odd workers to work towards elimination.
Very recently, Orissa has achieved the elimination goal, and Chief Minister Naveen Patnaik is scheduled to formally announce tshe same in a state level health workshop in September, after current verification of figures is complete.
Says Yohei Sasakawa, Chairman of the Nippon Foundation, Japan, and the WHO Goodwill Ambassador for the Elimination of Leprosy, who gave 10 million dollars to fund medicine for leprosy patients: "India has achieved a great milestone. The challenge now is to work at all levels and ensure a commitment made at all levels of the hierarchy to banish leprosy. Every family in India should be informed about leprosy; about it being a totally curable disease; that drugs are available free; that there is absolutely no cause to fear the disease, and there is no reason for discrimination." In the last four years, Sasakawa has been to India 19 times to network with organisations and government bodies that are fighting leprosy. "In the last 26 years, since the development of Multi Drug Therapy (MDT) to cure leprosy, eleven million Indians have been cured, but people continue to treat them as if they still have the disease and could transmit them," he said.
WHO Goodwill Ambassador Yohei Sasakawa with a leprosy patient in India.
Sasakawa has been involved in leprosy elimination for more than 30 years. His efforts have earned him worldwide praise and awards, including the Millennium Gandhi Award. Additionally, in 2001, WHO named him Special Ambassador for the Elimination of Leprosy, a title that he has worked hard to give meaning to. Most recently, he has become WHO's Goodwill Ambassador for Leprosy Elimination.
Yet, the fact remains that India is still the home to nearly 60 per cent of the world's leprosy patients.
Leprosy is not fatal but those who contract it are feared. So they get isolated and are condemned to spend the rest of their life in a sickening whirlpool of discrimination. Ironically, this is in spite of the fact that today leprosy is completely curable within 6 to 12 months with MDT. Prompt treatment ensures that there is no deformity. The drug has cured over 14 million worldwide. There were 122 endemic countries that had the disease. Today, only nine remain. One of them is India.
Former Health Minister, Karan Singh, of the Congress party, says that he is delighted to see the number of cases go down drastically, but says that India must work at total eradication even if it will take a long time and lots of committed work. Only total elimination in India will mitigate stigma, he said.
Karan Singh says one idea worth exploring is to get religious leaders to talk about the fact that it is not a genetic disease and it can easily be cured. They could also be used to spread the word that it is not God's curse and is just a medical problem, he added.
Global detection of new cases continues to show a sharp decline: the number of new cases reported fell by more than 110,000 cases (27%) during 2005 compared with the number of new cases reported during 2004.
Gokhale says that the strategy to fight leprosy has to be culture specific with a clear understanding of the community one is dealing with. Only then can one fight the cynicism about the disease and the myths that go with it. Awareness is the key. Residents of Rajnandgaon district in Madhya Pradesh see leprosy as an ailment that can easily be treated. This is because Danida, a Danish organisation, drove out fear of the disease with a systematic awareness campaign.
Gokhale says that the biggest challenge is to get society to accept the cured leprosy patients. Most of them painfully discovered that even their families did not want them as the stigma was so strong. "Leprosy may be eliminated as a public health problem in India as in most states it is only one case per ten thousand. But what about rehabilitating the thousands of cured patients who linger on the sidelines of society as no one wants to even touch them. Many of them are beggars in urban India as it is the only way to get a meal. They are not given jobs as they are disfigured and there is tremendous fear of the disease."
Gokhale recounts of an instance where an aged inmate of a home set up for cured leprosy patients begged him not to introduce her to a bureaucrat who was to be the chief guest at that home that day. Gokhale agreed. After the bureaucrat left, he asked her why she had made the strange request. She said that her husband and in-laws had told him that his mother was dead when she contracted leprosy and was removed from home. "I want him to continue living without the burden of knowing that I was alive in a leprosy home," she said tearfully.
The Global Appeal against Leprosy Stigma released by Sasakawa early this year underlined that 20 million cured leprosy affected people in the world today live a life "better than death, but worse than living" for no fault of their own. Besides, around 100 million family members also suffer from stigma and discrimination even though the victims today are fully cured. They live on the fringes of society, unwanted, uncared and discriminated against. They do not feel they have any human rights as it is denied to them.
Removing stigma is going to be no easy task. Almost three thousand years of history, culture, myths and wrong perceptions have shaped the public beliefs regarding leprosy:
It is dangerous and unclean.
It is God's curse and his way to punish with hideous deformities to their faces and limbs.
It is not just the affliction of the body, but of the soul as it embodies an immoral life.
It is incurable and spreads by touch.
The truth is that all of these are untrue and scientifically proven to be false.
Unfortunately, except for the last quarter of a century, it was untreatable. Those affected were forced to live and die an undignified lie. The affected parts had no physical pain, but their lives were punctuated with pain all through. The stigma that stuck to them was worse than seeing body parts like the tip of the nose, fingers and toes just disappear.
Towards victory at the last mile
The International Leprosy Union has started a programme called Lokdoot, in which those cured from leprosy fan into society and openly say that they had the disease and had got completely cured. Bharat Scouts and Guides work with the Lokdoot taking them and their message to the community.
Today, there is a two-pronged attempt to fight the stigma and ensure welfare of the people affected by leprosy. One, the National Forum of the People Affected by Leprosy, under the leadership of Dr P K Gopal, who has been cured is organising workshops to train the leaders of the affected people of some 700 leprosy colonies of India in articulating and solving their colony-specific problems and know their rights and duties. Secondly, a trust with an initial endowment of 10 million US dollars is being set up by Sasakawa in India, with a matching grant of 10 million more from India Inc and organizations here, to go into vocational training of the women and children of the people affected by leprosy and their general welfare measures. The Trust is likely to be operational in a few months.
However, all these will bear fruit only when people dispel the myths of curse and infection associated with leprosy and learn to accept the scientific truths that the disease is completely curable with MDT in less than a year, deformity is not the disease but the consequence of it which can be fully avoided if treated in time, and that the society will continue doing a grave injustice to the affected people if their human rights to life, liberty, job, property and free movement are curtailed and even denied.
Leprosy workers are convinced that the key to helping the cured, is to ensure their economic independence. Wherever they have got jobs and are able to stand on their feet, they have earned respect. The Jal Mehta Rehablitation Centre in Pune, for instance, has now a factory where parts of Telco trucks are manufactured by those cured from leprosy. It has helped many of them see a new day. The road ahead for complete eradication of leprosy from India is not as easy as it looks, but a concentrated campaign and strategy will help it slowly inch towards that dream.