Is there still leprosy in India?
Dr. Sunil Deepak, 6 December 2018
Recently in a Twitter debate, a message said that leprosy was eliminated in India in 2005. Then another person asked, “So it means we have no leprosy in India?” The answer was that it is below the WHO cut-off level, implying that it was no longer an important issue. I intervened at this point, specifying that every year, India has about 130,000 new cases of leprosy.
I can understand why people get confused. If it is true that leprosy was eliminated in India in 2005, then how can we still get 130,000 new cases of leprosy every year?
The answer is that in this case, WHO has a specific definition of “elimination” – it refers to persons registered for treatment for leprosy at the end of a year. If number of persons receiving treatment at the end of year is less than 1 per 10,000 population, it means that the country has “eliminated leprosy”. That is how, India has eliminated leprosy even if we get 1.3 lakh new cases every year.
To understand, how we came to this situation, we need to rewind and go back to 1989.
New treatment of leprosy
A new treatment of leprosy was proposed in the early 1980s by the World Health Organization (WHO). This treatment included 3 drugs – Dapsone, Clofazimine and Rifampicine. Being a combination of drugs, the new treatment was called Multi-Drug Treatment or MDT. Before MDT, people needed to take leprosy treatment for decades or even all their life without ever getting cured of the infection. With MDT, within 1-3 years, people could be completely cured of the infection.
Though MDT was such an effective treatment, hospitals and doctors treating leprosy were slow to adopt it. It was thought that doctors needed to carry out some tests before starting MDT and then directly supervise people receiving this treatment. Since in poor countries, laboratories for doing the tests and doctors to supervise the treatment were lacking, most people with leprosy were not given the new drugs.
In 1989, WHO had organized a meeting in Brazaville in Congo to talk about leprosy and MDT. I was there. I don’t remember much about that meeting except for the dismay of many participants that in spite of so much efforts, in most countries less than 10% of the leprosy cases were being treated with MDT. The question was what to do to ensure that everyone could be treated with the new drugs?
Elimination strategy of WHO
In 1991, leprosy team of WHO came out with the new strategy for leprosy elimination. To promote the treatment with MDT, it asked countries to focus on bringing down the leprosy prevalence (by decreasing the number of persons being registered for treatment at the end of year) by the year 2000. As persons completed their treatment, their names could be removed and the prevalence would decrease. The idea was to ignore the number of new cases but to focus on giving them treatment and removing their names from the leprosy registers.
The key to bringing down the prevalence of leprosy was to treat people with MDT. To facilitate it, the treatment duration was decreased and diagnosis of leprosy was simplified – you didn’t need to do any tests for starting MDT and doctors were not needed to supervise the medicine-taking by the patients.
In India, new MDT programmes were started mainly in south India around the last part of 1980s and early 1990s. Only towards the end of 1990s, these MDT programmes reached north India. Thus, India was not able to reach the elimination goal of WHO in 2000, but it managed to achieve it in 2005.
There was another idea underlying the elimination strategy – WHO experts thought that if we could treat all infected persons in a community, then the level of infection will drop, slowly the disease transmission will decrease and new cases of leprosy will also come down.
Leprosy elimination strategy had many positive effects – it managed to increase the MDT coverage to 100% - all leprosy patients started to be treated with MDT. However, it also had a negative effect – when countries reached the elimination goal, they thought that their leprosy problem was finished and often they stopped paying attention to it.
Leprosy in India today
As mentioned earlier, India still has about 130,000 new cases of leprosy every year. After India reached the “elimination” in 2005, we stopped looking for new cases of leprosy in the communities. Instead, now we expect them to report themselves to a Primary Health Care (PHC) centre for diagnosis and treatment. The Government is supposed to carry out mass awareness programmes so that persons suspected of having the disease can go to PHCs for a check-up. However, persons in villages are not always aware of the different changes and misconceptions about leprosy are common. In fact, many leprosy surveys carried out in India over the past decade, have shown that actual number of persons with leprosy in India is much higher than the official reports.
Over the past 10 years (2007 to 2017), the official number of new cases of leprosy in India has been relatively stable – in 2007, we had around 137,000 new cases, while in 2016 the number was around 134,000. Thus, so far the idea that if we treat everyone, the number of new cases will decrease automatically, has not turned out to be true.
Is talking About Leprosy Elimination Useful?
I feel that today it makes no sense to talk about “elimination of leprosy” in the way this goal was defined in 1991. We want people to come to PHC and get treatment for leprosy and at the same time we say that leprosy has been eliminated. It means that we are giving two contradictory messages to people, which creates confusion.
Over the past 3 decades, I have visited leprosy programmes in a large number of countries and seen the impact of MDT and the leprosy situation change in front of me. Today, most new cases of leprosy have few signs of the disease. If they take treatment, they get completely cured without any disfigurement. Thus, leprosy can be like any other curable disease. However, the situation is worse in far-away areas and even urban peripheries because of misconceptions and lack of awareness. People who come late for treatment, many of them end up with needless disfigurement.
This is also true in India, where persons living in isolated areas do not get early access to leprosy treatment.
All countries where leprosy is endemic are facing this situation. Many decision-makers and people think that leprosy has been defeated but in reality, they still have a significant problem and need good leprosy programmes to identify all the new cases and to treat them early so that they do not develop any disabilities due to the disease.
Today leprosy is easily treatable. It is no longer a dreaded disease even if many persons carry prejudices against persons with leprosy because of lack of knowledge.
Many countries including India, which have “eliminated leprosy”, continue to have significant number of new cases. I believe that we need to stop talking of “leprosy elimination” - today, it makes no sense.
Decision makers need to accept that we have and will continue to have a significant number of leprosy cases in India in the near future, who will need to get treatment and other services. In fact, the current strategies of controlling leprosy need to be reviewed to focus on decreasing the number of new cases of leprosy and to reduce the number of persons who get disabilities due to leprosy. Fixing unrealistic targets to reduce leprosy is not the best way to go about it - it penalises hardworking and good leprosy workers, who are seen as a problem if they keep on finding a large number of new cases.
Note: The author was associated with ILEP (International Anti-Leprosy Federation) for a number of years as a member of the medical commission and as its past president. He has conducted evaluation of leprosy programmes in different countries of Asia, Africa and South America. He is one of the organisers of International Leprosy Mailing list and Vice-President of IDEA, the international organisation bringing together persons affected with leprosy.
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