Above: Former Union Health Minister Dr Harsh Vardhan interacting with a leprosy patient/Photo: UNI
As the government hides data and refuses to accept the reality of leprosy cases increasing, it is getting ready to declare that India has eliminated it. This can have dangerous consequences
By Ramesh Menon
Sometimes official announcements of achievements are clearly suspect. Often, it is driven by pressure to make the government look good while the reality could be completely different. On October 2 this year, the government plans to celebrate Mahatma Gandhi’s birthday by announcing that India has eliminated leprosy. But those involved in detection of leprosy say this may be a chimera as more and more cases are being found.
India has around 63 percent of global leprosy cases. At present, it has over 1,36,000 cases. Actually, the country had 13 years back announced that leprosy had been eliminated. This was because WHO had put pressure on it to work towards elimination and said that it was not doing enough and therefore would not want to fund a programme where there was no action.
In 2017, the Central Leprosy Division of the health ministry reported that 1,35,485 new leprosy cases had been detected. That meant that every four minutes somebody was diagnosed with leprosy in India. Last year, many cases were detected and the ministry said it was because all efforts were being made to detect it and it was succeeding. What is frightening is that there are many hidden cases in remote areas where health workers don’t visit. Obviously, we are nowhere close to elimination. But, the government is hell-bent on announcing that it has reached elimination status. On February 1, 2017, Finance Minister Arun Jaitley had said in Parliament that India would eliminate leprosy by 2018.
In 2016, the government admitted that it had found 35,000 new cases in just 14 days as it launched an aggressive programme. In 2017, it found 32,000 new cases during village campaigns. “Cases detected early prevent disability. We have to bring down the incidence of disability,” says Dr Anil Kumar, Deputy Director General (Leprosy), Health Ministry. He said that India has the world’s best leprosy eradication programme and was confident that by October 2, it would eliminate leprosy.
Nearly 60,000 of the new cases detected are already in an advanced stage. These patients would have invariably infected others during the time they had the disease and were not treated. Dr Vineeta Shanker, Executive Director, Sasakawa–India Leprosy Foundation, told India Legal: “It is going to take us many years to eradicate leprosy. The challenge is to reach the last affected person. There is a huge amount of underreporting. We should actually be looking at double the numbers reported. To achieve elimination, we must have real time data. It is a good idea to have door-to-door campaigns for detection and creating awareness just the way India did with TB. The disease has a long gestation period and it will take many years to achieve eradication.”
India had declared elimination 13 years ago, arriving at the “one in 10,000” figure by taking an average of all states, disregarding the vast variations between them. For instance, UP had a high incidence, while in Kerala, it was low. Bunching all these together to superficially achieve elimination status was uncalled for as it led to laxity in the detection programme.
India has over three million people who live with deformities caused by leprosy. Most of them live in over 750 leprosy colonies as they are marginalised by society. Last year, a Supreme Court bench headed by then Chief Justice Dipak Misra in a landmark judgment had directed the centre and state governments to roll out awareness programmes of how leprosy is curable and how its treatment is now freely available. The Court said that there should not be any discrimination against leprosy patients as far as their treatment and education goes. The bench was hearing a petition filed by advocate Pankaj Sinha who said that over 1.25 lakh people in India suffered from stigma due to the apathetic attitude of the government. The patients, he said, did not have free access to education, sanitary benefits or rehabilitation. This resulted in many of them begging and living on the streets. Responding to the petition, the Court said as the disease was curable, central and state governments must ensure that it is eradicated and asked the centre to formulate a policy for it.
Speaking at a function earlier this year, former CJI Misra said that the attitude of society towards the disease must change and if those affected were brought into the mainstream, it would empower them. “Leprosy should not be assumed to be connected with past lives, but should be seen as just another curable disease,” he said.
If India has to eliminate leprosy, it will have to run a very aggressive programme where it conducts house to house surveys like it did with polio. Elimination, incidentally, does not mean eradication. Elimination just means that the incidence is just one among 10,000 people. Even if it reaches this target, India will still have a large number of leprosy patients. When it announced elimination over a decade ago, there was laxity in detection, say activists. This can happen again as India gets ready to announce elimination a second time.
Actually, leprosy is easy to treat. Multi-drug therapy, which is a combination of three antibiotics, is very effective and kills 99 percent of the bacteria that causes the disease with the very first dose. However, many primary health centres do not have facilities for even smear tests to detect leprosy. They also need to be well-lit so that the signs of leprosy on the body can be detected.
Dr Mary Verghese, Executive Director, The Leprosy Mission Trust, told India Legal: “There are high endemic districts where innovative approaches are being adopted to decrease new cases and disability among them. This involves multiple strategies such as active case detection, contact tracing and chemoprophylaxis, capacity building of healthcare providers, sustained awareness-raising, community participation and surveillance. Another crucial area is to scale up research activities to find an effective vaccine to stop transmission.”
Nikita Sarah, a leprosy activist with the same organisation, said: “We need many people to come forward and build partnerships to eliminate leprosy. Only then can innovative approaches, expertise, research, healthcare, awareness and funding take place.”
In the last four years, reports of the National Leprosy Eradication Programme indicate that Odisha, Chandigarh, Delhi, and Lakshadweep are showing an increase in the number of leprosy cases. While the average national child leprosy rate is around nine percent, Tamil Nadu, Punjab, Dadra and Nagar Haveli, Bihar, Mizoram, and Arunachal Pradesh were showing between 14 to 23 percent. A new development in Kerala that is worrying is the detection of more and more cases despite its excellent health infrastructure. This is probably happening as it attracts a large number of migrant labour from UP, Bihar, West Bengal and Odisha as they get better wages than their home states.
Rachna Kumari from Munger in Bihar was married at 18. By the time she was 21, she had two children. All was fine till she was diagnosed with leprosy. Her family disowned her and threw her out. Left to fend for herself, she was determined to battle the disease and reclaim her life. After being cured, she decided to dedicate her life to fighting discrimination in any form.
Today, she sits on the panel of the International Federation of Anti-Leprosy Associations. She works with Lepra Society’s Referral Centre in Munger, Bihar. She told India Legal: “My dream is for the world to be leprosy-free. I tell every new leprosy patient not to feel ashamed but hold their head high and not have any fear. If we all work together with sincerity, we can eradicate leprosy just as we did polio.”
However, the government needs to bring out a white paper on leprosy. For the last year, there has been data suppression on cases. This is not a good signal to fight the disease. Just making a grand announcement of elimination is not going to help.
One has to tackle the challenge with honesty and a sense of purpose.