Leprosy makes a quiet comeback in India
MUMBAI: For months, Deonar resident Suheil watched a skin patch grow bigger above his right elbow. The 24-year-old manager from a youth hostel in Mumbai Central didn’t lose sleep over the painless skin condition last July till his co-worker pointed out it could be leprosy.
Panic-stricken, the next morning he rushed to a private skin doctor who referred him to the NGO, Bombay Leprosy Project’s (BLP) Chunabhatti clinic. His fears were confirmed. He had contracted the paucibacillary or the milder form of leprosy, an infectious disease India eliminated in 2005. He is on a six-month-course now, but always anxious about what would happen if his employers found out. 
Suheil is among the 362 people to be detected with leprosy in Mumbai between April and December 2018. In the last five years, the city has recorded nearly 2,500 new cases and since elimination over 10,000. A disease is considered eliminated if there is less than one case for every 10,000 in general population. The next step would be eradication.
In the case of leprosy, though, what is worrying is that it is seeing transmission into newer areas. And that’s not the only scary part. In the fresh detections, 63% were multibacillary cases, meaning the person had more than five patches, indicative of the disease’s advanced stage. Another sign of missed or late detection is deformities -- 11% of the cases had some deformity at the time of diagnosis. Worryingly, 12% of the freshly infected were children. A microanalysis shows the city is detecting cases from every nook and corner.
Nearly 14 years after leprosy was eliminated from India, lakhs continue to be infected with the bacterial infection, known to affect the skin and peripheral nerves and in advanced stages cause deformity and disfigurement. In 2017-18, an estimated 1.26 lakh people were detected with leprosy in India, home to 60% of the world’s new cases. Almost 50% of the new cases are multibacillary, and nearly 40% afflicted are women. At least 12,000 (8-9%) of the infected are children.
Leprosy with deformity indicates we are missing early diagnosis, and infection in children...both are bad news if we are looking at eradication
Dr Vivek Pai, director, Bombay Leprosy Project
Sakeena Khan, 15, got multibacillary leprosy that had afflicted her father too. When the spots first appeared on the right hand, she was 12 and studying in the seventh standard. She wrote off what looked like a white zigzag line as a rash, till 14 months later a feeling of numbness set in. The worst came last year when she was preparing for the class 10 exams. Her fingers lost their flexibility and curled over to assume claw-like shape, making it impossible for her to hold a pen. The teenager flunked the exam. Luckily for her, the deformity could be 90% reversed with timely initiation of treatment. Her schooling future remains uncertain though.
“Multibacillary leprosy with deformity indicate that we are missing early diagnosis, and infection in children mean there is active transmission, and both are bad news if we are looking at eradication,” said Dr Vivek Pai, director of Bombay Leprosy Project (BLP), an organisation working to eradicate leprosy since 1976. Khan’s family of 11 members, including her seven siblings and parents, reside at the densely populated slum of Bainganwadi in Govandi, which is a stone’s throw from the Deonar dumping ground. It is estimated that nearly 70-75% of the residents settled here have migrated from Bihar, UP and Odisha as rooms are available for as little as Rs 200-Rs 400.
LEPROSYThe Disease* Caused by mycobacterium leprae
* 100% curable. Bacilli has incubation period of 3-6 years
* Infected people don't feel pain as no toxins are produced
* Disease affects nerves
* If not treated early, can lead to deformitiesTransmission* Healthy person breathes droplets containing bacteria
* Prolonged, close contact with someone with untreated leprosy
* 95% people are naturally immunePrevention* Early diagnosis, treatment of infected people
* Preventive doses available for households with infected people
* Annual examinations recommended for at least five yearsDoes not spread* By shaking hands or hugging
* Sitting next to an infected person on a bus or train
* Sitting together for a meal
Mohammed Amjad, 22, who works as a hairdresser at a parlour in Bainganwadi, grew sleepless when he found a white patch growing bigger on his forehead. Worried that it would spread to his entire face, he rushed to the skin clinic run by NGO Lok Seva Sangam (LSS) and has been under treatment for one month. The native of Azamgarh, UP, says he has been staying here since the past five years, though he frequently travels home. He is certain he contracted the disease in Mumbai. “Nobody in my village has leprosy,” he says.
Bihar, UP and Maharashtra account for more than a third of the country’s new detections. These states record anything between 12,000 to 16,000 cases annually. They are followed by states like West Bengal, Odisha and Chhattisgarh.
“Migration is one of the biggest challenges in leprosy, like in any health programme. It makes it difficult to trace the index case as well as follow-up with patients,” said Dr Raju Jotkar, assistant director, Maharashtra’s state health services. Around 25 of the 362 cases found last year in Mumbai were from Bainganwadi alone. “Till leprosy is wiped out from places like Baiganwadi, Mumbai can never eradicate the disease as the infection will continue to travel,” said Swapnadip Jadhav, programme coordinator at LSS. He says the slums have hundreds of people moving in every day. “Even if you screen the entire population today, there will be new residents tomorrow. It’s a vicious cycle.”
In several instances, leprosy has also been found to infect multiple members from a single household, a phenomenon normally associated with more virulent communicable diseases such as tuberculosis or chicken pox.
Migration is one of the biggest challenges in leprosy...It makes it difficult to trace the index case as well as follow-up with patients
Dr Raju Jotkar, assistant director, Maharashtra’s state health services
A resident of Shivaji Nagar, a slum in the eastern suburbs, Asra Khatun’s six-year-old daughter and five-year-old son got the disease two years after she was infected. Despite medication, the tingling and numbness in her legs are yet to be completely cured. Khatun, who hails from Bihar, said her in-laws are unaware of the disease. Interestingly, cluster infections have been found in non-slum localities too. BLP recently treated a 45-year-old man from Bandra, who passed on the infection to his wife and college-going daughter. In another case from the western suburb, three brothers living together were detected with multibacillary leprosy.
To complicate matters, 10% of Indian patients develop pure neural leprosy, where there are no external signs such as skin patches or nodules. Dr Pai says such manifestation is typical to India. For instance, UP native Sheikh Mohammed (33), who works at a meat shop in Chembur, was perplexed when he couldn't grip things with his right hand. “The mug would slip out of my hand while bathing. I struggled to tear chapati or button my shirt. Gradually, I realised my right hand couldn’t feel heat, burns or cold,” he said. The shop owner removed him from the job of cutting meat fearing that Sheikh may hurt himself and not feel a thing. It was only after he developed clawed fingers that a doctor suspected leprosy. Pai added that to detect such presentations swiftly there has to be a paradigm shift in training doctors, nurses, community workers, who may not look beyond the obvious external signs.
Dr Anil Kumar, deputy director general of Central Leprosy Division, however, is filled with optimism and says that new detections should be looked at as a positive sign and not that of the disease growing. “After 2005’s elimination status, leprosy was put in the back burner, but we have revived efforts in the last three years. Prevalence of leprosy in India remains 0.67/ 10, 000 population and increase in cases is only because of Leprosy Case Detection Campaign (LCDC), Focused Leprosy Campaign (FLC), etc,” he said, adding that the burden of hidden cases is immense.
Our best bet (to prevent leprosy) is to detect cases early and cut transmission
Dr Anil Kumar, Central Leprosy Division
Last year, an LCDC held for merely 14 days found as many as 35,000 cases from endemic districts. “There is no quick method to eradicate leprosy as the disease itself takes an average of six years or even more to incubate. You may see results in malaria and dengue overnight but leprosy is different. The person infected today will come with the disease six years later, so our best bet is to detect cases early and cut transmission,” he said. He added that for the first time family or contacts of infected persons will be given rifampicin as a preventive dose. “The challenge for us is to reduce grade II deformity to less than 1/million population from our current rate of 4/million population,” he said.Leprosy cases worldwide2017* South-East-Asia - 153,487
* Americas - 29,101
* Africa - 20,416
* Western Pacific - 4,084
* Eastern Mediterranean - 3,550
* Europe - 33
A step to fight leprosy would be allocating money and manpower. Currently, less than Rs 50 crore is earmarked for leprosy control in India. Delhi alone gets 10 times that to control dengue and malaria. Pai says since leprosy doesn't kill people, funds are hard to come by.
(Names have been changed to protect identities)
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