Leprosy 2.0

Pyare Ansari couldn’t quite describe the sensation. All that he knew, four months ago, was that the little finger of his right hand was numb, but felt prickly at the same time. In two months, the numbness had spread to two other fingers and he found it difficult to thread a needle when he was at his south Delhi workplace.

Last month, when he found a small white patch on his arm, he finally went to see a doctor. A battery of tests later, the 26-year-old tailor learnt that he had Hansen’s disease, another name for leprosy.

“I can’t sleep at night. When people talk it feels too loud. My temples are always throbbing. I feel like I’m thinning, wasting away,” he tells BLink, as he waits for his turn to see his doctors at the Safdarjung Hospital, one of Delhi’s largest public health centres.

India had thought it had eliminated leprosy some 13 years ago. But it is seeing a resurgence of the bacterial disease, which is curable but carries a stigma that refuses to fade.

People with leprosy line up at the hospital’s waiting hall, every Tuesday at 12 noon. This is the weekly slot earmarked in the dermatology department for the registration of new leprosy cases. The hospital has seen 159 new cases of leprosy since April this year and its doctors are treating 370 people in all. Delhi’s two other major government hospitals see fewer patients: The All India Institute of Medical Sciences (AIIMS) currently handles 238 cases, and Guru Teg Bahadur (GTB) hospital, another 91. The three hospitals together treat about 33 per cent of the Capital’s reported leprosy cases.

Fear strikes: Pyare Ansari, diagnosed with leprosy, is worried about his trembling hands and throbbing temples

Ansari’s hands tremble when he worries about not being able to work at the sewing machine to support his dependent parents and school-going siblings. At the hospital, a doctor has scribbled a date on his prescription, asking him to return after he is done with his course of antibiotics. “The medicines might be making my hands tremble. What should I do?” he asks in panic.

The only relief he gets is when he looks around him, and sees that he’s not the only one with leprosy. Among the new cases are masons, other workers and even a banker in a pair of crisp blue jeans and Adidas shoes.

“I’m not worked up. I have told my family, but not my colleagues at work. The medicines have already had an effect,” says the bespectacled bank employee from Badarpur in southeast Delhi.

Diagnosis delay

In 2016, there were 2,16,108 new leprosy cases registered globally — India accounted for over half of them. The latest National Leprosy Elimination Programme (NLEP) report, released by the government’s health ministry, shows 1,35,485 new detections in 2016-17. Of these, 5,245 suffered from grade II disability, which mean that their disease had been diagnosed late.

Uphill to dignity: Sarang bhai still begs for alms on the days his stationery shop fetches no customers

The last few years had shown a fall in the incidence of leprosy. There were 1,26,913 lakh new cases in 2013-14 and 1,27,334 lakh in 2015-16, as compared to 1.34 lakh new cases in 2008-09. “But we are not improving at the pace we should,” says Dr V Ramesh, senior dermatologist at Safdarjung Hospital.

A section believes that the rise in numbers reflects better surveillance. “The spike in numbers signals an increase in proactive reporting, a practice we have worked hard to inculcate,” says Dr Anil Kumar, deputy director general (leprosy), ministry of health.

Although leprosy has long been prevalent in India, there was no data collected before 1955. The NLEP (earlier known as the National Leprosy Control Programme), which was a part of India’s first five year plan, led to the collection of extensive data and the setting up of Leprosy Control Units in endemic districts. By 1980, 40 lakh cases had been recorded, showing a prevalence rate of 58 per 10,000 people. India still has over 800 leprosy colonies, where people live even after they have been cured. BL ink visited a few colonies in Indore.

Falling rates

India, hoping to join the high table of developed nations, viewed leprosy as a national shame. By 2000, it thought it would eliminate leprosy. “It became a matter of prestige,” says Dr Jayaprakash Muliyil, an epidemiologist, ex-principal of the Christian Medical College, Vellore, and former medical consultant to The Leprosy Mission International, an organisation working towards the eradication of the disease.

He points out that between 2000 and 2005, there was a steep fall in the registration of new cases. In 2005, prevalence rates fell to less than 1 in 10,000, the required benchmark for a disease to be listed as “eliminated”.

But, with elimination, leprosy became a low-priority disease.

Medical experts such as Dr Muliyil believe that the disease then moved underground. “Post 2005, we witnessed a period where we stopped registering new cases, which were seen as mere exaggerations by NGO workers. It would only be registered if the district leprosy officer stamped his approval on each case,” he recalls. It was then that leprosy started to grow, off the tally sheets, in quiet unmonitored corners. “We eradicated the leprosy control programme, not leprosy,” he states.

Problem areas

Efforts are now on to detect new cases. Official records show that the government’s Leprosy Case Detection Campaign, which deploys over three lakh health care workers in a door-to-door campaign, resulted in 34,000 new cases being detected in 2016. These cases accounted for a fourth of new cases recorded in the latest 2016-17 NLEP report. A similar campaign has been underway since October this year and is expected to close by January. Twenty-two cases have already been detected in the capital. “Over the last three years, there is renewed vigour to incentivise new case detections across the country,” Dr Kumar states.

The recent NLEP report shows that Chhattisgarh, especially the Naxalite-affected belt, and Dadra and Nagar Haveli are new hotbeds of leprosy. “In Mahasammund, Chhattisgarh, in the last three months we’ve recorded 16 cases of untreated leprosy. Healthcare is poor and survey workers don’t reach the interiors,” says Vijay Kumar Behra, the Chhattisgarh head of Sasakawa-India Leprosy Foundation (S-ILF), an organisation facilitating the economic empowerment of the leprosy-affected in 15 states.

Mowa, just 6 km from the capital Raipur, recorded 20 new leprosy cases in the last two months, Behra says. “The residents in most of these parts have never seen the NLEP people,” he stresses.

Five more states and union territories that thought they had eliminated leprosy have seen the disease make a comeback. Odisha, Bihar, Chandigarh, Goa and Lakshadweep reported a prevalence rate greater than the elimination figure of 1 per 10,000 people on March 31, 2017. They are all back on the government’s radar.

Delhi, too, is home to a few high-endemic districts. A total of 1,812 new cases were detected in the national capital in 2016-17, compared to 1,145 cases in 2013-14.

Health experts point out that Delhi has a large migrant population that is on the move. So those diagnosed with leprosy do not always come back for a follow-up.

“When we identify a migrant with leprosy, the only thing we can do is counsel the individual and hand them the full course of medicines in good faith. There is almost no way to monitor course completion unless he returns to us, which is most often not the case,” says Dr Vimal Kaushal, district leprosy officer of South West Delhi.

Money matters

The so-called elimination of leprosy has had another fallout — a financial crunch in leprosy research and awareness campaigns. “Funding for research has dropped. We’re facing a shortfall in human reserves and trained medical professionals who can diagnose the disease correctly in its nascent stage,” says Dr Muliyil.

Dr Kaushal, for instance, is short-staffed and has a backlog of salaries to pay. He has often printed awareness pamphlets out of his own pocket. “For the last two years, we have not got funds to go to schools and community areas for awareness events,” says Dr Ritu Chaudhary, district leprosy officer, Central Delhi.

A second life: Yadavrao Andelkar lost his fingers and toes to untreated leprosy. He was made to flee his village in Maharashtra

Tackling leprosy largely hinges on early detection. ASHA (accredited social health activists) workers are supposed to help in spreading awareness about the symptoms and treatment and take patients to hospitals, but most affected people visiting public health centres say they had come on their own. Of the 370 cases under treatment at Safdarjung, for instance, records show that not one was brought to the hospital by an ASHA worker.

Awareness is key to ending the prevalence of leprosy. And awareness, experts add, is low across socio-economic strata.

Anatomy of a disease

 

Telling signs: Pyare Ansari’s first felt a loss sensation in two of his fingers and then saw patches on his hands

 

 

Leprosy is caused by the Mycobacterium leprae bacteria. It spreads through constant exposure to droplets of saliva or mucus from an infected person. The initial stages of infection are mild and can be fought by a healthy immune system.

“Over the course of a lifetime it is possible that several of us have, on multiple occasions, produced anti-bodies to fight single lesion tuberculoid, a form of leprosy which is self-healing in 80 per cent of cases,” says Dr Jayaprakash Muliyil, former principal of the Christian Medical College, Vellore, and ex-medical consultant to The Leprosy Mission International.

Constant exposure and living in damp or unhygienic conditions, however, can foster the growth of the bacteria and knock down one’s resistance.

The bacteria itself has a long incubation period. Once a person is infected, it can take 6-10 years (in the case of tuberculoid leprosy) or even 20 years (for lepromatous leprosy) for the first symptoms to surface. The symptoms take the form of skin lesions, patches, rashes or loss of sensation in any part of the body.

Most mistake the symptoms as a skin disease. But it attacks the human nervous system, leading to loss of sensation in fingers, toes, the periphery edges of the nostrils and eyes. An infected patient cannot feel the pain of a burn while cooking, the prick of a sharp stone or glass on their feet, or the sensation of dust particles entering their eyes. Over time, the injuries lead to surgery and amputation, which explains the myth of leprosy being seen as a disease that makes ones limbs fall off.

It could take two years for the first symptoms to manifest into grade II disability. That is why doctors stress the need for early detection. But detection is not easy, for a carrier of the bacteria is most infectious just prior to the appearance of symptoms. Multi-drug therapy (MDT), a daily tablet dose, can be administered for six months or up to one year, depending on the extent of the bacterial infection. Within the first month of medication, a patient loses over 85 per cent of the ability to transmit the disease.

Class no bar

“Leprosy has no respect for your status,” says Dr Muliyil. In 2017, actor Dimple Kapadia shocked her fans when she said she’d had leprosy. The disease was detected before the 1973 blockbuster Bobby was to be shot.

“Miraculously, I healed or else there would have been no Bobby ,” she recently revealed in an interview, but did not dwell much on how she had coped with it.

Because the disease is viewed as one largely afflicting low-income groups, the stigma against it in middle and upper middle classes is often hard to tackle. Dr Chaudhary states that when her team goes on awareness drives to upmarket neighbourhoods, the residents call their house help to be checked for skin patches, assuming the visit isn’t for them.

“Spreading awareness is tricky when it comes to the wealthy. We can’t exactly stick a leprosy poster in a high-rise,” she says.

Some of the more affluent patients get treated at private hospitals. “I have treated state-level government secretaries, too, for leprosy,” claims Dr RS Misra at the Sir Ganga Ram Hospital in Delhi. He adds that he sees a dozen patients a year. No private hospital is mandated to keep a record of the cases.

Clearly, while the disease can be tackled, dealing with the associated stigma is another challenge altogether.

“Why can’t leprosy be viewed as a skin disease that needs early detection, just like tuberculosis or cancer? We all know that it is perfectly curable if detected early,” says Dr Vineeta Shanker, director of S-ILF.

Some of the earliest records of leprosy are in The Bible: “‘Unclean! Unclean,’ the lepers (sic) would call out at passersby behind a veil that covered their nose and mouth”. ‘Lepers’ — as patients were derogatorily called until recently — lived far outside the cities in isolated settlements.

Fading out: The young and able move out of leprosy colonies, leaving the older generation behind

Even now, in large swathes of India, a leprosy patient is treated like an outcast. “ Ishwar ka shraap maante hai log (people believe it to be a curse of god),” says Behra, recounting instances of affected people being driven out of their villages and having their houses burnt down by the community.

India, experts believe, has to battle the disease more holistically. “Unless we redefine the treatment of leprosy to include the bacterial, immunological and sociological upheavals, we won’t make progress,” says Dr Muliyil.

Kerala leads the way

Some states are doing that. Kerala swung into action after detecting a bulk of leprosy cases from Thiruvananthapuram and Palakkad, among other areas. The state had reported 496 new cases last year and 520 so far this year.

To make people aware of the disease, the government decided to tap into their cultural imaginations. Superstar Mohanlal, singer KS Chitra and magician Gopinath Muthukad have been speaking to the people about leprosy. An entire episode in Uppam Mulugam , a popular sitcom, was dedicated to the disease and the state even saw a football match devoted to leprosy awareness in Malappuram. Social media highlights and forwards are breaking new ground in spreading awareness.

“We are leaving no stone unturned to detect every single case in our state,” says Dr Padmalatha, the state leprosy officer. The public response, she says, has been overwhelming.

Resistance and hope

If only Madhu Devi had been made aware of the disease early, back home in Bihar’s East Champaran district, she wouldn’t be in the predicament she is in today. She noticed her first patch a few years ago. Her husband, Bagheswar, who works at a factory in Manesar on the outskirts of Delhi, brought her to Delhi for treatment two years ago.

Tough fight: Undergoing treatment for leprosy, Madhu Devi has been showing signs of drug resistance

She has undergone a full MDT course at a private hospital but symptoms remain. She is now undergoing treatment at Safdarjung Hospital. “We are starting to see drug resistance. This is happening for those who don’t complete their course of medication or leave gaps in the treatment. We are putting more research into this,” says Dr Anil Kumar, echoing the worry of several insiders. NLEP reports confirm that while India saw 221 relapse cases in 2012-13, there are 536 such cases today.

The ASHA force could play an important role in stalling the infection early. Take the case of Maharani, an ASHA worker in Bindapur in west Delhi. Maharani, who goes by one name, detected a rather difficult leprosy case a week ago. The migrant labourer had no external patches, only a minor loss of sensation in his arm. “It took me four visits to convince him before he agreed to visit the nearest government health centre and get treated,” says Maharani.

Ansari, too nervous to ask the busy doctors questions about his illness, hovers near the office of Rakesh Kumar, the leprosy assistant at the hospital, for scraps of information and guidance on how to cope. Kumar counsels patients with friendly warmth. His phone lines remain always open, too.

“They need all the support to go through this. What we’re doing isn’t enough,” he says.

Love in the time of leprosy

Dare to love: Komal and Dhanpal’s marriage was a milestone for the colony

Dhanpal believes in love at first sight. He first met Komal at a neighbourhood dance class on the outskirts of Indore, not far from where they lived. She was in Std VII, but was already a trained dancer. So although he was seven years older, she was his senior in class. That wasn’t the only difference between the two. While Komal came from Govindnagar, a low-income residential area, Dhanpal lived in Sairam Avatar Kusht Ashram, a leprosy colony. Social stigma forced his family to flee Maharashtra and arrive at Indore to be treated at a leprosy hospital. Dhanpal’s father had passed away. His mother was cured. Although he was never affected, the mere mention of where he lived usually derailed any ideas of love and romance.

In leprosy colonies, marriages were, and still are almost always arranged. Rishta or marriage proposals come from other colonies near and far. But love with an “outsider” was unheard of.

Komal wanted to study, not just finish school, and become a college lecturer. But her large family — three brothers and two sisters — couldn’t afford it. Dhanpal connected her to Sarang bhai, a community leader with S-ILF. He instructed Komal to take the admission test at a Christian residential school in Bhopal; she earned a full scholarship, sailed through school and college, and attained a Master’s degree in computer science.

Dhanpal, a school drop-out, helped Komal pursue her dreams. They still danced together and even prepared kids for school functions in their neighbourhood. But both knew her education was the priority. “Komal is more educated than anybody else in Indore’s leprosy colonies. She’s so bright,” beams Dhanpal.

“I was taught to always hold my head high and meet people’s gaze,” says Komal, and that is what she did when it came to convincing her parents for the marriage. Her father worried if she would contract the disease by living in the colony. Will their children get the disease, he wondered. “I asked them what they were afraid of. There were no untreated cases in his family. Plus, does cancer or tuberculosis announce its arrival? If leprosy happens, let it. With early diagnosis, cure is assured,” says Komal.

Dhanpal and Komal have been married for two years. Komal has since moved into the colony; it’s 14 months since their daughter was born, nine since she joined S-ILF as a social worker and a month since she brought a rishta from the colony for her cousin sister, who lives outside.

Thirty-five-year old Dhanpal drives a tempo. “He tells me to work and study as much as I want while he takes care of our daughter,” says Komal.

In a matter of months, 28-year-old Komal has bettered the lives of 40 families living in the congested colony by helping them get BPL cards, job cards, finding them employment outside the neighbourhood, and protesting in Bhopal for pensions for those affected by leprosy.

“We had to think beyond cure. Social stigma is the biggest barrier for those living in colonies. We worked closely to battle discrimination and expose the younger generation to the outside world. Several of them are successful professionals today in the fields of hospitality and healthcare,” says Tehseen Zaidi, communications manager at S-ILF.

The story goes that Rohei Sasakawa, founder of the Japanese Nippon Foundation, was in love with a Japanese woman in his village. He left for Tokyo to study and promised her that he would return. However, when he returned a few years later, she had disappeared from the village. He found out that she had contracted leprosy and had been sent to the sanatorium for leprosy patients. Like the rest of them, she too wasn’t allowed to marry outside or have children. He made a promise to himself that he would find a cure for leprosy and end the practice of segregation. Through the Nippon Foundation, which he founded in 1962, Sasakawa has helped distribute the multi-drug therapy, or MDT, through WHO to 122 countries in five years. He also fought to ensure that discrimination against leprosy patients is considered a violation of human rights. S-ILF began from a corpus grant given by the Nippon Foundation and is run by his son Yohei Sasakawa. Rohei is no more.

Over 6,000 km away from Japan, on the outskirts of Indore, Komal and Dhanpal’s love story would have made him proud.

 

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