In August, when Rashmi, an accredited social health activist in Dapada village in Dadra and Nagar Haveli, visited the Kankad family, she could not believe that 11-year-old Sameer had developed a white patch on his right thigh around which he had no sensation. Sameer was the third member of the family to develop this telltale sign of leprosy.

A few weeks before, his grandfather, 55-year-old Shidvu, had been diagnosed with leprosy. During a door-to-door survey conducted by the health department to screen for leprosy cases in the village, Rashmi had found a white patch that almost covered Shidvu's back. A year ago, Sameer’s sister Tejal who is 14, was diagnosed with leprosy after a health activist visiting her school found a white patch on her forehead.

Rashmi was disappointed that the family had not alerted her to the pattern. "It was only when I went to their house, they told me that Shidvu also has a white patch like Tejal,” said Rashmi, who does not call the disease leprosy. At Dadra Nagar Haveli, field health workers call it safed chate ki bimari or white-patch disease. “I think the disease is in their family.”

Even as India eliminated leprosy in 2005 by bringing the prevalence of the disease to less than one case per 10,000 people, the Advasi-dominated Dadra and Nagar Haveli has been unable to eliminate the infectious disease commonly associated with gnarled hands and feet. Dr Manoj Singh, who is in charge of the leprosy programme in the region, had no explanation for the high prevalence of the disease among the inhabitants of the sparsely populated Union territory. “Perhaps, we are detecting more cases or it’s just that leprosy is not ready to leave us,” said Singh, who after looking at his monthly reports admitted that the prevalence has climbed. “We have 7.6 leprosy cases for every 10,000 people living here.” The Union territory has the highest prevalence of the disease across all states and union territories in India.

Leprosy, also known has Hansen’s disease, is spread by a Mycobacterium leprae and transmitted from human to human. It is spread by coughing and sneezing but is not very contagious. However, scientists are still discovering the bacterium's many routes of transmission.

Both Singh and Rashmi feel that there is some strong association between leprosy and natives of Dadra and Nagar Haveli. Since April this year, Rashmi and other accredited social health activists like her have identified 303 people with the disease. The World Health Organisation-recommended Multi-Drug Therapy is given to any person immediately after a dermatologist confirms the disease by performing a laboratory investigation and a biopsy in some cases.

“Once they take the first dose of medicine, the load of the bacteria drops drastically in them, making them less infectious,” said Singh. “Any person on treatment is not a worry for us as they are not transmitting the bacteria to others in their vicinity. We are worried about patients who are infected and not showing signs but shedding the bacteria in the community, infecting others.”

As Mycobacterium leprae is a slowly multiplying bacterium, doctors said that a person infected with it might take anywhere between five to 20 years to exhibit symptoms of the disease. Most people infected with the bacteria develop patches on the skin. Others develop sensation loss, numbness and a loss of movement in their hands and legs.

Elimination, not eradication

Six out of ten new leprosy cases recorded worldwide are from India, according to World Health Organisation. About 12.5 lakh Indians were diagnosed with leprosy between April 2014 and March 2015 as per the National Leprosy Eradication Programme.

To address the problem of undetected leprosy cases, the Union health ministry in September launched a leprosy case detection campaign across 19 states and Union territories. The initiative aims to screen 32 crore people for the disease.

“We have selected those districts where the prevalence is more than one case per 10,000 population,” said Dr AK Puri, assistant director general of the National Leprosy Eradication Programme. “By detecting cases early, we will be able to stop the transmission as well as avoid cases with deformity.”

If a person with leprosy is not put on a treatment regimen immediately after the symptoms surface, the bacteria has the potential to damage the person’s nerves, leading to crippled hands and legs, said doctors.

But the ministry’s call for a nationwide screening campaign comes too late, activists say. In 2005, when India declared that it had eliminated leprosy, it only meant that leprosy was no longer a public health challenge. However, with the elimination goal achieved, the country's leprosy-control programme was integrated into the general healthcare system and this allowed cases to fall through the cracks.

“Before the integration, there was an active surveillance for case detection,” said an official from a non-profit working for leprosy patients. “Once the active surveillance stopped no one bothered about detecting leprosy patients which lead to many hidden or undetected cases.”

Leprosy has been so sidelined that recent medical graduates cannot distinguish between leprosy and other skin diseases. The new generation of dermatologists is focusing on cosmetic treatments and few of them have seen a leprosy case, which makes them ill-equipped to diagnose one, said a senior doctor working with a medical college in Maharashtra.

“Leprosy is not like your tuberculosis and chikungunya and it is difficult to diagnose,” said, Dr Shawkat Ali, director of the Central Leprosy Teaching & Research Institute in Kanchipuram district in Tamil Nadu. “It is not right but I will have to accept that doctors don’t know how to diagnose the disease anymore.”

Ali said that because of the stigma attached to the disease, doctors don’t want to tell a patient that he or she has leprosy. “Even if they have a suspicion, [doctors] don’t bother to confirm it," he said. "An untreated case of leprosy can spread the infection to several individuals and because of its long incubation period, it is difficult to trace when and where exactly was a person infected.”

Tribal population more susceptible?

Senior plastic surgeon Dr Atul Shah from Sir JJ Hospital in Mumbai, who has been visiting Dadra and Nagar Haveli to perform surgeries on patients who have developed deforminities, says there is clearly a need to study why leprosy is endemic to this area. "Probably, they have low immunity because of their food habits making them vulnerable to the disease,” said Shah.

Another theory that doctors are split about is that the infection is not just spreading from person to person. “It is perhaps in the soil and water here,” said Rashmi.

A study by Colorado State University has, in fact, found that leprosy-causing bacteria can survive for months in amoeba hosts that are common in water and soil. The study could provide some insight on why leprosy transmission continues even when most people detected with the disease are administered medicines that make them less infectious to those around them/

“So far, we only know that the only possible route of transmission is from human to human," said Kumar from Post Graduate Institute of Medical Education and Research in Chandigarh. "The disease has a long incubation period and we put patients on treatment only when they develop symptoms. There is a period when they don’t have symptoms but are carrying the bacteria and perhaps transmitting it to others.”

Ali is in the process of conducting a study to establish the association between leprosy and the Adivasi population. “People have been talking about this association but there is no proof," he said. "We need to debunk or establish this theory because it is an easy thing to blame a community.”

Difficult to find

Senior doctors who have worked closely with the government during the elimination programme blamed the surge of new leprosy cases on the decision to stop searching for people with the disease. Besides, as Ali points out, “camps have their own limitations”. He said, “The health worker will see only 40% to 60% of the patient’s body area for a visible white patch. They can’t ask every person to get naked and examine their body, it is not practical.”

In fact, when went along with ASHAs and male volunteers who were screening patients, every team had a different strategy. While some health workers asked the people to report whether they had white patches, others actually examined people's bodies for patches.

Leprosy awareness camp at Dapada village in Dadra and Nagar Haveli. Photo: Priyanka Vora.

Surveillance is tough. "Owing to the stigma attached, villagers do not always agree for an examination,” said Hasmukh Patel, a paramedical worker who has been detecting leprosy cases in the community for the past three years. “Also, we are spending more time making reports then actually going in the community.”

Patel said another challenge is that many Adivasis have found in factories. "The are never at home," said Patel. "They leave before sunrise and only come back in the late evening when screening cannot be done because there is no electricity. Sometimes we go in the night and use our mobile light to look for patches.”

Finding protection?

When a disease remains within a population and keeps resurfacing despite various treatment mechanisms, the only solution is to protect people against it. In a bid to protect residents from leprosy, many regions including Maharashtra and Dadra and Nagar Haveli have decided to administer Rifampicin, a drug used in the multi-drug therapy to treat patients detected with the disease. “We are giving all close contacts a tablet of Rifampicin which can attack the bacteria in case they have got it,” said Das.

However, Kumar says that this Leprosy Post Exposure Prophylaxis is futile. “There is no consensus on the role of such prophylaxis," he said. "The drug will be out of the patient’s body in a day or two and what if the patient gets infected after taking Rifampicin?”

To break the chain of transmission, a single dose of Rifampicin was found to be 57% to 60% effective in prevention of occurrence of disease in contacts of leprosy patients in studies in Indonesia and Bangladesh, said Dr MA Arif, country director of Netherlands Leprosy Relief India. "We presume that it will also have impact on reduction of occurrence of new cases, which will take some time," he said.

But Rifampicin is also used for treatment of tuberculosis. “By giving such high-end drugs to people as a protection, what we are doing is making them more resistant to the medicine,” said a senior doctor in Mumbai.

One ray of hope is a pilot project by the Indian Council of Medical Research to test the efficacy of the vaccine prepared by the National Institute of Immunology in New Delhi. “If the vaccine works, eradication will not be an impossible goal,” said Kumar.

This is the first of a series on leprosy in Dadra and Nagar Haveli. You can read the second part here.

This reporting project is made possible partly by funding from the New Venture Fund (NVF) for Communications project, which receives support from the Bill & Melinda Gates Foundation.