'That is, to be a leper was to be treated as dead -- to be excluded from the city as a corpse; to be spoken to by the best beloved and most loving only at a distance; to dwell with none but lepers; to be utterly unprivileged; to be denied the rites of the Temple and the synagogue; to go about in rent garments and with covered mouth, except when crying, "Unclean, unclean!" to find home in the wilderness or in abandoned tombs; to become a materialized specter of Hinnom and Gehenna; to be at all times less a living offence to others than a breathing torment to self; afraid to die, yet without hope except in death.

—From 'Ben Hur: A Tale of the Christ', by Lew Wallace

An exhausted teenager, who can barely keep his eyes open, sits in a long line outside The Leprosy Mission Hospital (TLMH) in Shahdara on the outskirts of Delhi. Another elderly man,white-haired, sits alongside him. The only things they share is their line of work – they are labourers – and that they both carry Mycobacterium Leprae, the bacteria that causes leprosy, which is once again rearing its head across the country.

17-year-old Girdhari Kumar's skin has broken out into hundreds of nodules, little lumps that protrude from under the skin. Orphaned when he was in the fourth grade, Kumar fled his Chattisgarh home and laboured in Odisha before migrating to Chennai to work in a yarn factory.

"These nodules have emerged a few weeks ago," he says, holding out his claw-like fingers which, slightly bent, have stiffened, preventing him from holding things firmly. "My hands are losing flexibility, which makes it impossible to work in a yarn factory." The infection has spread to his eyes, explaining why he can't keep them open for long and his failing eyesight.

Kumar had been treated for leprosy in Chennai but went off his medication after eight months due to the side-effects. "Erratic treatment will only worsen the case. The curative effect rendered is zero," said the doctor who was tending to him.

Return of the L-word

Kumar is just a number in a larger, worrying dataset. Leprosy is back in India, this time with renewed vigour and fewer obstacles.

In 2005, the Indian government declared the disease – once rampant, with lepers begging at traffic signals and outside temples an all-too familiar sight – had finally been eradicated, meaning there was, on average, less than one case per 10,000 persons.

Only a decade later, in 2015-16, India has 1,27,326 cases, an increase of1.22% from 2014 – 15.

"India is far from eradicating leprosy. The number of new case detectionsand disabilities are on the other hand increasing," says Dr Vineeta Shanker, Executive Director at Sasakawa India LeprosyFoundation, New Delhi.

Accordingto the Ministry of Health and Family Welfare data, cases of Grade II or permanent disabilities due to leprosy have been on the rise over the past decade. In 2007 – 08, 3,477 casesof disability were recorded, rising 68% to 5,857 cases in 2015-16.

At about 60%, India reports the highest number of new new leprosy cases in the world. The Indian Council of Medical Research (ICMR) estimates that actual cases could be as many as 2.5 -4 times higher than the current reported figure.

"At national level, having achieved elimination ... does not necessarily mean that eliminationhas been met at state-level, district-level or at the block-level. This is because the active search mechanisms in the country are currently not robust," concedes C K Mishra, additional secretary (health).

"Hidden cases are not reported to the government. The first point of contact for patients with skin problems is the village quack. Some take over-the-counter (OTC) drugs in a bid to self medicate, some go to private practioners," says Dr Shanker.

Many such cases are hidden in the community and may often go unreported for the lack of active surveillance.

For example, In March and April earlier this year, as a part of the Leprosy Cases Detection Campaign (LCDC), one male and female worker went to each house in 50 high-burden districts of India, screening all its members. "Of the 65, 427 suspects screened, 4120 cases (over six per cent) cases of Leprosy were picked up," said asenior health official in the ministry. "The active screening picked up more cases than could have been reported in a passive scenario by health workers to the local governments and from there on at the state or central levels."

And therein lies a tale of jumping the gun.

PREMATURE CELEBRATIONS

The so-called vertical programme that the government used to find and treat leprosy was disbanded in 2005, after the celebratory news about 'elimination.'

The programme, which had a special cadre of medical officers, was disbanded. Health officials now say the government believed it did not have to pay attention to leprosy any more. The National Programme for Leprosy Elimination (NLEP)reeled from an acute staff shortage. There were no longer as many experienced medical officials on the field. Not surprisingly, the rate at which active cases were picked up by the health workers also fell.

Doctors at the block-level primary health centres who specialised in leprosy were abruptly pulled out of the programme and deputed to other activities like ante-natal services, malaria and dengue control.

"Vehicles designated for the leprosy programme were taken away. After thegovernment stopped making available vehicles, we could not trace leprosy patients in the villages around the block," said a former doctor with the programme, declining to be named for this article.

Leprosy was no longer a priority ite, and 'elimination' soon became an eyewash. "We were too quick to pat ourselves on the back. All the cadres of the vertical programme for leprosy were disbandedand reallocated to other departments in the government," said this doctor.

"It looks like because the government was forced to achieve targets, it could not focus on recording new cases. The whole procedure of achieving 'elimination,' numbers is flawed. The government has now admitted that there are hyper-endemic districtsand further down hyper-endemic blocks where (the) prevalence of leprosy isshockingly high," said Dr Shanker.

However, the allocation of budget towards tackling leprosy remains dismal, rue health officials. Over the past two years, the annual allocation has stagnated at Rs 46 crore, which only suffices for arranging screening campaigns.

This means patients who are now free of infection but have been wounded with permanent disabilities are neglected. They tend to develop wounds and ulcers over and over again if they donot wear micro-cellular rubber (MCR) footwear, which the government outsources from The Leprosy Mission Trust, India (TLMTI). But there is no data on how many past patients are disabled and need the footwear.

"We have seen an increase in cases with disability due to leprosy, whichis a cause of worry. There is also a high degree of infection amongst children. Those cases which are not detected early and are presented late result in permanent disability," admits C K Mishra, additional secretary (health).

Worse, the government is clueless about individual needs of a patient. For example, the shoe size for a leprosy-affected patient in both feet can vary. Such customised orders are not placed with TMLTI. As a result, the footwear that ultimately reaches a patient'shome is unfit for use.

Exhibit A: 90-year-old Channabha, in remote Kaparada block of Valsad district in Gujarat. A closer look at his extremities shows they have been melted and severed by the disease, leaving him with stumps where fingers once were. He does not wear the protective footwear that the state government provided him. The rubber sandals hang precariously on a nail in his 100 square feet hut, unfit for use. Nor does anyone ever visit him to check on him.

"For the government, this is all a play of numbers. For them money spent on buying footwear is work done," says a technician at TMLTI workshopin Shahdara, New Delhi. "They record having supplied the footwear to the patient for showing in the books that the allocated budget has been utilised. That is the end of the story. It does not matter to them if the footwear is fit for use or not."

Dr Anil Kumar doesn't quite agree. "With low budgets, our priority is prevention through screening for new cases. We need higher budget to focus on salvaging the already disabled," he retorted when asked about thefutility of footwear made for disabled patients.

SETBACKS GALORE

Stymieing efforts at detection and prevention further is the fact that, like TB, the leprosy bacteria has also evolved. Scientists at the Stanley Browne Laboratory in New Delhi are stumped at the increasing number of patients who have stopped responding to drugs.

Under the World Health Organization's (WHO) global surveillance programme launched in 2008-09, up to 250 suspected cases of drug-resistance were tested at the laboratory. Of the 250 suspects, 76 were reported to have become resistant to multi-drug therapy (MDT) drugs or first line treatment. Of those, 36 were non-responsive to Rifampacin, 20 to Dapsone, and 20 to Ofloxacin, according toscientists at Stanley Browne Lab. The three drugs are administered immediately after detection.

Up to seven patients - six from Chattisgarh and one from New Delhi – have even acquired 'primary resistance' to MDT drugs, meaning they were infected by the drug-resistant strain of 'Mycobacterium Leprae,' from the get-go.

Other patients have acquired 'secondary resistance' after completing 6 - 12 months course of MDT. They gradually turned drug-resistant while on treatment, were not cured of their infection and continue to spread the disease.

"After the failure of such patients to respond to MDT or first-linetreatment, they are now being administered another year-long treatment course of second-line drugs - Minocycline, Ofloxacin andClarithromycin," explained Dr Sunil Anand, executive director, TMLTI. But he cautioned that it will likely take another two years to understand if second-line drugs are working.

A STAB OF HOPE

A shot in the arm, literally, could help patients fight the disease. Starting November, the central government will roll out the world's only vaccine on a pilot basis in Gujarat and Bihar, two of the 19 worst-affected states. The vaccine was developed by Indian scientist Gursaran Talwar (90), close to eight years ago and is currently manufactured by the private sector. The vaccine has been approved by Drug Controller General of India as well as the US Food and Drug Administration (FDA).

"Six worst affected districts – four in Gujarat and two in Bihar – have been shortlisted for thevaccine trials. Of these, the districts in Gujarat include Navsari,Narmada, Tapi and Bharuch. In Bihar, the vaccine will be rolled outin Jamui and Banka," said Dr Anil Kumar, deputy director general (leprosy), Ministry of Health and Family Welfare.

In the 1970s, the World Health Organization (WHO) approached Talwar to work on developing a vaccine when he was at All India Institute of Medical Sciences (AIIMS) in New Delhi. "India at that time had the highest number of leprosy-affected patients. I accepted their offer to research to find a cure," he recalls. As a part of his ground research, Talwar frequented colonies inhabited by patients to understand how people got infected in the first place.

Talwar and his team collected atleast sixteen known and unknown bacteria to see of any of them could counteract the effects of M. Leprae. "This resulted infinding a non-pathogenic, human-friendly bacteria coded as MW. It was coded such as its records were unavailable in the World DataBank. We later named it 'Mycobacterium Indicus Prannii,' or MIP. Indicus stands for India. Pran is my name and NII stands forNational Institute of Immunology, where the vaccine was developed,"said Talwar.

During the course of clinical trials, MIP was also tried on patients who had already contracted leprosy, and was found to have a curative effect. "During the clinical trials it was observed that the vaccine proved to be effective inexpediting and accelerating the effect of drugs in patients. It hascured patients of their lesions and wounds in a remarkable way. The administration of MIP rendered the patient as of he had never had leprosy," said Talwar.

Apart from leprosy, MIP has also found use in treating drug-resistant tuberculosis cases.

The National Institute of Immunology had carried out field trials of the vaccine in 24,000 subjects, between 60% and 70% of whom were found to be protected against leprosy for 4-8 years.

Interestingly, the government had rejected Talwar's proposal to roll out the vaccine under the national prevention programme over a decade ago.

Since the past eight years, the prevalence of leprosy has plateaued. "There was no dip in the newly detected cases (while) Cases of disability are only increasing. We are looking at all possible options including thevaccine to control the infections," said Dr Anil Kumar.

"We are looking at comparative analysis to study the efficacy of the vaccine versus the Rifampacin-based chemoprophylaxis drug treatment so that we can derive better methods to tackle the disease," said Dr Soumya Swaminathan, director, Indian Council of Medical Research (ICMR).