THE METHOD FOR repairing a hand clawed by leprosy is a bit like restringing a broken marionette. The skin is parted at the joint of a finger, along the equator of the palm and at the ball of the thumb to reveal the flexor tendons—smooth and pearl-coloured, a bit like the bands of nylon that sometimes joint a puppet. The tendons are split, snipped and spliced into new configurations in the pulley-like rigging of the hand, redistributing the crippling force of a musculature wrecked by nerve damage. The operation is a beautiful, intuitive piece of mechanics. A deft surgeon with a well trained staff can get the job done almost bloodlessly in about half an hour. In the best case, the wrecked hand returns to near-normal function and, often as importantly, a perfectly unremarkable appearance.
Long before 23-year-old Sunita Gorh was wheeled into the operating theatre of the Catholic Hospital in Borgang—a village in Assam’s Sonitpur district—in March this year, it was clear that her outcome would not be best case. Gorh was almost too far gone to even qualify for the procedure. The backs of her hands were perpetually tensed; her fingers folded down tightly at the joints. Without proper care, the “contracture” had stiffened, and it was now difficult for her to straighten her fingers even when she braced the tips against a firm surface. Septic ulceration had years ago crumbled away bone and left her right index finger stumped at the second digit. Her cosmetic prognosis was bad: her hands would never look normal again.
But the medical team in charge of her care hoped that crucial movements could be salvaged. To be given back the ability to point, to draw the fingertips together in a pinch hold, to pull the thumb out of alignment with the rest of the fingers and across the palm, could mean the return of vital capabilities: eating unassisted, counting out currency notes, holding a pen, tapping a message into a mobile phone, sowing or harvesting a crop. It could mean the difference between an active life and one of dependency and destitution.
Claw hands are the commonest kind of visible disability caused by leprosy, but there are others, typically affecting the feet or eyes, sometimes the nose. Collectively, they are called Grade 2 disabilities by people in the leprosy-control field. In 2019, a G2D is a tragedy of healthcare. Each clenched-up claw hand, dragging dropped foot, hanging eyelid or clouded eye blinded by leprosy could have been prevented by timely treatment.
The window to do so is not small—leprosy is a slow bug. It moves slowly through populations, because the vast majority of people are not susceptible to it, and it moves slowly through bodies. Disabilities like Gorh’s can take more than twenty years to develop. The World Health Organisation assumes an average incubation period of five years between exposure and observable symptoms. Moreover, the drugs that reliably kill Mycobacterium leprae, the bacterium that causes the disease, have been available since the early 1980s. In 1995, the WHO began to offer the treatment protocol—a regime of rifampicin, dapsone and clofazimine, called multi-drug therapy, or MDT—for free to all leprosy patients worldwide.
It was about a year later that Gorh was born in the Samaguri tea plantation, where she still lives. Her parents both pick tea for a living, under the precarious designation of “temporary labour,” and her younger brother recently joined them at work. Her disabilities have made it impossible for her to contribute to the household income, a fact that was weighing on her mind when I met her, in the sunlit, white-tiled ward where she waited for her turn on the surgeon’s table. “I want to work, for myself and for my family,” she told me. With a kind of bewildered frustration that called to mind an athlete benched before the big game, she said, “I want to do something with my life.”
That stifled ambition was why Gorh had made the eight-hour bus journey to Borgang a few days earlier. Reconstructive surgery was her last chance to roll back some of the damage done by the rotten luck of contracting leprosy, and the worse luck of being born the kind of person so obscure to the healthcare system that the window of disability prevention may as well have been hypothetical.
In person, Gorh was anything but easily overlooked. A slight young woman with wiry hair knotted in an unfussy braid and a boyish set to her shoulders, she had a hard-nosed magnetism that reminded me of rifle-toting frontierswomen in old westerns and an appraising gaze that did not soften even when she smiled an ironic, lopsided smile. I liked her immediately. I asked her how she was feeling, expecting some expression of hopefulness. She held up her deformed hands—the right one was wrapped in sterile materials, ready for surgery—and turned them slowly for me to admire, as if to say: how would you feel? Then she laughed—a reprieve, for me, as I had begun to stammer—and told me she was “a little scared” about the procedure and “a little excited too, for getting better.”
For a long time, Gorh had no idea that the injuries that had begun to appear on her body were symptoms of an infection. First, she told me, it was just a blister on the sole of one of her feet that would not go away. She struggled to remember when the blister had appeared; she guessed she was around seventeen years old at the time. Her father took her to a pharmacist, who prescribed an ointment that proved useless against the lesion.
Her symptoms progressed. Gradually, her extremities became numb, making it difficult to protect them from injury. Ulcers bloomed on her hands and grew infected, so she held her fingers curled to shield her sores. When she stopped being able to hold a pen, she dropped out of school. Her family sought help from a local baba, who sacrificed a rooster and a pair of doves to placate malicious spirits. They consulted the tea-estate medic, a private healthcare facility and a rural dispensary, all without relief. Their frightened neighbours turned on them, pressured them to leave and even blocked their access to the communal well. During the hardest months, Gorh wanted to die.
By the time she finally learnt the word “leprosy,” at a government hospital in Jorhat, approximately three years had passed. The original lesion on her foot was still unhealed. She was administered the 12-month MDT course and pronounced “cured.” But her disabilities—her numb limbs, her stumped and crunched-up fingers, her scar-tissue-thickened feet—were there to stay.
HUMAN SOCIETIES have lived with leprosy for a very long time. The skeleton of a man who was buried in Rajasthan in the second millennium BCE shows signs of the ravages of the disease, and genomic research suggests that leprosy-causing bacteria were carried in the bodies of humans leaving Africa a hundred thousand years ago. Texts from ancient Egypt and India contain accounts of a sickness that resembles leprosy and, after the armies of the Macedonian king Alexander returned home from South Asia, leprosy began showing up in ancient Greek records, too. The Bible paints leprosy as a kind of spiritual impurity, and colonial Indian law framed the affliction like a crime: the Lepers Act of 1898 allowed a police officer to “arrest without a warrant any person who appears to him to be a pauper leper” until it was repealed, in 2016.
For a disease that we have been trying to describe and contain for millennia, leprosy remains weirdly mysterious. In part, this is because M. leprae refuses to be cultured in test tubes, which means that the only venues for studying the pathogen are the living bodies of sick people and the foot pads of mice. There is no simple diagnostic test for pre-symptomatic infection, and no truly effective vaccination.
Nearly a century and a half after the Norwegian physician Gerhard Hansen discovered M. leprae, in 1873, its mode of transmission remains imperfectly understood. Scientists believe that the primary means of communication is through airborne droplets exhaled by sick people, but infection via armadillos has been confirmed in the United States. Whether the pathogen is harboured in soil and water, or passed along by insects, remain open questions. Why leprosy clusters the way it does is also incompletely resolved. Environmental variables such as sanitation and diet matter, which might explain why leprosy thrives amid poverty. But there also appear to be genetic factors that make some people more predisposed to infection and others more resistant.
Today, over two hundred thousand people are diagnosed with leprosy every year, and India contributes more than half of those cases. “If you compare with ten years ago, or twenty years ago, we have made major progress,” Dr Erwin Cooreman, the team leader of the WHO’s Global Leprosy Programme, told me, when we met, earlier this year, at the organisation’s regional office in Delhi.
As recently as 1985, the WHO recorded 5.2 million patients in treatment for leprosy. Then came MDT. The new drugs were good—not just reliable, but quick. Patients administered MDT were assumed cured after two years of treatment, instead of the minimum five years under the old dapsone-only regime. (MDT is now prescribed for either six months or a year, depending on the severity of the symptoms.) Millions of patients were treated and expunged from the rolls in short order. Between 1985 and 2001, the global prevalence of leprosy plummeted by 89 percent.
However, Cooreman said, during the past ten years, “we observe a kind of stagnation—that the number of new cases is not further reducing, or only reducing at a very slow pace.” On a graph of India’s leprosy-prevalence rates over the past twenty years, a kink appears right at the year 2005–06, after which the slope of decline flattens out.
It was an important year for Indian leprosy control. In May 2006, at a global leprosy forum in Geneva, Dr Anbumani Ramadoss, the health minister at the time, stood and made an announcement: “It gives me great pleasure and satisfaction to report that India has met the challenge of its Health Policy, 2002 and the World Health Assembly resolution of 2001 to achieve the national elimination of leprosy, as targeted, in December 2005.” Although he cautioned that elimination was an “intermittent goal,” the mood was ebullient. “I am confident that India will achieve leprosy eradication in the next ten to fifteen years,” he said.
The leprosy experts I spoke to, however, saw this moment of self-congratulation as a misjudgement—as a miscommunication that had the unintended, but predictable, effect of bringing the leprosy-control machine to a sputtering halt.
“We never declared ‘elimination,’” Cooreman told me. “We said, ‘elimination as a public-health problem.’ It’s a bit of a confusing thing.” Confusing, because “elimination” has a seductively final ring to it. Media reports frequently, and erroneously, refer to India having been declared leprosy-free. In fact, “elimination as a public-health problem” describes a much more narrowly qualified achievement. According to the World Health Assembly’s 1991 articulation of the term, a population qualifies as having arrived at “elimination as a public-health problem” when it has fewer than one in 10,000 people in treatment for leprosy. The rationale for the figure was that at this threshold of prevalence, transmission rates would start to wane on their own, but this was a prediction based on expert surmise rather than on robust mathematical models. “The number was not scientifically underpinned,” Cooreman said. “It could have been true in some settings, but not everywhere.” In India, at least, where leprosy tended to occur in clusters, it would prove to be incorrect.
More troublingly, in the years since the one-in-10,000 target was declared achieved, researchers have raised doubts about the methods resorted to in the rush to dip across that finish line. In the run-up to the deadline, India “moved to voluntary reporting and stopped actively seeking new cases and screening contacts,” according to a 2014 paper, published in the British Medical Journal. Between 2003 and 2005, detection rates fell by three quarters. But, as the paper said, “many players questioned the leprosy figures.”
In September last year, I met Dr Vanaja Shetty, one of the authors of the paper, in her laboratory at the Foundation for Medical Research in Mumbai. In 2008, Shetty, a biologist who has been working on the pathology of leprosy for nearly five decades, was conducting research at a primary health centre in Maharashtra. Leprosy had been declared eliminated, but “there was no decline whatsoever” in the number of cases she was encountering at the PHC, she recalled. “We were seeing more multibacillary cases, delayed presentation, high-grade deformity,” she told me. (“Multibacillary,” as opposed to “paucibacillary,” refers to cases with more severe symptoms.)
Part of what went wrong during India’s pursuit of elimination status, Shetty said, was structural. After the advent of MDT, the country’s specialised leprosy-control organs were “integrated” into the general healthcare system. Its workforce and responsibilities were broken up and parcelled out into the broader structures of public medicine. PHCs like the one she was working at in 2008 were now at the front line of leprosy care. In many cases, she found, they did not make leprosy a priority and found themselves ill-equipped to deal with a disease that can be tricky for unpractised healthcare workers to diagnose in its early stages. Experts I spoke to thought that integration was not a fundamentally bad idea—in theory, a curable disease such as leprosy should not be siloed—but that its execution was shoddy and ill-timed.
Shetty also encountered evidence of deliberate blindness. Fieldworkers in Maharashtra told her they had been quietly instructed to omit from their leprosy records patients with only one lesion. There have been similar reports about the exclusion of patients over sixty years of age from the official record. To gather epidemiological evidence of what she was seeing in the PHCs, Shetty’s team conducted two surveys. They found that the detection rate for new cases “was five to ten times higher in some areas than what was recorded,” she told me. “In some areas, it was almost as high as twenty times. There were so many of what they call ‘hidden cases.’”
Dr VV Pai, who heads the Bombay Leprosy Project, a non-profit research-and-referral centre, described the post-elimination period as characterised by “a complete sense of complacency.” Only those who presented themselves at clinics with symptoms were treated, he told me. “Therefore, there lived a big reservoir of infection. That continued, and continued, and multiplied.”
Over the next ten years, the misgivings of leading leprologists—who had, at symposia and in journal articles, warned of the unintended consequences of prematurely declaring victory over leprosy—were borne out. Funding for leprosy control dried up. Who, after all, pays to solve an eliminated problem? “It happened in a lot of countries,” Cooreman told me. “We are victims of our success, and we may have been bad communicators, not explaining sufficiently what it means: ‘elimination as a public-health problem.’”
IF THE WORLD’S LEPROSY PROGRAMMES fell victim to their own success, then patients like Sunita Gorh who vanished into the system’s growing blind spot were collateral damage. The fallout was extensive: by the government’s own count, during the decade after 2005, nearly fifty thousand new patients were found to have visible deformities from progressed leprosy.
In September 2015, Dr Anil Kumar, an epidemiologist with a professional zeal for data, took charge of India’s National Leprosy Eradication Programme. Looking at the NLEP’s figures, he spotted another, even more disquieting, trend behind the mounting tally of leprosy patients. While the new-case detection rate had remained more or less steady for a long time, the proportion of visible deformity among new cases was rising fast, from 1.87 percent in 2005–06 to 4.61 percent in 2014–15.
“This graph was nowhere available,” Kumar told me in tones of disbelief, on a muggy day last summer at his office in Delhi, gesturing at his computer screen. To him, it seemed clear that the percentage of G2D was the most important indicator of the effectiveness of the leprosy programme. A high proportion of G2Ds proved that surveillance systems were faltering. “It is difficult to hide Grade 2 disability cases,” he explained. “Once a person is having disability, he has to go somewhere. He cannot sit at home.” Unlike early-stage symptoms, which can look like a minor skin ailment to medical officers who lack experience with leprosy, a claw hand, like Gorh’s, is unmistakeable to anyone even passingly familiar with the disease. The rising G2D rate was like a siren, signalling that there were growing numbers of undetected sick people out there, at real-time risk of life-changing deformity.
To Kumar’s mind, the fundamental problem was that the epidemiology of leprosy had been poorly understood by decision makers used to fast-moving epidemics, in which decisive public-health interventions can have an almost immediate effect on incidence. Leprosy is different. Its long incubation period means that in places where it is endemic, there are cohorts of pre-symptomatic patients waiting in the wings. A sustained, penetrative searchlight is the only way to find and cure them as they become detectable. “In a short period of time, you cannot bring down prevalence,” Kumar told me. He told his colleagues and his bosses, “I also want to bring down the numbers, but to bring down the numbers I have to first bring up the numbers.”
Kumar set about righting the ship. “This was my first message after joining, and analysing the data: ‘Detect as many cases as possible. You will not be punished,’” he told me. The NLEP entered campaign mode. In 2016, it carried out a 14-day house-to-house survey, covering 360 million people in 20 states. The survey unearthed 34,672 cases of previously undiagnosed symptomatic leprosy.
“People started acting,” Kumar said. He swivelled his computer screen towards me and pointed to a graph of new G2D cases. Before Kumar issued his directive, the number had been steadily growing. However, in 2015–16, the graph turned a corner. There were 649 fewer new G2D cases that year than had been anticipated, based on a linear regression. “These are the people that would have become G2D cases in one year’s time,” he said. “It’s a small change only.”
The big change he was looking for would take more time to materialise. But for the first time in years, it looked like things were moving in the right direction.
IN MARCH THIS YEAR, I flew out to join Dr Manimozhi Natarajan, a veteran leprologist, on a field visit to northeastern India. The northeast has not historically ranked among India’s leprosy hotspots—Chhattisgarh and the union territories of Lakshadweep and Dadra and Nagar Haveli top the prevalence tables—but I had heard that the region was lagging when it came to leprosy care, that patients here were at risk of slipping out of view.
A few hours after I landed in Guwahati, Manimozhi and I were rattling through potholed roads towards the fringes of the Assamese capital. We parked up at a building that appeared to be either half-constructed or half-demolished—it was hard to say which. It turned out to be the headquarters of the state leprosy officer and her team. Fifteen minutes later, Manimozhi was sitting across the desk from the SLO, Dr Pranati Das, thundering good-naturedly, “When people talk to me about ‘hidden cases,’ I blast them!”
Manimozhi, who works for the non-profit AIFO India—and is also a consultant with the NLEP—had just returned from conducting a training session for health staff in rural Assam, and was ruminating on the state of leprosy control in the districts. The G2D rate among the 126,164 new cases registered nationwide in 2017–18 had nudged down to 3.61 percent, but in Assam, 12.46 percent of new patients that year had visible deformities. “I’m not happy with Assam,” Kumar told me, when I put that figure to him.
Under such conditions, talk of “hidden cases” sounded like excuses to Manimozhi, who is one of only a couple of leprologists working regularly in Assam. As far as he was concerned, hidden cases were to be found, not talked about. “Leprosy is there, has been there,” he told Das, urging her to take to task any districts reporting zero cases. In fact, he said, if she would provide him a list of people snoozing on the job, he would be happy to “take a stick to them.”
I had met Manimozhi a few months before, in the suburban house in Bengaluru that serves as AIFO India’s headquarters. “I’m full of M. leprae!” he told me. “Full! Packed!” This was conjecture—like an estimated ninety-five percent of people exposed to the bacterium, he has never shown symptoms. He was making a point—about the ubiquity of the bug and the senselessness of the stigma surrounding leprosy—but, to me, it sounded like an attestation to a long and intimate acquaintance with the disease. His dedication to his work is total and feverish, and sometimes he talked as if he might defeat leprosy with determination alone. Most nights, when he is neither in the field or visiting his wife out of state, he sleeps in a cot in his office.
A grey-haired lion of a man, with fierce eyes under still-black eyebrows, Manimozhi is 64 years old. He cut his teeth in leprosy control in the 1980s, when MDT was brand new and he was part of a frontline team conducting trials of the protocol in southern India. “Back then, we were really hitting hard,” he told me, recalling 4 am starts in the jeep, rumbling across the Tamil Nadu countryside to reach patients. “If we had continued with the same seriousness, maybe we could have finished it.”
The declaration of elimination, he said, “cost us dearly.” He turned to MV Jose, a sociologist and the director of AIFO India. “Jose! How many days did you get trained in leprosy in those days, in ’85?”
“Minimum six months,” Jose said, smiling mildly.
“And me, as a medical officer, to be some half-boiled specialist, it took six weeks. Today, people argue you can do it in six hours! In six minutes!”
Many of the experts I spoke to feared that India’s once-rich stream of leprosy know-how was drying up more quickly than the disease. In 2005, VV Pai and Dr R Ganapati of the Bombay Leprosy Project wrote in a letter to the editor of an Indian leprosy journal that with the proclamation of elimination, the world would also become “free from so-called leprologists.”
When we met in Mumbai, Pai explained that a specialisation in leprosy was a hard sell. One hitch was the belief that an “eliminated” disease offered young doctors no future. Another was the question of prestige. “Leprosy is not a glamorous disease, unlike your HIV, your TB,” he said. Dr Ashish Wagh, a Patna-based leprologist and NLEP consultant, told me that he and his colleagues had “tried everything” to get government surgeons to learn how to perform the reconstructive operations that leprosy patients need, to no avail.
Wagh warned that an entire generation of frontline field staff, who had been trained under India’s specialised leprosy-control system before integration, was approaching retirement, without adequate replacement. “Human resources of leprosy is a very big concern for the future,” Cooreman told me. “How can we keep the next generation of health workers competent for leprosy in the context of a dwindling disease? It’s a big issue.” (In an attempt to stem the haemorrhage of knowledge, the WHO and the NLEP are developing e-learning modules.)
“We need everybody to talk and think leprosy,” Manimozhi said. “This time, we can kick it off. It’s about putting in all efforts to”—he clenched both fists for emphasis—“finish it.”
Putting in that effort, however, has become more difficult. NGOs such as AIFO India, which is part of the international anti-leprosy federation ILEP, have been filling the gaps in the country’s leprosy-control system for generations. But their reach has shrunk along with their coffers. Jose told me that AIFO India used to spend, on average, between five crore and seven crore rupees a year. After the declaration of elimination, its annual budget withered to Rs 1.5 crore.
According to Jose, financial constraints are the reason why no other leprosy NGOs operate in the northeast, where the absolute number of patients is lower than, for example, in Bihar or Uttar Pradesh, and the costs of access are higher. He estimated that a reconstructive surgery costs about fifty percent more in Assam or Tripura than in south India. “But you can’t calculate the cost,” he said. “You can only calculate the value to the patient. Persons are there involved.”
THE DAY AFTER Manimozhi and I visited Pranati Das’s office, we boarded a flight to Agartala, the capital of Tripura. Wagh flew in from Bihar that same evening, carrying a bundle of gleaming silver instruments.
The anonymising calculus of leprosy-control programmes sometimes obscures the fact that, in Jose’s words, “persons are there involved.” Individuals whose bacillary load has been killed by MDT are classified as “released from treatment”—which often means their identities are expunged from the record—even if the physical effects of their leprosy are permanent or progressive. The total number of people disabled by leprosy in India is unknown. Their needs are not systematically addressed. Reconstructive surgery can be a final shot at some form of restitution for the people who fell through the cracks.
At 11 am the following day, Wagh’s first patient, a 51-year-old vegetable seller named Uttam Debnath, cheerfully walked into the operating theatre at GB Pant Hospital. He had been undergoing physiotherapy at the hospital for the past two weeks, and Wagh had judged his affected hand sufficiently supple for surgery.
Two other patients had not been as lucky. Ranthai Tripura, a former agricultural labourer—who, years ago, had mistaken his early symptoms for fertiliser burns—needed at least one more week of physiotherapy to qualify for the procedure. Another young man, who asked not to be named, had recently completed his MDT course but showed signs of neuritis—an inflammation of nerves causing muscle weakness—on one side of his face. It is a cruel trick of leprosy that it can cause nerve damage even after active infection has been killed. Pieces of the dead bacilli remain and, in some cases, agitate the immune system. Without treatment, neuritis can lead to permanent numbness. The young man was prescribed a three-month course of steroids to reverse the damage.
“There is no system in place to track the patient,” Wagh later told me. “The patient thinks, ‘I took MDT, finished.’” If their “cured” leprosy acts up, it is often up to them to recognise the problem. “Counselling is very important,” Wagh said.
The two patients would have to wait months, perhaps years, for another chance at the procedure, and all the while the clock would keep ticking: if their contracture stiffened too much, surgery would be useless. There are no surgeons in the region willing, and trained, to perform reconstructive surgeries on leprosy patients. Wagh had last operated in Agartala in 2015. Available data for the period that followed recorded no further surgeries in the state. “Somebody coming from outside is not a long-term solution,” Wagh told me.
In a small room around the corner from the operating theatre, a group of cured but permanently disabled patients had gathered. Manimozhi moved among them, inspecting their faces and limbs. One man, a daily-wage labourer called Sukumar, had been diagnosed in 2001. Leprosy had affected a facial nerve, causing his lower left eyelid to hang open and accumulate dust and debris from the construction sites on which he worked.
Rasiklal Southal, another patient, had a dragging, numbed foot. Manimozhi crouched to examine it. The government issues protective sandals to those disabled by leprosy, but his sandals seemed so fresh that it appeared he rarely wore them. Scabs marked his recent injuries. “I’m very upset; he’s asking for trouble,” Manimozhi said to Dr Manas Bhattacharjee, the Tripura SLO, who was accompanying him on his rounds. Manimozhi showed Southal how to soak the foot daily and massage it with Vaseline. “Realisation is more important than information,” he told me. “We explain complicated nonsense to people, and it doesn’t help.”
We flew back to Guwahati the next day, then drove eight hours to Borgang. Fuel prices had risen, and Manimozhi worried that transportation costs were eating into his fieldwork budget. By the time we reached the Catholic Hospital, it was dark. Wagh handed over his surgical kit to a nun for sterilisation in the autoclave machine. Over the next few days, he was scheduled to perform nine reconstructive surgeries and five ulcer-debridement procedures.
One of his patients was Sunita Gorh. The following afternoon, Wagh, dressed in green scrubs, sat bowed over her illuminated right hand. As his gloved fingers made their precise and practised motions over Gorh’s opened palm, P Vijayalaxmi, a physiotherapist with AIFO India, patted Gorh’s left shoulder and spoke to her in soothing tones.
Gorh was awake, under local anaesthetic, and moaned in discomfort. Her upper lip was beaded with sweat. The tourniquet on her right arm was painfully tight. It had to be, to prevent blood from welling up in the incision and obscuring the mechanism of her hand, but her growing restlessness put Wagh under time pressure. Still, once he had reconfigured the arrangement of her tendons, Wagh paused, squinting like a sculptor, and pulled on each one to adjust the tension of the fingers. For the hand to hang as aesthetically as possible, he explained, each finger from index to pinky needed to curl a little more than its neighbour. Finally, he sewed the skin shut, and Vijayalaxmi encased the hand in wet plaster.
Later that evening, I followed Vijayalaxmi on her rounds to the ward where the leprosy patients—all “cured,” some recovering from operations, some awaiting them—were housed. The patients had come from all over Assam for the opportunity to see a surgeon who would help them. The mood was festive, like at a big family reunion.
Out of hospital garb and back in street clothes, Gorh was crackling with optimism. She parried sisterly taunts from Vijayalaxmi, whom she had first met, a couple of years before, at a leprosy camp in Jorhat, soon after her diagnosis. Now, holding up her cast like a wrapped Christmas gift, Gorh told me that she was thinking of one day opening up a photocopy shop. In time, she figured, she might expand into selling rations. Marriage was not off the table, but it was not a priority either—though Vijayalaxmi teased her that she would be fighting off proposals once her business took off.
In a side room, Vijayalaxmi asked Gorh to show me the physiotherapy exercises she would need to perform each day after her release from hospital in a few weeks. Gorh grinned and rolled her eyes, but began to demonstrate how she kneaded her hands with oil and flattened out her fingers on a flat surface, gently, beneath her triceps, where she still had enough feeling to gauge pressure.
The difficult fact was that though Gorh’s hand was expected to recover a range of motion after surgery, it would also become more fragile. With the tautened, split tendons in her fingers each bearing a greater load, they were more prone to snapping under pressure. Gorh would forever have to remember to carry buckets with the handle placed across her palm, instead of nestled in the bend of her fingers. The numbness of her extremities meant she would have to forever remain vigilant for unfelt injury. The effects of her leprosy, in other words, would remain with her forever.
THE BUG itself is not going away just yet, either. Given its incubation period, to talk about “eradication”—the truly final term in the leprosy lexicon—on anything less than a twenty-year horizon is vanity. But Kumar was optimistic. In mid 2019, fresh annual data showed India had achieved its lowest-ever rate of G2Ds among new cases, and absolute numbers of new cases were down fifteen thousand from 2016. If the country continued its recent efforts, Kumar had told me in May, “by 2030, India will be leprosy free.” Leprosy free—another slippery term—means zero transmissions, zero new infections. “I am not saying eradication,” Kumar clarified. “I am saying leprosy free. Eradication will take more time.”
In October, Kumar announced his imminent transfer out of the NLEP’s Central Leprosy Division. “It’s a loss for the program,” Manimozhi texted me. I called him back to ask if he was worried that the gains of the last few years were in peril. “A good leader has left us, but that’s not going to stop us,” he said. The NLEP might be the head of the anti-leprosy campaign, he said, but the battle against leprosy was, in the end, about heart. “We need to fight!” he said.
There had been moments when Manimozhi’s pugnacious energies seemed to dim a little. On my last morning in Assam, I found him in a contemplative mood over breakfast. “It’s very sad, no?” he said. “Everything is odds against us.” He had sat up late the previous night, reminiscing with Wagh about patients he had loved and admired, and now he was feeling his age, his long years on the job.
He wondered whether eradication might not be a misplaced horizon. “Even if new cases ended, people would still have their disabilities,” he said. What worried him most was leprosy the psycho-social affliction, he said, not leprosy the bacterial infection. If leprosy could be understood like dengue—with matter-of-fact public consciousness, with speedy treatment—could that not be considered tantamount to eradication? He tried his hand at sloganeering. “Make leprosy a tamed disease!” he said, gesturing the message into the air like a banner. “Let it be there! Let it no longer damage the lives of people. We can handle it.”
A couple of centuries from now, Cooreman told me, M. leprae might become “commensal”—a harmonious bacterium, perfectly disarmed by our immune systems—rendering leprosy a genuinely tamed disease. In the meantime, the global leprosy community is trying to change how the world thinks of the disease. “In the past, the leprosy burden was narrowly defined as the number of people that require treatment,” Cooreman said. “But there are also patients who require care after cure, and that number is significant—probably manifold higher than the number of cases requiring treatment.”
Among them are people who, like Sunita Gorh, require the attention of a surgeon. But there is no roster of the cured but impaired, and the number of people currently in need of reconstructive operations is unknown. “You’d have to visit every house and ask if there is a person disabled by leprosy,” Kumar told me. “You cannot even estimate.” Whether or when this will happen, he implied, is up to the state healthcare teams. “States need to get their manpower energised, and then get the survey done.”
“Each one do your duty,” Manimozhi intoned over the phone, months after our trip to Assam. It was not only about doctors or healthcare officials stepping up to the plate—and the questions facing the future of leprosy control were not only medical. “The question is, did we make a real change in their lives?” he said. “Let’s be human beings, you know?” He imagined policy makers and doctors, yes, but also sociologists, the media and “the idiots on WhatsApp,” talking about leprosy just as he sees it: a problem we can fix, as a community.