10-year-old Lakshmi* was waiting for her turn at the Leprosy Training Centre, Hyderabad, and her mother was desperate for a solution. The hands of the student — who will soon move to Class 5 — have now begun to take the shape of a claw. Her fingers bleed every time she has to write a little more than usual in class and she is sent home. Lakshmi has Hansen’s disease, widely known as leprosy, due to which she has lost the fingertips of her ring and pinky finger.
Lakshmi’s mother, Rama*, a daily wage labourer, ran from pillar to post seeking treatment for her daughter. The leprosy had not been detected or treated in time, which lead to Lakshmi’s disability. And after visiting almost a dozen clinics, they had all told Rama the same thing — her daughter would require surgery for her clawed hand.
The existence of leprosy has been known for over a century, with the bacterial pathogen reportedly identified as early as 1873. However, the disease doesn’t have a vaccine and it takes a long time for it to show visible signs, which can lead to disabilities if not corrected in time. Though there is a cure for the disease, a lack of awareness has turned leprosy patients into social pariahs, bringing hardship to their professional and personal lives.
In 2005, the disease had been declared ‘eliminated’ — a label that can be used when a country has less than one case out of 10,000 people — which meant that the disease wouldn’t be treated as a public health problem.
But it wasn’t until 2015 that experts realised India’s battle against leprosy was far from over.
India is home to more than half the world’s leprosy cases, according to a 2018 study.
In 2015, a decade after the government made that declaration, counting of cases was finally taken up again, but only in seven states. Many professionals who work in the field of leprosy and who did not want to be named, said that in the decade after 2005, in order to keep the numbers below the target, patients had been turned away. As a consequence, many cases weren’t registered between 2005 and 2015.
“They didn't want to go beyond that because that would show that elimination did not take place in a particular state. So, they would send them away. They wouldn’t register a certain number of patients,” a source said.
With India declaring that there were less than one in 10,000 cases, it took away attention from places that needed it most. Some states were endemic, while others had few cases. States with fewer cases averaged out the numbers of endemic states, such as Andhra Pradesh, Telangana and Maharashtra, taking away critical attention.
In the period between 2005 and 2015, the government “took its foot off the gas pedal,” said Ashim Chowla, the chief executive of Lepra, the NGO that runs a clinic at the Leprosy Training Centre, where Lakshmi was diagnosed. The disease had been integrated into the general health system (instead of being separate like tuberculosis or HIV). Ashim said the number of cases kept piling up, but the prevalence rate of less than one in 10,000 cases continued.
Nikita Sarah, the head of advocacy and communication at the Leprosy Mission in New Delhi, echoed Ashim’s sentiment and says that the disease fell off the radar.
“Elimination didn't happen across,” she said. “It fell off the radar and there was no active case surveillance after that.”
Lack of awareness
Leprosy is a droplet infection likely transmitted via the nose and mouth — be it a cough, sneeze or even exhalation. While it has no vaccine, most people aren’t affected by leprosy if their immune system is strong. Leprosy has a long incubation period, and slowly infects the skin and other areas. In some cases, it can take anywhere between three and 20 years for the disease to manifest.
When left untreated, leprosy can lead to disability. According to the World Health Organisation (WHO), there are three grades of disabilities — grade 0, which means no disabilities; grade 1 is anaesthesia (no sensation) but no visible deformities; and grade 2, which is visible deformities and damage.
Lakshmi, who has grade 2 disability, had complained of having no sensation even after hurting herself. With two of her fingertips now lost and a palm where she has no sensation, Lakshmi doesn’t realise when she hurts herself. “I write as is with my right hand. It bleeds sometimes, so I'll just wipe it off. I get sent home from school. Whenever I write more, it starts to bleed,” the young girl said.
Lakshmi and her mother Rama
At the very same centre where Lakshmi and her mother have come to seek advice, many patients wait for check-ups, wound clean-ups and more. A common thread among the patients is the fear of ostracisation and social isolation, because of which many of them have hidden their diagnosis. According to Nikita, the image of a person affected by leprosy is one who is deformed, and the word ‘leper’ perpetuates that misconception.
“Fateful images of leprosy is what is in people's heads. They don't see that if treated early, the disease can be cured,” Ashim said.
Delay in treatment and incorrect diagnoses have also led to the loss of livelihood for many.
Pharmacy worker Harish*, who developed no patches but nodules over his body had to drop out of the workforce till he received treatment.
“There were small bumps throughout my body. I thought it was a rash at first, but I was in pain and developed a fever as well. It was bad for six months, but it was fine after treatment. However, for the two years that I had the nodules till the time I got treated, I couldn't work,” said Harish.
Harish’s wife, however, has no idea that he has leprosy. “I was scared that there would be problems, which is why I didn't tell my wife,” he said. And he isn’t the only one who is afraid to admit to loved ones about having leprosy.
Raju*, an office boy and father of two, also hasn’t told his wife about his disease and admits to changing his job every six months. “I have to keep taking leave because I keep having to come here to clean and get the wounds dressed. I can’t do this at home because my wife may suspect that something is wrong with me. I also can’t tell my workplace that I have leprosy because I will not get the job,” he said.
One of the most prevalent my3ths surrounding leprosy is that it is a “curse of god”. Many are also afraid to admit to their spouses because of a myth that it is sexually transmitted.
Ashim, Lepra’s chief executive, says that cases of women affected by leprosy are under-reported. Detecting leprosy comes under the purview of Accredited Social Health Activist (ASHA) workers, but women often don’t acknowledge a patch or aren’t willing to show their bodies to someone to get tested. “Women aren't seeing their bodies, which is why we think midwives are very important,” he said.
Dr Aruna Bala Chaudhary, a medical consultant at the centre, said that people with leprosy don’t just need free medication, but active counselling, physiotherapy, custom-made footwear and more.
“When we go for awareness sensitisation programmes, we tell them about the patches. We tell them about the lessened colour of the skin, and that must have a definite loss of sensation. Many-a-time, if it’s on the face, it’s visible and they are conscious,” she said.
Despite the stigma surrounding the disease, leprosy does have a cure and if treated at the right time, can be cured like any other disease. Leprosy’s cure is MDT, or multidrug therapy. The very first tablet kills a majority of the bacteria in the person’s body, and the remaining over the course of the medication. Detected early enough, MDT can cure a person of leprosy. It’s freely supplied by drug manufacturer Novartis, and is available and supplied at Public Health Centres.
Back on the radar
In 2015, a leprosy case detection campaign was taken up by the National Leprosy Eradication Programme (NLEP) under the National Rural Health Mission. According to NLEP, 1.27 lakh new cases were reported in 2015-16. The numbers shot up to 1.35 lakh the following year, while 1.26 lakh leprosy cases were reported in 2017-18.
This, however, is still an understated number. Leprosy is not a disease that has to be mandatorily reported — and those who get treated by private practitioners are not included in the total number of cases.
Dr Anil Kumar, the Deputy Director-General of NLEP, acknowledges that leprosy was on the backburner for the decade after elimination was declared. “It was not of priority because elimination was declared,” he said.
“In the very first campaign, we covered a large chunk of the population by visiting each and every house in 20 states. We then further expanded it. We are now covering 600 million people,” Anil said.
“Leprosy has a long incubation period — an average of six years. If you try to detect more cases, then the prevalence can go up. That doesn’t mean the real number of cases is increasing. In the last four years, we have improved surveillance, and grade 2 disability is going down. We have prevented over 10,000 grade 2 disability cases in the last 3.5 years,” he added.
According to Ashim, India’s public health system has displayed that it is possible to tackle public health crises. “If there was no stigma and detection was taking place at the rate detection should take place, then the disease would have been at a level where supply factors would have been adequate to deal with that problem,” he said.
Ashim had leprosy as a child himself and was then treated. “It should be simple to get diagnosed and get treated. Many people don't believe that they can have leprosy. It's unfair. People should not struggle,” he added.
“We've done great injustice to people with leprosy and today, each case, is a case of gross inhumanness, injustice and neglect. It is sickening to see people developing leprosy,” said Ashim.
Nikita said many from affluent backgrounds often believe that they can’t be affected, but the disease doesn’t discriminate, affecting people across classes.
In 2017, a Public Interest Litigation filed by the Vidhi Centre for Legal Policy listed 119 laws in India that discriminated against persons with leprosy — in areas such as transportation, marriage, beggary, nomination for professional positions and more.
In a September 2018 judgement, a three-judge of the Supreme Court headed by former Chief Justice Dipak Misra outlined 15 directions — including national surveys, awareness campaigns, availability of MDT drugs, assessment of the disability quotient of leprosy-affected persons for the purpose of issuing disability certificate, and free treatment through NGOs or government among others.
Soon after these directions, the Lok Sabha passed a bill which officially excluded leprosy as grounds for divorce in India. Five marriage-related laws were to be amended as a result of the passing of the bill — the Divorce Act (1869), the Dissolution of Muslim Marriages Act (1939), the Special Marriage Act (1954), the Hindu Marriage Act (1955), and the Hindu Adoptions and Maintenance Act (1956).
While the Supreme Court’s judgment in Pankaj Sinha v. Union of India and Others certainly put forward directions that are necessary, a long road remains ahead as people are still conditioned to ostracising persons with leprosy.
Nikita said that the government needs to assess the disability of persons with leprosy properly, and not wait till they have visible deformities. “One of the major disabilities is that you have an anaesthetic hand or foot, where you have no sensation as your nerves have been destroyed by the bacteria. That's an invisible deformity,” she said, adding that these people are left out of the ambit of aid and schemes to assist them.
She adds that to change the perception surrounding the disease and to convince more people to come forward for treatment, they require people who have been affected to come out and tell their stories.
Turning the tide
One of those people is 46-year-old social worker Krishnamachari, who has a disability due to leprosy after he was diagnosed at the age of 15. According to Krishnamachari, he faced discrimination, but now actively works in his village to make sure people get treated and receive the care they need.
“I'm healthy and fit, and I am a member of society, but the public still considers me a leprosy patient, as a burden,” he added.
While social workers are actively working to ensure that persons with leprosy continue to lead their lives normally and dispel the myths surrounding the disease, there remains a long fight ahead.
The government now has a new target — eliminating grade 2 disability (visible deformities and damage) by October 2, 2019. And for this, it is encouraging states to detect more cases.
“Grade 2 disability is an indicator of more number of hidden cases and it is also an indicator that the transmission at the community level is going down. If we have to detect more cases, that is OK. We are encouraging our states to detect more and more cases,” Dr Anil said.
“Early case detection is the only tool you have at the moment to interrupt transmission. If you are able to interrupt transmission by detecting cases as quickly as possible, by getting them treatment, and treat reactions if any, they will no longer be infectious cases, and will not spread the disease and that is the end of the story,” Ashim said.
Timely detection and treatment could have saved Lakshmi’s hand and allowed her to experience a typical school day without pain or suffering. But for the government playing catch-up, slamming the accelerator to detect more and more cases may be the only option they have.