While leprosy patients recall the hurt that stigma brings with it, a look at the status of the disease in the country
Hulagappa doesn’t remember when he contracted leprosy. Sometime in childhood, he estimates. He developed the tell tale pale skin patches without sensation and he knew that something was amiss but he didn’t know exactly what. His parents were worried that a witch had attacked their son. But others in their village began telling the family that he must have leprosy. At the time he didn’t know anyone with leprosy but he soon found out that it carried a serious stigma for him and for his family. “I was in a small, uneducated village; so I faced a lot of discrimination. They didn’t want to eat with us, didn’t want to sit with us.”
Did this mistreatment make him angry? “Not angry, sad,” he says. “What is the use in getting angry? God has given me this disease so what can I do?” But when the stigma spread to school, his father took him to a Catholic priest who sent him to a government hospital where he was officially diagnosed with leprosy and started the treatment that would ultimately cure his leprosy.
In the year between developing patches and visiting the doctor, however, the bacteria that causes leprosy had affected the nerves to his hands and feet. He lost sensation in his limbs. Pain is a protective mechanism against injury so without sensation, he couldn’t help but burn and injure his hands and feet leading to permanent disability and disfigurement — known to health experts as grade 2 (visible) deformities.
He was also facing another issue: he had fallen in love with a girl he had known since childhood. But her family, especially her uncle, firmly disapproved. It took the threat of court intervention before they were allowed to wed. “You think, ‘he’s ugly, he has a disease,’” his wife asked her family, “but what if he got leprosy after we were married? What then? They had nothing to say to that.”
Stigma not unusual
This stigma that leprosy patients face is not unusual, it happens to most patients: “The stigma is not confined to persons affected by leprosy only but spread to the family and the impact is intense,” confirmed V. Narsappa, an activist and chairman of the National Forum of India by and for leprosy-affected persons who was himself diagnosed with leprosy at the age of nine years.
Most countries in the world view leprosy as a disease of the past. But across the world, someone is diagnosed with leprosy every two minutes and seven out of every 100 cases is a child, according to the WHO. In 2012, there were 232,850 new cases of leprosy reported, with 94 per cent of these cases restricted to 15 endemic countries (almost exclusively in South-East Asia and Africa). How many of those cases were in India? A whopping 134,752— by far the highest number of cases in the world (Brazil ranked second with 33, 303 cases). And the number of cases is on the rise: in India, there were 7,457 additional new cases in 2012 compared to 2011, according to new statistics from WHO’s Global Leprosy Programme.
Leprosy is caused by mycobacteria named M. leprae. The disease affects the skin, nerves (especially the peripheral nerves — nerves that go to places like hands and feet) as well as the lining of the upper respiratory tract and the eyes. And contrary to popular lore, leprosy is NOT highly contagious. It is spread primarily through respiratory droplets (from the nose and mouth) via prolonged and frequent contact. Also, scientists believe that a compromised immune system (from chronic malnutrition or from another medical condition) is partially responsible for acquiring the more severe form of leprosy, called multibacillary leprosy.
Lack of awareness
Most people don’t know that it’s completely curable with multi-drug therapy (MDT) — a combination of two to three antibiotics that came into use during the 1980s. This treatment is free to all patients across the world through the WHO. However, without treatment or if treatment is delayed, many patients suffer irreversible damage to their skin, nerves and eyes, leading to disfigurement, muscle wasting, paralysis and blindness.
Living in isolation
For centuries, people affected by leprosy were segregated in separate colonies for the fear of spreading the disease. But even though modern science has taught us that leprosy is curable, former leprosy patients often choose to remain in these colonies for economic, political or socio-cultural reasons. Seventy-five families live in Mr. Hulagappa’s colony; all have someone in the family who had been diagnosed with leprosy but all were fully cured.
The accommodations are certainly humble and rodents ran over the floor during the course of the interview. But light penetrated the dwelling, which was adorned with pictures of the couple’s five children. Neighbours wandered in and out. “There is a sense of togetherness here,” explained Mr. Hulagappa. “Here we are able to have some facilities. If I’m left to my own in the wide world, I will just be forced to beg. And of course there is social stigma [outside the colony].” Indeed, with the government providing water, basic shelter and electricity, Mr. Hulagappa was able to find a job as a cleaner in a government office. But even finding work was a struggle that required meeting with Chief Minister Sheila Dikshit. And as for claims that government-sponsored housing encouraged unemployment and dependency, he responded, “I don’t think that’s true. What is wrong with getting us food and clean clothes and a colony? We will still work. We need to raise our families, children need to be educated.”
Struggle for rights
Despite the sense of community and activism by groups such as the National Forum of India, leprosy-affected persons still struggle to obtain even the most basic services. Mr. Narsappa brought forth a Public Interest Litigation in High Court to get the government to provide basic services to leprosy-affected persons. He demanded specialised handicapped footwear, visits by medical workers and dressing materials. While the court ruled in his favour, many leprosy-affected persons have yet to see any tangible results. “Now the [medical] workers come but they don’t have any dressing materials,” he said with a rueful shake of the head. Mr. Hulagappa agreed, stating that many of his elderly friends and neighbours are not receiving the pensions to which they are entitled. He spoke of frequent visits by politicians around election time but called their promises “bogus” and empty. What would he most like assistance with? Jobs for his friends and neighbours. “These are educated people who have been shunned by their families and now they don’t have work,” lamented Mr. Hulagappa. “Even some small work, they are willing to do it.”
Some interventions have been successful. Mr. Hulagappa spoke of a job training center that taught tailoring and incense making; all women in his community attended it. “It was a happy time, they were able to work and make some money. But then they closed it and we were all sad.” This story was all too familiar. “Elections are coming,” he explained, “people will come to promise this, promise that…people talk a lot but we don’t get the help that we need.”
(The writer is the 2013-2014 Stanford-NBC News Fellow in Media and Global Health)