Life after leprosy, India’s untamed disease

“My entire family started to cry when they read the letter," says a bespectacled Ashok, who is now 52, sitting in a staircase in the cramped gullies of Kasturba Gram in Delhi, one of India’s 750 leprosy colonies. “My father told me I had kushth rog (leprosy), the disease that the beggars who would come asking for money to our home, with disfigured limbs, had. I was shocked."

Soon, Ashok was kept in isolation in a room at home. His friends began to avoid him and the holy river that once served as a spot for playful diversions became the sight where he would attempt to end his life, before being rescued and taken home by boatmen. He was eventually sent to Titagarh in West Bengal for treatment, where he was cured, and brought to Delhi by a man who promised to find him gainful employment. “He took me to the border on a tricycle, handed me a box, and asked me to go from shop to shop and ask for money," recalls Ashok. “I refused to beg. I may have had disabilities in my body, but my soul and strength were absolutely fine," he adds, looking at the deformities on his hands, a result of delayed treatment.

Today, Alshok is a plumber and electrician who services several schools, offices and homes in Dilshad Garden, and the vice-president of the Residents Welfare Association of Kasturba Gram, where he lives with his wife and 25-year-old son who is studying to be a radiologist.

But for those like Ashok, years of struggle to reclaim a life interrupted by a dreaded disease is only the beginning of the road to normalcy. Social acceptance is a whole different ball game.

Take the case of Najma from Bareilly, Uttar Pradesh. At the age of 10, she discovered a small perforation under her big toe on her left foot. It got worse, and soon she was unable to walk because her foot turned inwards.

“When people found out I had leprosy, they would tell my brother and sister-in-law to keep my plate and glass away, and to keep me away from them as well," she says, seated outside her home in Jai Hind, a leprosy colony close to Ashok’s. She travelled to Agra, Chennai, and Delhi for treatment, but a delayed diagnosis has rendered her lame. Her feet are significantly smaller in size, and a few of her toes have been surgically removed. She, now 40, lives with her husband—whom she met at a hospital, and who is also a leprosy-cured person—and her two healthy children— Asha, 20, and Ashraf, 18. She leads a women’s self-help group in the colony and works as a cleaning staff in an office nearby.

Further away, in Coimbatore, is Jayashree P. Kunju. “That time we were getting into fashion. My sister and I were shaping our eyebrows, cutting our hair, bleaching our skin," she remembers excitedly. “My mom used to scold us. She thought my hair was beautiful and I shouldn’t cut it, and eyebrows should be thick for girls and not be pencil-thin," she adds. So, when Kunju discovered a pale pink patch on her right arm, she hid it from her mother assuming it was a reaction to the bleach. But as the muscles in the limb weakened, she was promptly referred to a doctor. Kunju’s mental and physical health worsened when she found out she had leprosy. However, support from her family and dedicated treatment helped her keep her spirits up, and cure her of the disease. She moved to Bengaluru and completed her education. Today, she is 56, and the chief executive of IBAS Global, which runs coaching for global professional courses. She lives with her husband, who is also her business partner.

Ashok, Najma and Kunju are among the many leprosy-cured people in India from different backgrounds, and with varying levels of disability as a result of the disease. They represent the realities of having combated the disease, picking up their lives, and fighting the odds that society, scriptures, and statutes have long held against them.

Elimination isn’t eradication

India accounts for 60% of all new cases reported annually, with over 1.3 lakh new cases in the year 2016-17, according to the National Leprosy Eradication Programme (NLEP). This means that one person is diagnosed with leprosy roughly every four minutes in India, which figures among 22 nations considered to have a ‘high burden’ for leprosy according to according to the World Health Organization (WHO).

These statistics may come as a surprise, given the fanfare with which India declared it had eliminated the disease as a public health problem in the year 2005. But that does not mean the disease was eradicated. For reference, India was certified polio-free by the WHO five years ago, with no new cases of wild polio reported since January 2011. This is a distant dream as far as leprosy is concerned.

“The WHO benchmark for elimination is that there should be less than 1 case for every 10,000 people. It does not amount to eradication," says Dr Anil Kumar, deputy director general, NLEP. “That was the average at the national level. There were certain states where the cases were still very high," he adds.

The status of elimination also meant that leprosy was integrated with the general healthcare system as opposed to the erstwhile scheme where it had its own vertical. With attention and funds shifting to other diseases such as polio and HIV, leprosy remained largely ignored in the country. Kumar says that last year ₹42 crore was allocated for the NLEP, even though the number of new cases is nearing 1.35 lakh and “approximately 7-8 lakh are harbouring the infection, but have as yet not been detected".

“The number of new HIV cases is approximately 88,000 and the hidden cases would be close to 20-25,000. The funds allocated to HIV is more than ₹2,000 crore," Kumar says.

The number of prevalent leprosy cases, though staggering, would have continued to grow undiscovered if not for a nationwide Leprosy Case Detection Campaign (LCDC) launched by the NLEP from 2015 onwards, across high and low endemic regions. “For 10 years until 2005-2006, we had active case detection. After that, it (the number of cases) was almost static. But if you look at the disability cases, the number was increasing," says Kumar. “This is an indicator of hidden cases."

The LCDC, which had Accredited Social Health Activist (Asha) workers conducting door-to-door examinations across high endemic areas, marked a return to the active-detection strategy, instead of relying on voluntary reporting of the disease by those affected. Self-reporting was often not done, either due to the societal stigma or due to a lack of awareness of its symptoms.

“Due to active case detection campaigns in recent years in high-burden districts, we have seen an increase in leprosy cases," says Erwin Cooreman, team leader, Global Leprosy Programme at WHO. “The campaigns are leading to early case detection resulting in a reduction in disabilities," he adds.

From scriptures to science

Historically, leprosy finds mention, though not by name, in texts dating back to the Atharva Veda in 2000 BC and the Manusmriti in 1500 BC, prohibiting contact with those affected and prescribing punishment for those who married into their families. “The Sushruta Samhita (600 BC) recommended treating leprosy—or kushtha, meaning “eating away" in Sanskrit—with oil derived from the chaulmoogra tree," write Jesse T. Jacob and Carlo Franco-Peredes in their paper titled The Stigmatization of Leprosy in India and Its Impact on Future Approaches to Elimination and Control. “In a legend explaining chaulmoogra oil’s therapeutic origins, a king banished for his leprosy was instructed to eat the curative seeds of this tree, illustrating the cultural response to leprosy in antiquity: loss of social position and expulsion, even of kings, from the community."

Today, it is known that leprosy is a chronic infectious disease caused by Mycobacterium leprae, found largely in warm tropical regions. It has a high incubation period and, if not diagnosed and treated early, can result in nerve damage, disability, blindness and more commonly in sores and ulcers. These too can be corrected through reconstructive surgery.

“If it is paucibacillary (low number of bacteria) leprosy, 99.9% of the bacteria is killed in one single dose of Rifampicine. But in cases of multibacillary leprosy, the live bacteria count comes to zero in about 5 weeks after we start MDT," says Dr. AK Saxena, head of the department, dermatology, Safdarjung Hospital.

Though the stigma associated with and seclusion of those affected by the disease persists, significant developments have been made in its treatment. It’s easy enough to detect—a discoloured or glistening red patch anywhere on the body, where one experiences numbness is usually a clear indicator of leprosy, and a prompt visit to the dermatologist can prevent further infection. Contrary to popular belief, the disease is not severely contagious—it is transmitted through the air if there is prolonged contact or via nasal droplets of an infected person.

As Najma rightly points out, “Yeh chhoot-chhaat ki bimaari nahi hai. (This isn’t a disease you can get just through touch.)" And since 1984, leprosy has been completely curable at any stage with multi drug therapy (MDT)—a combination of Rifampicin, Dapsone and Clofazimine—for a period of six months or one year depending on the severity of the disease.

Leprosy and the law

In spite of these medical advances, India has long had leprosy as a ground for discrimination on its statute books – whether it relates to permitting the segregation and detention of persons affected by leprosy under the now repealed Lepers Act, 1898; personal laws relating to marriage and adoption; or holding positions in public office.

Bijendra, 29, says he was abandoned by his wife when he was diagnosed with leprosy nearly 10 years ago. “Her father told her if she wanted to continue staying with me, they would disown her… that the disease lasts for seven generations in the family," he says. “They took my son away, filed a dowry case against me, and I even had to go to jail when I couldn’t afford to pay the maintenance," he adds.

A few discriminatory provisions have been repealed or amended. Earlier this year, the Lok Sabha passed the Personal Laws Amendment Bill, 2018, removing leprosy as a ground for divorce. And a public interest litigation filed by the Vidhi Centre for Legal Policy has challenged 119 statutory provisions that continue to provide legal sanction to discrimination against people affected by leprosy.

Dhvani Mehta, a senior resident fellow at Vidhi, says: “People with leprosy are disqualified from being members of academic councils or governing boards in a number of laws relating to statutory universities, holding public office, or contesting local body elections. Then, there are some [laws] that prevent persons affected with leprosy from accessing public places like markets or travelling in public transport."

Further, over the last few years, the legislature and judiciary are working to correct the problem of discrimination sanctioned by law against persons affected with leprosy, given the developments curing the disease and the knowledge that it is not as contagious as previously imagined.

To this end, the 256th report titled Eliminating Discrimination against Persons Affected by Leprosy deals with a situational analysis of the disease and has annexed to it a proposed model draft bill based on the recommendations in the report. In order to specifically address the discrimination of leprosy-affected persons, in 2017, member of Parliament and senior advocate KTS Tulsi moved a private member bill in the Rajya Sabha, which prescribes punishment for those who violate its provisions, and safeguards the rights of persons affected by leprosy to employment, against eviction and more.

“It is abhorrent to discriminate against a person because of an ailment for which, certainly, he cannot be blamed," says K.T.S. Tulsi. “The term ‘leper’, which continues to be used in the provisions of several central and state enactments, is nothing less than a profanity for people affected by leprosy," he adds.

Realistic goals

Kumar of the NLEP believes that a concerted and continued effort, both to spread awareness and to actively detect and combat the disease, will lead to a leprosy-free India by 2030. The re-integration of leprosy-affected individuals from secluded colonies and spreading awareness is on top of his agenda. Nikita Sarah, head of advocacy and communication at the Leprosy Mission Trust India, says, “The perception is that if you have leprosy, you end up in the colony. Whereas in the leprosy colonies, they are completely aware. In the 750 colonies or 135,000 new cases, just about 1% cases have come from the colonies. The rest are coming from the general community."

Still, the stigma associated with leprosy runs deep, and getting a celebrity to take up the cause continues to be a challenge. “When you use people with deformity to show work being done to combat leprosy, that is unfair," Kunju says.

Back in the heart of Delhi’s leprosy colony, Ashok adjusts his bright pink shirt as he gets up to go back home and await his son’s return. “Bihar aur Bengal mein jis thaali mein khaana dete the woh thali phek dete the, bus mein bolte the ‘isko bahar phek do’ (In Bihar and Bengal they would throw away the plate I ate in. They would ask the conductor to throw me out if I sat in a bus)," he says. “Dilshad garden mein jahan bhi kaam karta hoon, nafrat nahi hai. Woh khaana apni thaali mein dete hain (In Dilshad garden, wherever I work, there is no hate. They even give me food in their plate at home), Ashok adds.

He traverses the narrow by-lanes, exchanging greetings with men on donated wheelchairs, and a group playing cards, sprawled on a bedsheet laid out on the side of the road. There's no sign of the disease in this circle—only cheery smiles as each one hopes to win the next hand. And victory is no stranger to them either. They have all beaten leprosy.