India Restarts Battle Against Leprosy

Courtesy of LEPRA Society A leprosy patient speaking about her problems during an awareness campaign in Hyderabad, Andhra Pradesh, on Apr. 3.

MUMBAI, Maharashtraâ€" At a referral center in Mumbai, a 19-year-old college student rolls up the sleeve of her tunic to reveal an inch-long red lesion surrounded by a negligible skin discoloration on her arm. She pinches the pigmented patch, then prods at it with an accusing finger.

“I don’t feel anything. It’s numb,” she says. It is the only visible indicator that she is suffering from leprosy, formally known as Hansen’s disease.

It’s most likely that the young woman, who says she hopes to be a fashion designer one day, will not suffer the ravages and physical disfigurement that the Mycobacterium leprae is known to inflict on its victims. But that is not why the doctor treating her is frowning while he pores over her file. It’s a new case, and that’s cause for concern.

India has declared that it has leprosy under control, but the numbers are showing a slow but clear rise in new cases. Outside the examination room of the nongovernment organization Bombay Leprosy Project, a carpenter, a migrant worker from Orissa and a 10-year-old boy accompanied by his father wait their turn. All are being treated for leprosy.

In the fiscal year that ended on March 31, the government’s National Leprosy Eradication Programme recorded an annual new case detection rate of 10.78 for a population of 100,000 people - an increase of 4.15 percent from the previous fiscal year. This is the first time in at least six years that India has officially acknowledged a rise in new cases detected.

Around 135,000 men, women and children living in India were diagnosed with leprosy in 2012-13, according to the World Health Organization, which made up nearly 58 percent of newly diagnosed leprosy cases in the world.

Doctors and scientists working in this field are not surprised and say that the number of people afflicted with the disease in India is much higher than what the government is willing to acknowledge.

“One of the reasons is political pressure to keep the numbers down,” said Dr. Vanaja Shetty, a senior scientist with the Foundation of Medical Research in Mumbai. (Officials at the National Leprosy Eradication Programme declined repeated requests for comment.)

By 2002, India was under heavy international pressure to reduce the leprosy burden and meet the World Health Organization’s criteria for elimination, which uses the prevalence rate. If a country can show it has fewer than one case out of every 10,000 people, it is considered to have eliminated - but not eradicated â€" the disease.

India integrated its leprosy program into the mainstream health care sector and set a minimum number of new cases that field workers and doctors responsible for surveying an area had to detect every year. In 2005, India was able to eliminate leprosy according to the W.H.O. standard.

Shortly afterward, the government’s strategy shifted to voluntary reporting, leading to a decline in surveillance and detection. When leprosy was integrated into the primary health care system, doctors and government field officers were not adequately trained to identify the disease in its early stages.

The government’s acknowledgement of an increase in the detection rate is the result of the constant warnings and haranguing from nongovernmental organizations and institutions, said Dr. Shetty.

In 2011, the W.H.O. warned India that the disease was spreading, and that same year, the government’s leprosy eradication department began active detection surveillance in high endemic areas. Instead of relying on voluntary reports, government officials initiated door-to-door surveys. These measures account for the rise in new cases seen in the government statistics, said Dr. V.V. Pai, director of the Bombay Leprosy Program.

Officially, the National Leprosy Eradication Programme puts the current prevalence rate at 0.73 per 10,000 people. The previous year, it was 0.68. A closer look at the data, however, shows that many states still have a very high prevalence of the disease, some even crossing the World Health Organization’s standard for eliminating leprosy.

Courtesy of LEPRA Society A leprosy patient being treated by a doctor at a medical camp in Hyderabad, Andhra Pradesh, on Sept. 21, 2012.

In the states of Bihar, Maharashtra and West Bengal, more than one person out of 10,000 has leprosy. The Union Territory of Dadra and Nagar Haveli in western India, between Gujarat and Maharashtra states, has the highest prevalence rate of 3.6, followed by Chhattisgarh at 2.13. Gujarat hovers on the borderline at 0.96.

What is so frustrating about the inability to eradicate leprosy, not just in India but globally, is that the disease is treatable. Dr. Pai said the Mycobacterium leprae is slow to act and responds well to a combination of antibiotics called multidrug therapy, which has a 99 percent cure rate. Leprosy is one of the least infectious of all diseases, and most people have an innate immunity to the bacteria, he added.

Other impediments to eradicating leprosy are the complex nature of the disease, its long incubation period of five to 15 years, and the inability to break the cycle of transmission, which is not fully understood, although it’s suspected that the bacteria spreads through the air. All this is compounded by either a denial or lack of awareness among those affected.

The Bombay Leprosy Program, which has been working in this field for 37 years, monitors a vast stretch of Mumbai, covering a population of approximately 2 million, including the residents of Dharavi, one of the largest slums in Asia. Last year, the doctors at the program detected around 100 new cases.

A decade ago, the organization expanded to parts of rural Maharashtra abutting Mumbai, the state’s capital. In the interiors of Maharashtra, those affected lack access to timely intervention and are often forced out of their villages with the onset of the physical deformities that mark the disease’s unchecked progress.

In 2009, Dr. Shetty and her team published a damning report in the journal Leprosy Review, showing that those affected by the disease in parts of rural and urban Maharashtra was three to nine times more than the official figures.

For six months in 2007, the Foundation of Medical Research screened a little under 700,000 adults and children in one rural (Raigad district)and one urban area (a part of Mumbai) in Maharashtra. Dr. Shetty recorded a prevalence rate of 6.7 per 10,000 in the rural district and 2.6 in the urban areas surveyed. The state average at the time was 0.7 per 10,000.

“A third of those afflicted were children. Nothing has improved. Even today, when I’m on fieldwork, I see five to six children affected every year,” she said.

Dr. Shetty is currently part of a three-year study tracking leprosy patients, who at some stage were cured of the disease, only to see it return. The National Leprosy Eradication Programme does not consider former leprosy patients who have had a relapse as new cases.

Children, who are most susceptible to the microbacteria, are indicators of whether a disease has spread in a neighborhood. So every year, field workers, doctors and community members at the Bombay Leprosy Project survey public and municipal schools that fall under the organization’s purview. If they find a positive case, family members and neighbors in a 200-block radius are then examined.

The Bombay Leprosy Project’s nonmedical supervisor, Nanda Ajayan, has spent the past 31 years trudging through the chawls and tenements of Mumbai looking for new leprosy cases and relapsed ones and checking up on those with physical disabilities.

It’s why on a hot afternoon earlier this month she climbed four floors of a tenement building to meet an elderly couple and their family. The husband, 75, has been cured of leprosy, but the disease damaged his peripheral nervous system.

Leprosy bacteria damage the peripheral nerves, resulting in loss of sensation in the area. If left untreated or not caught in time, surrounding muscle wastes away. In this man’s case, even as the leprosy bacteria were killed and rendered ineffective through drugs, they resulted in an inflammation that destroyed nerve fibers in his feet. With the loss of feeling in the area, the soles of his feet are marked with wounds and sores.

As a volunteer dressed his sores, a neighbor unabashedly peered into the room that serves as the family’s bedroom, hall and kitchen. “She doesn’t know that we are from Bombay Leprosy Project,” said Ms. Ajayan, who gives curious onlookers an evasive answer when they ask her why she is here. “The neighbors don’t know that family living in this room had leprosy.”

There was no need for secrecy at her next stop, a leprosy colony called Madraswadi in central Mumbai, named because most of its residents are migrants from Tamil Nadu. The warren of passageways and rooms house a generation of elderly people who bear the marks of the disease.

Ms. Ajayan stopped to give a bag of adhesive bandages and dressing material to Kupaye Naresh, an elderly lady, whose fingers have curled inwards. It’s the claw hand, a trademark of leprosy, called kushtarog in Hindi. Outside, an elderly man sat on a cot.

“We are all healthy now. Our children are healthy, they have married healthy people, our grandchildren are healthy,” he said, limping back to his room.

Anjali Thomas is a freelance journalist based in Mumbai.