AAs a teenager, Tanu Bai burned her hands while cooking, but felt no pain. “I couldn’t feel anything. My hands and feet were numb,” she says. “I would burn them, but I wouldn’t know.” Her arms sometimes became terribly swollen, and then there were the white spots on her body.
Without treatment, the muscles and bones in her fingers slowly disintegrated and reabsorbed into her body, turning her hands into stumps. She was orphaned at the age of ten and had no family to care for her.
Diagnosed with leprosy and driven out by her fearful community, Tanu Bai moved to the Satya Jeevan Leprosy Society in Delhi, one of about 800 ‘leper colonies’ still active in India.
She is now in her sixties and has lived in the colony for about forty years. “We feel comfortable living together,” she says. “No one is treating us badly now.”
But the environment may be a different matter. Speaking about the summer heat in Delhi, which reached as high as 50 degrees Celsius this year, she added: “We have to be careful because we cannot feel that we are on fire.”
There are more than one 200,000 new leprosy cases reported annually, with 60% of it is in India alone. In January 2023, the Indian government launched the Leprosy Mukt Bharat Campaignpromising to make the country leprosy-free by 2027 – three years earlier than the World Health Organisation‘s goal.
However, charity leaders and medical workers are skeptical that India will succeed in eradicating the disease given limited training, vaccination rollout and lack of any awareness campaign.
Maya Ranavare, Chairman of the Association of people affected by leprosy (Apal), says this attempt to rid the country of the disease by 2027 is more grandiose than genuine commitment, with the number of patients being too low to meet targets, part of a larger public health trend that is becoming more widespread on politics then focuses on patients.
“The leaders think that if India becomes leprosy-free, other countries will look at them more closely,” Ranavare said. “I don’t think they do this thinking about people with leprosy.”
Leprosy, also known as Hansen’s disease, is a chronic infectious disease caused by Mycobacterium lepraewhich can occur at any age and affects the skin, eyes and peripheral nerves. The disease was once believed to be easily transmissible, but is now known to be difficult to catch and requires frequent and close contact with an affected person. It is completely curable and early treatment can prevent disability.
It is one of the most stigmatized diseases in the world and already exists in India thousands of years and is often mentioned in the Bible; for example, in Leviticus: “The leper… is unclean. He will live alone. His dwelling will be outside the camp.”
Today, leprosy has disappeared from most of the world, largely due to the introduction of leprosy multidrug therapy in the 1980s and a global campaign. In 2005, India celebrated its own elimination achievement as the number of cases fell over 4m in 1982 to just 200,000 – or about one in every 10,000 people.
“You don’t see that success story anywhere in the world,” says Vishwa Katoch, former secretary of medical research at the Indian Ministry of Health. “We thought leprosy has declined so much that it is no longer a public health problem.”
It encouraged the Indian government to end leprosy-specific programs, says Utpal Sengupta, a researcher at Leprosy Mission India. With funding quickly drying up, the government stopped looking for people with the disease, assuming the health care system could care for the remaining cases.
While Ritul Choudhary, a dermatologist at RML Hospital in Delhi, says that while the elimination of leprosy is possible, the Indian target for 2027 is “very far-fetched” and “not going to happen” because the public and doctors have not been mobilized, whether no real investments have been made. deploy prevention.
At his weekly clinic, Choudhary sees 30 leprosy patients, almost all of whom had never heard of the disease before their diagnosis. While understanding of HIV and tuberculosis is good, “leprosy takes a back seat,” he says.
“Many people will not even know they have leprosy for a long time; they will come in at a very, very late stage.
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“After 2005, awareness has declined because no resources are being put towards it,” said Prasant Naik, head of the Leprosy Society India. Bollywood actors had talked about leprosy treatments on TV; newspapers and radio carried advertisements. But now he says: “Everything has fallen through the cracks.”
For the past two decades, the diagnosis and treatment of leprosy has also not been taught in medical schools, says Naik. “The new generation of doctors and medical officers coming in have no idea about leprosy.” Thus, people may be misdiagnosed, leading to greater disease progression and potential community infections.
Katoch, who helped write the government’s strategic plan for a leprosy-free India, believes it is time for a vaccination campaign – research suggests the MIP vaccinea homegrown biotechnology, is cost-effective even though it only offers 60% protection.
Katoch successfully insisted a vaccine rollout in 2019plans that were shelved due to Covid. “It’s somehow a misjudgment by some of the people who have made policy decisions,” he says.
Still, Katoch is optimistic and hopes, despite a slow start, that the Indian government will intensify the campaign. “I have no doubt in my mind: if the government says 2027, the government can cover it.”
Ranavare worries that it may be tempting for authorities to underestimate leprosy cases to ensure targets are met. “The government must do leprosy recognition correctly – that is very important,” she says. ‘How many years will it take before leprosy is never eradicated?
“At the national level, everyone is saying, ‘It will happen, it will happen.’ But look, the actual work has to happen at the grassroots level.”
Her colleague Mohan Arikonda, a technical support officer at Apal, says this scenario is all too real: “The instructions to their medical officers are to hide the cases. We hear this directly from the nurses.”
Sengupta also believes that attempts are being made to downplay the statistics and Choudhary guesses the official case numbers are “definitely lower than what actually exists,” given anecdotal experiences.
Naik has little hope that India will eradicate leprosy by 2027, but sees the benefit of an ambitious target that could attract the international and philanthropic funding that disappeared after 2005.
Given the WHO 2030 target, the government could concentrate seven years’ worth of resources in a compressed time frame, with if they fail in 2027, “the light at the end of the tunnel will be visible; let’s assign a few more.”
India’s health ministry did not respond to requests for comment.