AAs a teenager, Tanu Bai would burn her hands while cooking but feel no pain. “I couldn’t feel anything. My hands and feet were numb,” she says. “I would burn them, but wouldn’t be able to tell.” Her arms sometimes became terribly swollen, and then there were the white spots that dotted her body.
Without treatment, the muscles and bones in her fingers slowly disintegrated and reabsorbed into her body, reducing her hands to stumps. She was orphaned at 10 and had no family to take care of her.
Diagnosed with leprosy and ostracized by her fearful community, Tanu Bai approached the Satya Jeevan Leprosy Society in Delhione of about 800 “leper colonies” still active in India.
Now in her 60s, she has lived at the colony for about 40 years. “We feel comfortable living together,” she says. “No one treats us badly now.”
But the environment can be a different matter. Talking about Delhi’s summer heat, which has reached as high as 50C (122F) this year, she adds: “We have to be careful because we can’t feel like we’re burning.”
There are more than 200,000 new leprosy cases reported every year, with 60% of them only in India. In January 2023, the Indian government announced the Leprosy Mukt Bharat Campaignwhich promises to make the country free of leprosy by 2027 – three years earlier than the World Health Organization‘s target.
However, charity leaders and medical professionals are skeptical India will succeed in eliminating the disease, given limited training, an aborted vaccination rollout and the lack of any awareness campaign.
Maya Ranavare, president of the Association of people affected by leprosy (Apal), says this push to rid the country of the disease by 2027 is more than genuine commitment, with undercounting of patients to meet targets, part of a larger trend in public health that relies on politics rather than patients are focused.
“The leaders think that if India becomes leprosy-free, other countries will take a better look at them,” says Ranavare. “I don’t think they do it to think about people with leprosy.”
Also known as Hansen’s disease, leprosy is a chronic infectious disease caused by Mycobacterium lepraewhich can occur at any age and affect the skin, eyes and peripheral nerves. Once thought to be easily transmitted, it is now known to be difficult to catch, requiring frequent and close contact with an affected person. It is fully curable and early treatment can prevent disability.
One of the world’s most stigmatized diseases, it has existed in India thousands of years and is frequently mentioned in the Bible; in Leviticus, for example: “The leper… is unclean. He will live alone. His residence must be outside the camp.”
Today, leprosy has disappeared from most of the world, largely due to the introduction of multidrug therapy in the 1980s and a worldwide campaign. In 2005, India celebrated its own elimination performance as business slumped more than 4m in 1982 to only 200,000 – or about one for every 10,000 people.
“That success story is not seen anywhere in the world,” says Vishwa Katoch, former secretary of medical research at India’s Ministry of Health. “We thought that leprosy had declined so much that it was no longer a public health problem.”
This prompted the Indian government to stop leprosy-specific programs, said Utpal Sengupta, a researcher at Leprosy Mission India. As funding quickly dried up, the government stopped looking for people with the disease, assuming the health care system could take care of the remaining cases.
While Ritul Choudhary, a dermatologist at Delhi’s RML Hospital, says that while eliminating leprosy is possible, India’s 2027 goal is “very far-fetched” and “not going to happen” because the public and doctors are not mobilized not, or real investments are put in prevention.
In his weekly clinic, Choudhary sees 30 leprosy patients, and almost all of them had never heard of the disease before their diagnosis. While understanding of HIV and tuberculosis is good, “leprosy is on the back foot”, 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 decreased because no resources were put in,” says Prasant Naik, head of Leprosy Society India. Bollywood actors talked about leprosy treatments on TV; newspapers and radio carried advertisements. But now he says: “Everything has fallen through the cracks.”
Over the past two decades, leprosy diagnosis and treatment have also not been taught in medical schools, says Naik. “The new breed of doctors and medical officers coming in – they have no idea about leprosy.” People can therefore 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 points to the MIP vaccinea home-grown biotechnology, is cost-effective although it only provides 60% protection.
Katoch successfully insisted a vaccine rollout in 2019plans suspended by Covid. “It is somehow a misjudgment of some people who made policy decisions,” he says.
Still, Katoch is optimistic and, despite a sluggish start, hopes the Indian government will step up the campaign. “I have no doubt: if the government says 2027, the government can cover it.”
Ranavare worries that it may be tempting for the authorities to underestimate leprosy cases to ensure they hit targets. “The government must do leprosy recognition properly – it’s really important,” she says. “Otherwise, how many years will it be with leprosy that has never been eradicated?
“At the national level, everyone says: ‘It will happen, it will happen.’ But look, the real 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 it directly from the nurses.”
Sengupta also believes there are attempts to play down the statistics and Choudhary suspect the official case numbers is “definitely lower than what actually exists”, given anecdotal experience.
Naik has little hope that India will eliminate leprosy by 2027, but does see the benefit of an ambitious goal that could attract the international and philanthropic funding that disappeared after 2005.
Given the WHO’s 2030 target, the government may be concentrating seven years of resources in a compressed timeframe, making the case in 2027 when they fail, “the light at the end of the tunnel is visible; let’s award some more”.
The Indian health ministry did not respond to requests for comment.
