As a teenager, Tanu Bai would hurt her hands while cooking but feel no pain. “I couldn’t feel anything. My hands and feet were numb,” she says. “I’d burn them but wouldn’t be able to tell.” Her arms would sometimes become horribly swollen, and then there were the white spots dotting her body.
Without treatment, the muscles and bones in her fingers slowly disintegrated and were reabsorbed into her body, reducing her hands to stubs. Orphaned at 10, she had no family to take care of her.
Diagnosed with leprosy and pushed out by her fearful community, Tanu Bai moved to Satya Jeevan Leprosy Society in Delhi, one of about 800 “leper colonies” still active in India.
Now in her 60s, she has been living at the colony for about 40 years. “We feel comfortable living together,” she says. “Nobody treats us badly now.”
But the environment can be a different matter. Speaking about Delhi’s summer heat, which reached as high as 50C (122F) this year, she adds: “We have to be careful because we can’t feel that we’re burning.”
There are more than 200,000 new leprosy cases reported each year, with 60% of them just in India. In January 2023, the Indian government launched the Leprosy Mukt Bharat campaign, promising to make the country free of leprosy by 2027 – three years earlier than the World Health Organization’s target.
Charity leaders and medical workers, however, are sceptical that India will succeed in eliminating the disease, given limited training, a shelved 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 grandstanding than genuine commitment, with undercounting of patients to meet targets, part of a larger trend of public health focused on politics rather than patients.
“The leaders think that, if India becomes leprosy-free, other countries will look at them better,” Ranavare says. “I don’t think that they are doing this thinking about people with leprosy.”
Also known as Hansen’s disease, leprosy is a chronic infectious disease caused by Mycobacterium leprae, which can occur at any age and affects the skin, eyes and peripheral nerves. Once thought to be easily transmittable, 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 stigmatised diseases, it has existed in India for thousands of years and is frequently mentioned in the Bible; in Leviticus, for example: “The leprous person … is unclean. He shall live alone. His dwelling shall be outside the camp.”
Today, leprosy has disappeared from most of the world, largely because of the introduction of multidrug therapy in the 1980s and a global campaign. In 2005, India celebrated its own elimination achievement, as cases dropped from more than 4m in 1982 to only 200,000 – or about one for every 10,000 people.
“That success story is seen nowhere in the world,” says Vishwa Katoch, former secretary of medical research at India’s health ministry. “We thought that leprosy has come down so much that it is no longer a public health problem.”
It encouraged the Indian government to shutter leprosy-specific programmes, says Utpal Sengupta, a researcher with Leprosy Mission India. As funding quickly dried up, the government stopped looking for people with the disease, assuming the healthcare system could take care of the remaining cases.
While Ritul Choudhary, a dermatologist at RML hospital in Delhi, says that while leprosy elimination is possible, India’s 2027 goal is “very far-fetched” and “not going to happen” because the public and doctors have not been mobilised, or real investments put into prevention.
In his weekly clinic, Choudhary sees 30 leprosy patients, and almost all of them had never heard of the disease before their diagnoses. While understanding of HIV and tuberculosis is good, “leprosy is on the back foot”, he says.
“A lot of people won’t even know they have leprosy for a long time; they will come in at a very, very late stage.”
“After 2005, awareness has tapered off because there are no resources being put in,” says Prasant Naik, head of Lepra Society India. Bollywood actors had spoken about leprosy treatments on TV; newspapers and radio carried ads. But now, he says: “Everything has fallen through the cracks.”
Over the past two decades, leprosy diagnosis and treatment has also not been taught in medical schools, Naik says. “The new breed of doctors and medical officers who come in – they have no clue about leprosy.” So people can 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 vaccine, a homegrown biotechnology, is cost-effective although offering only 60% protection.
Katoch successfully pushed for a vaccine rollout in 2019, plans that were shelved by Covid and never restarted. “It is somehow a misjudgment on the part of some people who’ve been making policy decisions,” he says.
Still, Katoch is optimistic and, despite a sluggish start, hopes the Indian government will intensify the campaign. “I have no doubt: if the government is saying 2027, the government can cover it.”
Ranavare worries that it may be tempting for the authorities to undercount leprosy cases to ensure they hit targets. “The government needs to do leprosy recognition properly – it’s really important,” she says. “Otherwise, how many years will it be with leprosy never eradicated?
“At the national level, everyone is saying, ‘It will happen, it will happen.’ But look, the actual work has to take place at the grassroots level.”
Her colleague Mohan Arikonda, a technical support officer at Apal, says this scenario is only too real: “The instructions to their medical officers is to hide the cases. We hear this directly from the nurses.”
Sengupta also believes there are efforts to play down the statistics and Choudhary suspects the official case numbers are “definitely lower than what actually exists”, given anecdotal experience.
Naik holds out 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 might be concentrating seven years’ worth of resources into a compressed timeframe, making the case in 2027 when they fail, “the light at the end of the tunnel is visible; let’s allocate some more”.
The Indian health ministry did not respond to requests for comment.
