A renewed fight against leprosy

In India, Rotary members dispel myths and promote treatment

By Kamala Thiagarajan

On the outskirts of India’s capital of New Delhi, the satellite city of Gurugram is a bustling technology and financial hub that’s home to some of the country’s largest companies, upscale residential developments, and popular entertainment districts. In the shadow of that wealth, there also lies a community of people with leprosy — one of hundreds that persist in India even though the disease is not highly contagious and is easily curable today.

A Gurugram businessman and Rotarian, Tridibes Basu, first visited the settlement several years ago. He knew such places existed yet was unprepared for the scale of poverty and suffering he encountered. “People were living without access to health care, clean water, and basic sanitation,” he says. “Most of them had to beg for a living, because the very mention of leprosy sparked fear. It was seen as a curse and no one wanted to hire someone suffering from it.”

Global efforts to eliminate leprosy have made tremendous strides in recent decades, with a 95 percent reduction in symptomatic case prevalence and the disease’s disappearance from much of the world. However, India remains one of the few strongholds of the disease, with around 100,000 new leprosy cases detected every year, roughly half of the 200,000 cases recorded globally.

Also known as Hansen’s disease, leprosy is caused by a bacterial infection that often starts with numb patches of discolored skin and can progress to destroy nerves and muscles. It’s curable with a multidrug therapy donated by the pharmaceutical company Novartis and provided for free through the World Health Organization. But if not treated in time, even patients who are cured can be left with serious permanent disability and disfigurement, leading to social ostracism and stigma so intense that some people in India self-exile in the country’s more than 700 leprosy “colonies.”

“Leprosy is one of the world’s oldest diseases, but in many parts of the world, the greater suffering comes not from the illness itself, but from the stigma and discrimination that follows. Though curable, those affected are too often isolated, misunderstood, and denied basic dignity,” says Nayan Patel, a longtime Rotarian in England who is an ambassador for Lepra, a UK-based international charity that diagnoses, treats, and rehabilitates people with leprosy.

Because the leprosy bacteria cannot be cultured in the lab, it’s a challenge to study and remains something of a mystery. Scientists believe it is spread by droplets from the nose and mouth. But it is not highly contagious and around 95 percent of the population is naturally immune and able to fight off infection. Still, stigma, misinformation, and fear remain.

Basu, a member of the Rotary Club of Delhi South, saw the outcomes of this firsthand on his visits to the leprosy settlement in his home city. There he became friendly with a man in his 50s who stood out for his cheerful disposition and the fact that he was one of the few people there with a well-paying job, as a security guard at a nearby establishment. One day, Basu learned the man had lost his job and started needing a wheelchair. Six months later, he was bedridden. “His condition had grown progressively worse,” says Basu, who became his Rotary district’s chair for leprosy control and alleviation in 2024. “I learned that once he started working, he had stopped taking his medication, a common problem we see among patients who just aren’t aware enough of how to manage their condition.”

In 2019, Basu’s club and two others, Delhi South End and New Delhi, formed an alliance with Lepra, the charity, to raise awareness about how to identify early symptoms, to advocate, and to support those with disability caused by the disease. Soon the Rotary Club of Delhi Regency Next joined as well.

Deepak Kapur, a member of the Delhi South club who, as chair of the India PolioPlus Committee, played a pivotal role in India achieving polio-free status a decade ago, was surprised during a meeting with Lepra representatives in 2019 to learn that leprosy was still a problem. “I had always thought that leprosy was relegated to the pages in history books, and the last I’d heard about it was in the film Ben-Hur,” says Kapur. “I was shocked.”

Working with Lepra, Rotary members began to tackle relief efforts in India under what Kapur calls “the four pillars.” First was an effort to create awareness of leprosy among the public and dispel myths to let people know it is curable and is not spread through casual contact. “We spoke about the nature of the disease,” says Kapur. “For instance, not too many people know that the government of India gives the multidrug therapy for free to patients. And within 72 hours of its administration, the person who’s taking it stops being a spreader of the disease.”

They extended their awareness drives to health care workers, including some doctors. So far, they have trained 500 of India’s community health workers, the frontline force of trusted community members who deliver basic care, to identify signs of leprosy.

Finding cases was the next priority. Through clinics and awareness drives, they did community outreach to identify individuals with signs of leprosy who may have been unaware or afraid to seek treatment, encouraging them to get care. The disease can be hard to diagnose and is often missed. It also has a very long incubation period with symptoms sometimes emerging up to 30 years after exposure.

In the fourth pillar of the plan, the Rotarians helped those left disabled. For instance, they arranged for ulcer management and mobility aids like specialized footwear and wheelchairs, as well as reconstructive surgery, Kapur says.

The Rotary partnership expanded to collaborate with the Leprosy Mission Trust India, which runs 15 hospitals across the country, as well as residential homes and vocational training centers that help around 1,200 people find jobs each year.

Through a center in the city of Noida, east of New Delhi, the Rotary clubs have worked with the nongovernmental organization to train around 120 people affected by leprosy and other disabilities to qualify to work as cosmetologists and IT professionals.

One of the first students to enroll was Disha Santhosh, 17. She grew up in a leprosy settlement in the Dilshad Garden area of Delhi, one of the largest of its kind in India and home to thousands of people affected by leprosy and their family members. Here most households face persistent financial hardship. Her father was affected by leprosy, but he had long been the sole breadwinner, working tirelessly as a plumber to provide for the family. To meet even basic needs, her father had to take out a loan, deepening the family’s financial crisis. But through the training center, Santhosh completed certification in cosmetology in March and is now employed, offering a vital lifeline to support herself and her parents.

Though leprosy stubbornly persists, there is hope for prevention. A possible vaccine called LepVax is in development and has shown promising results in preclinical tests against the Mycobacterium leprae bacteria that causes the disease. But until a vaccine materializes, much support is required.

“As Rotarians, committed to service and inclusion, we must come together to raise awareness, support early diagnosis and treatment, and challenge the harmful myths that still surround leprosy. Let us unite to end both the disease and the injustice,” says Patel. “Together, we can restore hope, dignity, and opportunity.”

This story originally appeared in the October 2025 issue of Rotary magazine.

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