India

Vaccine brings new hope to India's largest leprosy colony

People inside the Tahirpur colony Image copyright Rebecca Hobson
Image caption Around 5,000 families call Tahirpur home, making it the largest of India's more than 800 leprosy colonies

With nearly 60% of all new cases of leprosy every year being recorded in India, the Indian government has launched an intensive programme to eliminate the dreaded disease, writes journalist Rebecca Hobson.

When Muhammad Shafiq Siddique came home to find his bedding thrown into the street, he knew his time was up. At the time, he was 16 years old.

"My family didn't accept me and the village people didn't want me there. I was very hurt so I had to go," recalls the 67-year-old part-time Urdu teacher.

Since Siddique had contracted leprosy, he was banished from his community. He now lives in a concrete hut in Tahirpur, a government appointed leprosy colony on the outskirts of north Delhi.

Like many of his neighbours, Siddique is cured. But it's his physical appearance - his misshapen nose, hands and feet, and the social stigma the disease carries - that prevents him from living outside the colony. And besides, this is now home.

This ostracisation has fuelled the age-old stigma that's so tightly bound to the disease, helping it to thrive in a country where free and effective treatment has been made available since 1983.

Image copyright Rebecca Hobson
Image caption When he was 16, Muhammad Shafiq Siddique came home to find his bedding thrown into the street

Around 5,000 families call Tahirpur home, making it the largest of India's more than 800 leprosy colonies.

Despite its cramped living conditions, open sewers and piles of rubbish, it's also the most developed of the leprosy colonies as it has concrete huts, water pumps and working toilets.

But now, in what will hopefully become a watershed moment for leprosy, the government is rolling out the world's first leprosy vaccine in two of the worst affected states, Gujarat and Bihar, with a plan to implement it nationwide in the future.

Prof Gursaran Prasad Talwar first developed the Mycobacterium indicus pranii (MIP) vaccine in the 1980s at the National Institute of Immunology, an autonomous state-funded institution under the government's Department of Biotechnology.

In 2005, the institute carried out field trials in Uttar Pradesh where 24,000 people were vaccinated. The results were extremely promising; 68.6% were protected for four years, and 59% were protected for eight years.

In the same year, however, the World Health Organisation declared leprosy officially eradicated.

Image copyright AFP
Image caption Ostracisation has fuelled the age-old stigma that's so tightly bound to the disease

For India, this declaration was little short of disastrous. Leprosy, says Dr Mary Verghese of The Leprosy Mission Trust India, "fell off the radar."

"Earlier [leprosy treatment] was a vertical programme," she explains.

"That means we had designated people and treatment through special activities. But since 2005 it has been integrated into the general healthcare services, which means we never went out actively to look for cases. People had to come voluntarily into the health care system."

But few people came. And when they did, it was often once the disease was in a late stage of development and they were suffering from irreversible disabilities with telltale marks like shortened toes and fingers from where the infected person's cartilage is absorbed into the body.

"People didn't focus on it (leprosy) after 2005, and that's why we've seen about 125,000 new cases reported every year. And the number of cases with disability has been steadily increasing also."

The MIP vaccine is part of a fresh attempt to eliminate leprosy, explains Soumya Swaminathan, the director general of the Indian Council of Medical Research which is working with the government on rolling it out.

Image copyright Rebecca Hobson
Image caption Experts believe environment also plays a role in the transmission of leprosy

An ambitious house-to-house survey was also launched in July and the Leprosy Case Detection Campaign promises to screen more than 32 million people in problem areas.

Dr Swaminathan, who says the vaccine is totally safe, highlights its effective use for other treatments, including bladder cancer.

"The role of the council is to test it in different conditions, for the healing of lesions and among people in contact with leprosy patients. This isn't a trial, it is field implementation research."

But vaccination is only part of the solution. Sanitation must be improved too, believes Dr Utpal Sengupta, a leading scientist in the field.

"Transmission is human-to-human contact, but we think environment is also playing a role."

Dr Sengupta, who has studied the disease for more than 40 years, points to findings that show how the bacteria that causes leprosy - Mycobacterium leprae - can live outside a host for prolonged periods in wet soils and pools of water.

He believes that in rural areas where groups of people live with the disease and bathe in communal pools, M. leprae can be transmitted to the water and even live in the soil.

Image copyright Rebecca Hobson
Image caption 18-year-old Somu Kumar who has travelled from Bihar to Delhi for treatment

Back in Tahirpur, the end of the monsoon season is dry and not too hot, so men play cards, children run around and women chat in doorways.

These would be everyday scenes if it weren't for the white bandages wrapped around the club-shaped feet of a man having his hair cut, or the stumps in place of hands belonging to the woman talking to him.

Here, we meet 18-year-old Somu Kumar who has travelled from Bihar to Delhi for treatment. He is alone and looks disorientated, tired and much younger than his age.

His foot is bandaged and he hides his hands as he talks. The leprosy began when he was six, he says. He's taken the prescribed multidrug therapy and is cured, but has ongoing complications with his feet, like so many leprosy sufferers.

As we talk, he becomes upset, particularly when asked about his village and the reactions from the people there. He has studied up to 10th grade, he says, changing the subject - an important turning point in the Indian education system.

So what will he do next?

"Why would I carry on?" he asks with a tearful shrug.

Discriminatory laws

The Leprosy Mission Trust India holds vocational training courses for people like Kumar, to help them find work and restore their confidence.

Projects like these play a crucial part in reforming people's understanding of the disease, but nobody denies that there's still a long way to go.

Common misconceptions are reinforced by outdated and discriminatory laws like the 1898 Lepers Act brought in during the British rule.

Under this law a man or a woman can file for divorce if their spouse is diagnosed with leprosy. Other laws prohibit patients from holding driving licenses or travelling on trains.

Now the Leprosy Mission Trust is working with the government to ban these laws.

"The stigma has been there since time immemorial," says Dr Verghese. "Many people think it's a curse from God, that it's hereditary, but there's a very effective treatment.

"The myths and misconceptions still prevail. The fear is within themselves."