Leprosy Mission: aiming for zero transmission of disease that still discriminates
By Stephen Cauchi
April 27 2020
Dr Mary Verghese, executive director of The Leprosy Mission Trust India, who visited Melbourne at the start of the year.
The head of India’s largest non-government leprosy organisation visited Anglican churches in Melbourne earlier this year to raise awareness of the disease, including the 100-plus laws in India that discriminate against people with leprosy.
Dr Mary Verghese, the executive director of The Leprosy Mission Trust India, said that despite three million global cases she was hopeful of reaching a goal of zero transmission by 2035.
Dr Verghese visited St Chad’s Anglican in Chelsea and Deep Creek Anglican in Doncaster in her Australian visit to highlight the advances being made against leprosy.
The Leprosy Mission, a Christian organisation represented in 30 countries, is the world’s largest and oldest leprosy organisation.
Globally, “we report about 120,000 to 225,000 new cases every year so there’s quite a bit of leprosy there,” Dr Verghese told TMA.
“India contributes nearly 60 per cent of the global burden of leprosy.”
Dr Verghese said that even though leprosy had been around for thousands of years, there was still much ignorance about the disease all over the world.
“There are many myths associated with it. People think it’s a curse from God, it’s because of the sins you have committed, or as a consequence of the bad acts that you have done.
“Because there is no awareness about leprosy, people do not report it early and leprosy just manifests as a skin patch – there’s loss of sensation in the skin patch.
“Because most people don’t know about it and they don’t know the significance about it they do not report early.
“It’s only when the nerves are affected and there is loss of sensation, or there is muscle paralysis and there is disability – clawing of the hands or foot drop or your eyes are affected – that people report for treatment.”
Leprosy is a contagious disease that damages nerves and can lead to skin lesions and deformed limbs. It has existed for thousands of years and is mentioned in both the Old and New Testaments. It currently afflicts people around the world, including in South-East Asia, South America and Africa.
“It’s a disease that has been reported in almost all scriptures of every religion but it’s still a reality today,” said Dr Verghese.
She said there was still stigma and discrimination associated with the disease. Consequently, “most people are also scared to avail health services. This is generally (the case) all over the world and it is very much the same in India”.
The Leprosy Mission does not use the word leper anymore, she said.
“We say that every person has an identity. We say that the person has a name and we do not use the word leper because that discriminates against a person because of the disease.”
But ignorance of the disease was still prevalent, including the belief that it had been eliminated.
“That was the same for me. I’d been in the public health arena for a long time and it was not until nine years ago when I joined The Leprosy Mission that I understood that leprosy was still a problem.”
However, India’s government had been taking steps to solve the problem including awareness campaigns, house-to-house surveys for active case detection, and outreach into remote areas. Treatment is available free of cost and government commitment came “right from the highest levels, from the Prime Minister.”
There were three major planks of the awareness campaign, she said: the fact that leprosy was totally curable; the need to report suspected cases to health care centres; and the importance of not discriminating.
“There are many cases of discrimination … there are many things associated with it: you may lose your job,” said Dr Verghese.
But the awareness campaigns were stressing the fact that affected individuals could still study and get jobs, she said.
“They can be as productive as you and me if they’re given the right environment,” she said. “I think that’s the most important.”
While the Indian Government was committed to combating leprosy, there were still over 100 discriminatory laws related to the disease stemming from the Lepers Act of 1898.
“That was enacted because there was no treatment and they thought that anyone with leprosy had to be segregated.”
There had been 119 discriminatory laws and while the government was committed to repealing them, only 18 had been eliminated, she said.
However some marriage laws had been repealed and those with leprosy were now able to marry. Couples now know that “it’s a totally curable disease,” she said. “There are many good stories where they are married and living happily.”
Some of the worst of the laws still existed “with relation to marriage, with relation to divorce, with relation to studies at college, with relation to travel, with relation to begging … you name it, there are many discriminatory laws …”.
Nevertheless, “most of the central laws have been repealed, the rest of it will be repealed in due course,” she said. “I don’t think it’ll be a decade, I think it’ll be much faster than that.”
Leprosy is currently treated using Multi-Drug Therapy. There is no vaccine against leprosy, although the vaccine used for tuberculosis offers partial protection. However, chemoprophylaxis – medication which offers some immunity – is available, said Dr Verghese.
“If you are detected as a case of leprosy then your contacts are actually surveyed and they’re given a simple dose of chemoprophylaxis.”
Long-term, she said, “we are hoping for a world where there is zero disease, zero transmission, zero disability and zero discrimination”. While there was no target year for all of these goals, The Leprosy Mission Global Fellowship had a goal of zero transmission by 2035.
The Indian Government’s definition of elimination, she said, was less than one case per 100,000. While this ratio had been achieved taking India’s population into account overall, in many regions of the country it had not.
Dr Verghese visited Deep Creek and St Chad’s on 18 and 19 January. She concluded her Australian visit on 10 February.