Going Social: How targeting stigma and discrimination can accelerate progress towards a leprosy-free world

Gyanu Paudel knows first-hand the sting of leprosy-related stigma.

When Gyanu was just eight years old she developed white patches on her arms. As the bacteria that cause leprosy took hold, mild deformities in her hands and feet began to appear. Ashamed and fearful, Gyanu’s parents hid her in a room. Years went by.

Though Gyanu later accessed treatment, it never cured the problem completely. This is because Gyanu, who is now 74, was treated in the late 1950s, when leprosy treatment was rudimentary.

But even if Gyanu’s story were played out today, where multidrug therapy (MDT) can fully cure leprosy, the result would be similar. This is because avoiding the disease’s lasting damage, including disabilities, requires early detection. And early detection requires a society-wide willingness to deal with the disease in an open, honest and taboo-free way.

Dr Poonam Khetrapal Singh, Regional Director of WHO South-East Asia, where the Global Leprosy Programme is based, says efforts to root-out stigma and discrimination are vital to achieving the goal of zero leprosy transmission and zero leprosy-related disabilities, especially among children.

“Leprosy-related stigma is a crucial barrier to ending the disease once and for all. Despite the highly effective medicines at our disposal, leprosy continues to be transmitted and irreversible leprosy-related disabilities continue to occur,” she says. “By targeting the disease’s social components we can make further progress in key communities and accelerate towards a leprosy-free world.”

While leprosy’s prevalence has reduced 99% since MDT was introduced in the 1980s, in 2015 almost 212 000 leprosy cases were reported worldwide, of which 8.9% were found in children. 6.7% of the total number of cases already exhibited grade-two disabilities such as visual impairment, muscle atrophy or clawing.

Though the 22 countries that account for 96% of reported cases have large leprosy-free areas, the affliction continues to circulate among vulnerable communities. In the South-East Asia Region, six countries still report more than 1000 new cases annually. Leprosy has been eliminated as a public health problem at the global and regional levels, and in all but a few countries.

According to Dr Erwin Cooreman, Team Leader of the Global Leprosy Programme, combatting stigma will achieve two outcomes.

“An end to stigma means an end to transmission. Fear of diagnosis and stigma causes families to avoid the problem and its effective treatment. This leads to continued infection among close contacts and the disease’s ongoing transmission. An end to stigma also means an end to leprosy-related disabilities. Stigma creates a disincentive to seek diagnosis and treatment, making early detection difficult and leading to deformities and disabilities,” he says.

Regional Director Dr Khetrapal Singh, who has made the battle against leprosy and other neglected tropical diseases a flagship priority in the Region, says there are three high-impact interventions that health authorities and other sectors can make to address stigma and discrimination effectively.

The first is reaching out to and including leprosy-affected persons and communities in their programming. This makes for more responsive policy, and also advances the interests and visibility of leprosy-affected persons in the public domain.

The second is repealing laws or regulations that sanction or abet discrimination against persons suffering leprosy. Regressive legislation that discriminates against persons with leprosy continues to exist in several countries, inhibiting a range of basic rights.

And the third is mobilizing a concert of voices to counter harmful social attitudes. Nongovernmental and civil society organizations should be included in campaigns to challenge leprosy-related stigma, and to ensure that discrimination against affected persons and their family members is eliminated.

For persons like Gyanu, and for the future of leprosy control, an end to stigma and discrimination is the remedy most urgently needed.

“Despite science having found solutions to leprosy, our social, political and economic structures have created barriers. By dismantling these barriers and ending stigma and discrimination, we can accelerate towards zero leprosy transmission and zero leprosy-related disabilities,” Dr Khetrapal Singh says, adding, “It is imperative that no one is left behind.”