World Leprosy Day 2019

Message from Dr Poonam Khetrapal Singh, Regional Director, WHO South-East Asia Region on the occasion of World Leprosy Day, 27 January 2019

Ending discrimination, stigma and prejudice is fundamental to ending leprosy. As the theme of this year’s World Leprosy Day highlights, negative leprosy-related attitudes and emotions are major barriers to detecting leprosy early, stopping associated deformities and disabilities and preventing the disease’s spread. They are also major barriers to persons affected by leprosy enjoying the dignity and human rights they are due.

While strong progress has been made in the fight against leprosy worldwide, with just fifteen countries reporting more than 1000 cases in 2017, around 200 000 new cases of leprosy are detected every year. That is 200 000 too many. India accounts for more than half, while significant numbers are detected elsewhere in the WHO South-East Asia Region, Brazil, sub-Saharan Africa and the Pacific.

Though leprosy is often equated with serious deformity and disability, the number of patients that present with these is down to 6%, demonstrating the disease is being diagnosed earlier than ever. More than that, however, it demonstrates that leprosy needn’t cause the disability and deformity that fuels leprosy-related discrimination, stigma and prejudice, and that the disease is 100% treatable and curable when detected early.

To ensure that happens, leprosy affected countries must strengthen and scale up core public health interventions that have proven successful – interventions like active case-finding, the promotion of improved treatment regimens and strengthened surveillance among others. Nevertheless, as outlined in WHO’s Global Leprosy Strategy 2016–2020, policies that promote inclusion and which aim at ending leprosy-related discrimination, stigma and prejudice should be front and center of all leprosy programmes, both as goods in themselves as well as effective tools to achieve a leprosy-free world.

First among them should be empowering people with leprosy to be agents of social change. This could include training them in advocacy and social mobilization to enhance community buy-in and secure high-level support and adequate funding for national leprosy programmes. It could also include helping them form psycho-social support networks to reduce emotional and economic distress, thereby promoting the active participation of leprosy sufferers within society generally. Whatever the case, the voices of persons affected by leprosy must be amplified, with their experiences informing the strategic course of national programmes and the pursuit of leprosy-free status.

Second – and related to this – is the need to promote access to purpose-built social and financial support for persons affected by leprosy. While the inclusion of leprosy affected persons in vocational training or community-based rehabilitation programmes is already underway in most endemic countries, wherever possible, these programmes should be expanded. As part of this, clear information on how these programmes can be accessed should be made available to every eligible person, thereby ensuring no one is left behind.

And finally, the human rights of persons affected by leprosy must be defended and fought for in all aspects of service provision and society more generally. As outlined in Resolution 29/5 of the Human Rights Council, discrimination against persons affected by leprosy must end, including wherever it is codified in national laws. In recent years India, along with other countries in the Region and beyond, has taken significant steps to repeal legislation that discriminates against persons affected by leprosy: In 2016, for example, it repealed the draconian colonial-era Lepers Act, while earlier this month it repealed a law allowing leprosy as legitimate grounds for divorce. Both initiatives are to be commended.

In synergy with the first two pillars of the Global Leprosy Strategy, which focus on core public health interventions, these three initiatives will have direct and wide-ranging impact for persons affected by leprosy and the discrimination, stigma and prejudice they experience. Moreover, they are indispensable to our quest to achieve a leprosy-free Region and world and will accelerate the substantial progress already made to that end.

WHO remains committed to that outcome and to providing normative and material support to Member States as and where needed. On World Leprosy Day, we should all renew our focus on accelerating towards a leprosy-free world and to ensuring this age-old disease is no longer a source of shame and anxiety, stigma and prejudice, but a challenge all of us can unite around to overcome. That opportunity must be grasped, and a leprosy-free world secured for all.

Dr Poonam Khetrapal Singh
Regional Director