From Dr Poonam Khetrapal Singh, Regional Director, WHO South-East Asia Region
The world is making steady progress in the quest to become leprosy-free. Between 2016 and 2018 the number of new leprosy cases reported globally declined by more than 6000. India – the world’s most affected country – reduced the number of new cases reported by more than 15 000. The number of visible deformities at the time of leprosy diagnosis is now at 1.5 per million people, making the 2020 target of less than one per million people within reach. Member States are making concerted efforts to reduce leprosy-related stigma and discrimination, with India scrapping several discriminatory laws and Nepal looking to do the same. The lives of people affected by leprosy are improving. Barriers to tackling the disease are being overcome.
Further progress is needed to achieve the Global Leprosy Strategy’s targets of zero disabilities among new pediatric patients and a grade-2 disability rate of less than one case per million people. As the theme of this year’s World Leprosy Day emphasizes, ending leprosy-related stigma and discrimination will enhance early case detection and help us achieve a leprosy-free world. The evidence is clear. Stigma creates fear. Fear inhibits health-seeking. Delayed health-seeking causes late diagnosis. Late diagnosis can cause deformity and disability.
It is not only a question of health: It is also about rights. Across the world, people with leprosy are frequently barred from accessing public amenities, are not allowed to work, are divorced on account of the disease or stopped from travelling. Often these restrictions function at a social level. But they can also be sanctioned by outdated laws that no longer reflect a country’s social and political values, or its commitment to leaving no one behind. Our quest to advance the health and well-being of all people must be rights-based and people-focused. The human rights of persons affected by leprosy must be respected, protected and fulfilled.
To remove stigma and discrimination against persons affected by leprosy, and accelerate towards a leprosy-free future, Member States in the WHO South-East Asia Region and beyond can take advantage of several opportunities. Each one of them is reflected in a 2010 UN Resolution on eliminating leprosy-related discrimination, and in the Global Leprosy Strategy’s core pillars and targets.
First, persons affected by leprosy should be empowered to combat associated stigma. Social awareness campaigns that are led by persons affected by leprosy can dispel misinformation and the stigma that it promotes. High-level advocacy campaigns can secure political commitment and the funds needed to accelerate change. Religious and community leaders should be taken on board and provided guidance on how to inform and persuade people to join the fight against leprosy-related stigma. Accurate information is one of the most powerful tools we have.
Second, all discriminatory laws should be repealed. As the UN Human Rights Council continues to emphasize, statutes that discriminate against persons with leprosy are an affront to our common dignity and humanity. They have no place in today’s world. At present, 21 countries globally have discriminatory laws on the books, including five countries in the South-East Asia Region. The repeal in recent years of several discriminatory laws is to be welcomed. The Region’s progress must continue until all countries are free of discriminatory laws.
Third, all persons affected by leprosy should have access to social and financial support and rehabilitative services. Vocational training and community-based programmes are crucial to ensuring persons who have been deformed or disabled by leprosy can be productive members of society. To their credit, almost all leprosy-endemic countries have developed and are implementing programmes aimed at supporting the social and economic autonomy of persons affected by leprosy. It is essential that persons in affected communities are made aware of such services and know how to access them.
On World Leprosy Day, WHO reiterates its commitment to accelerating efforts to achieve a leprosy-free world. The South-East Asia Region has made commendable progress to detect and treat leprosy cases early and to end leprosy-related stigma and discrimination. Though both the Region and the world have officially eliminated leprosy as a public health problem, we must now go the extra mile and reach sub-national elimination in all affected areas. The targets of the Global Leprosy Strategy can be achieved. A leprosy-free world with zero disease, zero transmission, zero disability and zero stigma and discrimination is possible.
From Yohei Sasakawa, WHO Goodwill Ambassador for Leprosy Elimination
On the occasion of World Leprosy Day 26 January 2020, I think of the harsh life that persons affected by leprosy have had to endure—abandoned by their families, isolated from society and deprived of their freedom.
Today, through the efforts of many people, leprosy is an easily curable disease. The drugs are distributed free of charge. Early detection and treatment help prevent disability.
But despite the progress of science and the fact that leprosy can be treated with drugs, just like other diseases, there are still people suffering from the unwarranted discrimination that exists toward leprosy.
Because of leprosy, there are people who have been separated from their families; who have been unable to continue at school; who have lost their jobs; and who have missed out on the chance of marriage. After they have been cured, they are labeled ‘ex-patients’
and continue to face discrimination.
We have not only to fight the disease, but also the prejudice and discrimination that have infected society.
New cases of leprosy are still being discovered in many countries and regions. But fearful of being diagnosed, people often do not go to a clinic or hospital because they think of leprosy as a shameful disease. This is one of the biggest obstacles to
early diagnosis and treatment.
In order for leprosy patients to feel they can go to hospitals and clinics to receive treatment, just as they used to before they contracted leprosy, and for them to be able to lead full lives in society, all of us need to have a correct understanding of leprosy and compassion toward those with the disease.
This year, organizations representing persons affected by leprosy, which is also known as Hansen’s disease, are issuing messages on World Leprosy Day. I hope you will listen.Leprosy is not a disease of the past. It is an ongoing issue. On this World Leprosy Day, I would like to join together with as many people as possible in thinking what we can do to make a difference to the lives of persons affected by leprosy.
Let’s make today a new beginning. Let’s do our best together.