– Dr Khetrapal Singh –
Dr Poonam Khetrapal Singh, WHO Regional Director for South-East Asia
On World Leprosy Day, WHO is calling on countries in the South-East Asia Region and across the world to be “United for Dignity” in their quest to achieve zero leprosy infection and disease, zero leprosy-related disability, and zero stigma and discrimination. In 2020 more than 127 000 new leprosy cases were reported globally, of which 95% were reported from 23 priority countries. Around 7% of cases were in children and 6% were cases of delayed diagnosis with visible deformities – or grade-2 disabilities (G2D) – at the time of diagnosis. Stigma and discrimination play a critical role in delaying diagnosis and treatment, increasing G2D, sustaining transmission, and negatively impacting the psycho-social well-being of affected persons and their families. Globally, up to 50% of persons affected by leprosy face psychiatric morbidities such as depression, anxiety disorders and suicide attempts, highlighting the need to accelerate access to mental health services, including psychological first aid.
In 2020, 57 countries reported instances of discrimination due to leprosy and four countries reported more than one case of discrimination. At least 115 discriminatory laws are reported to be in place in seven countries. Laws and regulations that facilitate or allow discrimination against persons affected by leprosy must be repealed or amended without delay. The new WHO Global Leprosy Strategy 2021–2030 urges all countries not only to adopt the UN Principles and Guidelines for elimination of discrimination against persons affected by leprosy but also to implement positive initiatives that facilitate inclusion. Such initiatives could include increasing data collection on social exclusion and monitoring the impact of stigma reduction strategies, including for other neglected tropical diseases. Specific attention should be given to vulnerable populations, including women, children, immigrants, refugees, the elderly, the homeless, residents of deprived leprosy “colonies” and those living in geographically inaccessible areas.
It is the duty of all stakeholders to respect, protect and fulfil the right of persons who have experienced leprosy to a dignified life free from disease-related stigma. Persons affected by leprosy should be encouraged and supported to form self-help groups, ideally with other persons with disabilities or facing social exclusion. Initiatives should be taken to nurture, support and strengthen the capacity of regional and national community-based organizations and networks, enabling persons affected by leprosy to engage and influence decision-makers at all levels. Community-based rehabilitation services that strengthen livelihoods and optimize inclusion should be expanded, and access to social entitlements and other welfare measures ensured. Corporate bodies should encourage employment opportunities for persons affected by leprosy.
Enhancing early case-finding by tackling stigma and discrimination is especially important given the impact of the COVID-19 pandemic, which in 2020 resulted in a 37% reduction in new cases reported globally. Amid ongoing waves of COVID-19 infection, leprosy programmes must continue to roll-out innovative approaches to reach the unreached and underserved, including community-based initiatives for active case detection and prevention through a single dose of rifampicin, online training of health workers – especially at the primary level – and increased use of digital health technologies. Supply chains for multi-drug therapy (MDT) must at all costs be maintained and access to MDT ensured. Antimicrobial resistance must continue to be monitored in drugs used to prevent and treat leprosy, particularly in patients with resistance to rifampicin.
Leprosy must not be forgotten. Over the past decade, countries in the South-East Asia Region and across the world have made tremendous progress in reducing the leprosy burden, enabling WHO and leprosy stakeholders to aim to achieve zero new autochthonous cases in the world’s 120 leprosy-affected countries by 2030. To do that, increased global and national investment is needed in programmatic activities and research, with a focus on new approaches to active case detection, innovative tools for geospatial surveillance and mapping, and high-impact preventive approaches, including new chemotherapy regimens and vaccines. Operational research on community-based rehabilitation and stigma reduction must continue to be strengthened. On World Leprosy Day, WHO stands United for Dignity in our quest to achieve zero leprosy infection and disease, zero leprosy-related disability, and zero stigma and discrimination.
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