Although the world has come a long way towards the elimination of leprosy, we have not reached our goals due to a whirlpool of negligence and poor political and social commitment. In many countries, leprosy continues to be a complex medical and social problem that adversely affects the lives of individuals and the community at large. As reported in the Weekly Epidemiological Record,in 2023 there were 182,815 new leprosy cases detected globally, of which 10,322 were new child cases. When considering case numbers on the African continent, we must add data from seven countries in the Eastern Mediterranean Region (EMR) – Djibouti, Egypt, Libya, Morocco, Tunisia, Somalia, and Sudan – to the African Region (AFR) totals, yielding 23,404 new cases, of which 1,731 are child cases and 3,183 involve grade 2 disabilities (visible deformities). These numbers are not just about instances of disease; they often also indicate that affected individuals are not enjoying their universal human rights and that they and their communities are grappling with various psychosocial problems.

Leprosy is already a bio-psychosocial problem in most instances, and late treatment makes the problem worse. When the disease is allowed to progress, disabilities develop and individuals often experience a crisis of dignity. In the African countries that I visited recently – Kenya, Nigeria, Ghana, Senegal, Sierra Leone, and Mozambique – I saw the depth of the problem and the consequences of neglect. In some countries, regrettably, tribal and political conflict diverts government attention, increasing insecurity and risk of death for already vulnerable people. Armed attacks in Arsi Zone, Oromia Region, Ethiopia have been killing residents of Tesfa Hiwot and Addis Hiwot leprosy settlements since October 2022. The situation is especially dire for those who are too old or disabled to defend themselves. Conflict also disrupts the efforts of people’s organizations. During my visit to Mozambique, I heard from representatives of ALEMO that the organization has lost regular contact with 18 groups that had more than 650 members because of insurgency in the north corner of the country. 

Addressing the disease alone is clearly not enough. Governments, non-governmental organizations (NGOs), corporations, academic institutions, and other entities must all contribute their efforts to address leprosy as a multi-dimensional problem. 

In closing, I would like to take this opportunity to note that in many of the African countries I visited, including Ethiopia, grassroots reports are unlikely to be providing reliable numbers. The various causes of the inaccuracies include reputational concerns as well as misguided efforts to provide a full report despite insufficient data management systems. I therefore implore all actors to look behind the numbers in reports while pursuing the Global Leprosy Strategy’s zero leprosy vision and to consider the human rights and psychosocial issues that are at stake. Based on what I have learned from my experiences in Ethiopia and my visits to six other African countries, people’s organizations can become effective advocates for the rights of persons affected by leprosy and their family members if they are supported to grow into visible, self-reliant organizations. I would like the strengthening of these organizations to be seen as a necessary part of the zero leprosy strategy.