World Leprosy Day is celebrated on the last Sunday of January. The next one will be on January 26th, 2020 and aims to raise awareness about a disease that many people believe is extinct. Today not only the disease is overlooked, but also those affected by it.
To address this situation, the World Health Organization (WHO) created the Global Strategy for Leprosy 2016-2020, called “Accelerating towards a leprosy-free world”. The strategy is based on three main pillars: (i) strengthening ownership and government associations; (ii) stopping leprosy and its complications; and (iii) ending discrimination and promoting inclusion. Its objective is to further reduce the burden of global and local leprosy, to reach the mark of zero children with leprosy-related disabilities, and a reduction of new patients diagnosed with deformities related to leprosy to less than one per million inhabitants, and to repeal every law that enables discrimination against leprosy patients. The strategy was supported by the WHO Technical Advisory Group on leprosy.
Every day, almost 600 new people are diagnosed with and begin treatment for leprosy. In 2018-2019, 283.000 people were diagnosed and treated through the WHO campaign, and more than 1.4 million were reached through health education campaigns and awareness events about this disease. It is estimated that millions more have yet to be diagnosed. The majority of cases, 81%, occur in three countries: India, Brazil and Indonesia.
Leprosy is an infectious disease of the skin and nerves caused by a bacillus, Mycobacterium leprae. Its multiplication is slow, and the incubation period can reach 5 years. The disease is completely curable, the treatment is effective and, if followed correctly, consists of a combination of antibiotics that, since 2000, have been offered free of charge through the WHO, Novartis and the Novartis Foundation. However, if not diagnosed and treated quickly, it can cause debilitating deficiencies. The effects of leprosy are exacerbated primarily by the negative stigma surrounding the disease.
In order to strengthen the commitment to control leprosy, promote correct diagnosis and treatment, disseminate information and reduce prejudice, BIREME/PAHO/WHO, in collaboration with the Regional Leprosy Program, developed the Global Strategy Window of Knowledge in Leprosy 2016–2020. It is a source of information whose first version was launched in January 2019 in celebration of World Leprosy Day, which was instituted by the United Nations (UN), and has been updated with new content and resources for health professionals and the general public: related events, publications, access to the telemedicine platform and an interactive and collaborative communication platform about the disease, Second Formative Opinion – SOF, and bulletins on the subject. The purpose of the Window is to organize and facilitate access to scientific and technical evidence and information on the subject.
Given the relevance of the issue, BIREME and the Instituto Lauro Souza de Lima (ILSL) carried out actions to strengthen the Leprosy VHL, including the reactivation of its Advisory Committee to delineate actions for the regular maintenance of the VHL, and to update the portal and its technologies.
The portal redesign began in 2019, conducted by the BIREME team with the participation and validation of the ILSL team, when a user study was conducted to identify information needs, having also been discussed with the advisory committee strategic actions for the sustainability of the VHL.
The launch of the new portal took place on January 31st 2020, the date of the National Day to Fight and Prevent Leprosy, and offers a more modern, clean and dynamic design that seeks to highlight the full text content and information sources focused on leprosy, topics with documents preselected by search strategies, highlighting the Window of Knowledge about leprosy, and a new section aimed at offering information to ordinary citizens/the general public, whose objective is to offer information in a simple language to expand and disseminate knowledge on the subject, thus helping to reduce prejudice and discrimination against the disease, as well as related news and highlights.
Links of interest
NLR – No Leprosy Remains
Leprosy Virtual Health Library Brazil (in Portuguese)