In countries where leprosy has been “eliminated as a public health problem,” governments tend to shift their priorities elsewhere. The challenge is to keep governments engaged so that detection and treatment of new cases continue and people have access to leprosy services. The WHO Goodwill Ambassador for Leprosy Elimination (GWA) Yohei Sasakawa has been putting effort into reminding leaders in each country that control measures continue to be necessary.
Since the adoption of multidrug therapy (MDT) as the global standard for leprosy treatment, around 20 million people have been cured. In spite of the success of MDT, however, for the past decade the annual number of new cases reported globally has plateaued at around 200,000. Reducing the number of new cases requires both more effective implementation of known interventions—such as case detection, contact tracing, and post-exposure prophylaxis (PEP) with rifampicin—and continued scientific research to fill in gaps in knowledge, improve diagnostic methods, and find new ways to break transmission.
In 2018, Sasakawa Health Foundation (SHF) became a founding member of the Global Partnership for Zero Leprosy (GPZL). GPZL aims to facilitate alignment among its member organizations and individuals so that progress toward the goal of zero leprosy can be accelerated. The kind of coordinated action that GPZL can make possible is what is needed to eliminate transmission and achieve a leprosy-free world.
Leprosy has been curable for decades, but prejudice and discrimination against persons associated with the disease persist. Obstacles to education and employment exist for current patients, fully recovered persons, and their family members. Prejudice and discrimination cause fear of stigma and can lead people to hide their condition. This hinders efforts in endemic countries to provide early detection and treatment.
“Nothing about us without us” has been a slogan among disability rights activists since the 1980s. Persons affected by leprosy can speak powerfully about their experiences in ways that are not possible for anyone else. Fostering an activist consciousness among persons affected by Hansen’s disease is an essential part of the journey to a leprosy-free world.
As leprosy and its associated problems become matters of the past, the world is losing evidence of the highs and lows of how humans responded to the disease. Encounters with the stories of individuals and the places that they lived provide opportunities for reflection and formulation of ideas and hopes for the future.
In order to advance history preservation on a global scale, cooperation must happen among three groups: governments, experts, and individuals with direct experience of a location—including persons affected by leprosy and others who lived alongside them such as medical practitioners. Government involvement ensures sustainability; experts know the best techniques for particular needs; and individuals with direct experience of the location provide invaluable perspectives that inform how the history is presented.
Around the world, the number of people taking action for history preservation is very small. They are often fighting lonely battles against development projects that would demolish buildings and destroy landscapes and artifacts. If they can be supported to form networks with other history preservation activists, then they are more likely to understand their work in a global context and to persevere in their efforts.