Heartfelt thanks to you and Guest Editors Drs. David Parker, Mark Robson, and Brian Bennett for shining a spotlight on an important and easily overlooked infectious disease.1 Hansen's Disease (HD, or leprosy) has challenged humanity for millennia, providing medical riddles that remain unsolved and offering a canvas on which societies have often projected their most hostile fears and aggressive inclinations.
The World Health Organization (WHO), the Nippon Foundation, and the Novartis Foundation for Sustainable Development all deserve considerable credit for their commitments to controlling HD worldwide. Their combined efforts have significantly contributed to the inspiring and overwhelming decline in the worldwide prevalence of a disease whose social side-effects can be considerably worse than its medical ramifications.
We write to highlight underappreciated perspectives and to caution against overreacting to the idea that this disease can now be comfortably disregarded. First, in 1991, the WHO revised down its estimate of the worldwide prevalence of HD from 10–12 million to 5.5 million.2 Five causes were listed for this revision:
- The large number of patients cured through multidrug therapy (MDT);
- Elimination from existing registers of those individuals who do not qualify as “cases,” as defined by the WHO Expert Committee on Leprosy in its sixth report3 recommending that for the purpose of prevalence, only a patient requiring or receiving chemotherapy should be recognized as “a case of leprosy”;
- Possible late effects of intensive dapsone-based control activities in some areas;
- Strengthening of leprosy control activities in many countries while introducing MDT; and
- Naturally declining trends as observed in some parts of Africa.
While it is impractical to estimate the relative impact of these factors, it should not be overlooked that one factor in the apparent decline was an administrative one: changing the definition of a “case” to include only people “requiring or receiving chemotherapy.” Second, the revised estimates—made in part to assist the development of control strategies—consciously discounted two to three million individuals “who no longer require chemotherapy but who have been left with residual deformities and who may require medical treatment and care.”4 One alarming fact that the declining prevalence masks is the knowledge that the disease incidence—the number of new cases arising in a specific time period, a statistic tightly related to the spread of the disease—has remained essentially unchanged for decades.
To truly control HD, efforts must continue so that we can identify and treat new cases with MDT. Equally important, however, are efforts to decrease the incidence of HD with approaches such as vaccination. Efforts to de-stigmatize HD are equally important because the overwhelming stigma currently associated with HD in many parts of the world seriously hinders people from seeking out and sustaining adequate treatment. One danger in getting prematurely excited about the decline in HD prevalence is the natural tendency to remove what little financial support currently exists for these critical, necessary pathways to the permanent control of this ancient disease.
Toward this end, we particularly fear that the photo essay5 may have served to reinforce rather than reduce the stigma associated with HD. The subjects were viewed clinically through the lens of their disease rather than as fellow human beings deserving of dignity and respect. The images unwittingly evoked age-old stereotypes of sad and helpless victims rather than portraying people struggling with HD as the vibrant, dynamic individuals they are. Examples of images that serve instead to dignify and inspire can be found in the book, Quest for Dignity: Personal Victories Over Leprosy/Hansen's Disease.6