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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

FROM THE EDITORS: TERMINOLOGY

Many would doubtless agree that "a person affected by leprosy" is an unwieldy term; however, it does not carry the stigma of the "L" word. Yet when it is shortened to PAL, or even LAP (a "leprosy-affected person"), the descent into acronyms is a slippery slope to more labeling.

At a recent meeting in Manila, Dr. Vijaykumar Pannikar, the former team leader of the WHO's global leprosy program, argued that we are all persons affected by leprosy. He made the comment in an exchange with Coulibaly Oumar, a delegate from Mali, who had been talking about "my people". Dr. Pannikar argued that anyone who has an interest in seeing an end to leprosy and its related discrimination is a person affected by leprosy.

Recently, the expression "primary stakeholder in leprosy" has been gaining currency. In draft guidelines for the participation of persons affected by leprosy in leprosy services, the term was defined as "the persons, families and communities affected by leprosy." It is not necessary to rigidly identify those who are medically affected and those who are not, the definition went on. "The persons and groups, who have experienced certain consequences of the disease, whether it is physical, social or psychological, are the primary stakeholders."

"Primary stakeholder in leprosy" may be no shorter than "a person affected by leprosy," but arguably it represents a shift from a passive to an active mindset. Primary stakeholders have a "stake" in wanting an end to leprosy and leprosy-related discrimination. They are now being actively courted to contribute their expertise to make that a reality.