Pulse: FollowUp: “We Are Not Afraid to Say ‘Leprosy’”

In his Easier Said Than Done column in April, Jeff Brooks recalled his experience working with a leprosy charity that didn’t want to talk about leprosy. He pointedly said, “How many people have leprosy right now because we couldn’t bring ourselves to say ‘leprosy’?”

The charity Mr. Brooks wrote about was American Leprosy Missions. While I don’t dispute his account of our past, there’s more to the story, and I’d like to set the record straight.

In short, we are not afraid to say “leprosy” — and we are making more progress against the disease than ever.

American Leprosy Missions did, indeed, go through a time when we avoided using the word “leprosy.” We shied away from graphic descriptions of the effects of the disease. We even went so far as to stop calling ourselves American Leprosy Missions, instead going by “ALM.” We also redefined our mission as not just fighting leprosy, but helping people with all types of disabilities.

The organization had lost focus. Everyone — from the board to the staff — was confused. Sadly, our internal confusion reached our donors. They couldn’t tell what we were about.

The less we talked to donors about their part in the fight against leprosy, the less they gave. Donation revenue plummeted by 61 percent. Our effectiveness at getting new donors dropped dramatically.

Worse yet, our most loyal donors were leaving us at an alarming rate — our file shrank by a third. It would hardly be an overstatement to say ALM was in a death spiral.

The road back
That was the situation when I joined the American Leprosy Missions in 1994. I lifted the ban on the word “leprosy” and brought back our name — American Leprosy Missions. We began again to tell the story of leprosy and the horrors it visits on those who have it.