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.

We also made two other important changes: We refocused our mission squarely on curing leprosy, treating its effects and rehabilitating those who have had it. Then we rebuilt our struggling fundraising program, hiring The Domain Group (now Merkle) to help put it back on solid strategic footing.

I’m happy to report that all of that worked. We turned the corner. It took a while, but our donor file started growing again, and we’ve experienced growth in donation revenue ever since our turnaround in 1995. Most important of all, more people around the world are being cured of leprosy than ever before.

Lessons learned
There are two lessons in all this: First, a charity can come back from the brink. It wasn’t easy or fast, but we did it. In these hard times, I know there are others that are where we were in 1994. You can survive if you have the will to make the needed changes. Second, words matter. If the thing you’re fighting is terrible, you’re going to have to talk about terrible things.

I don’t want to give anyone the impression that I or anyone else at American Leprosy Missions relishes talking about leprosy. I think every decent person rightly feels uncomfortable with something as awful as leprosy.

I hate leprosy. I pray for the day when it is wiped off the face of the earth. I wish I never again had to say that ugly word. I’d be much happier never to see the terrible images of people suffering from the disease. But I think most people will agree that a world where there’s no leprosy would be far better than a world where we politely never mention leprosy — but it goes on ravaging lives.

We aren’t going to ignore leprosy out of existence. The only way we’re going to beat leprosy is to fight it on the front lines, one patient at a time. And that’s going to cost money — money that comes from donors who are moved to act by seeing what a vile enemy leprosy is to mankind.

I can’t help but mention that it costs only $300 (that’s $25 a month for a year) to find and cure someone with leprosy. I hope people reading this will consider stopping by our Web site at leprosy.org and giving something; that is surely one of the great “bargains” of philanthropy today!

— Christopher J. Doyle
president and CEO,
American Leprosy Missions

American Leprosy Missions, founded in 1906 and based in Greenville, S.C., is the oldest and largest Christian organization in the United States devoted to restoring the lives of people affected by leprosy and related conditions worldwide through holistic cure and care.