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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

OPINION: Realize the Potential of the People

If we want sustainable leprosy services, there’s a solution staring us in the face.

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People affected by leprosy are well placed to recognize the disease in others and the need for prompt treatment.

Some years ago I remember Mr. Sasakawa saying that leprosy is different from other diseases because health workers have to go out and search for patients. He was thinking of the stigma attached to leprosy that makes it difficult for those who suspect they have the disease to come forward for treatment.

We need to keep this in mind today as partners gear up their efforts — perhaps for the last time — to seek a leprosy-free world, following commitments made at last July’s International Leprosy Summit in Bangkok.

Over the years I have met many people and families impacted by this disease. Some have succumbed to their fate and its socio-economic consequences, but others have resisted. I have watched the growing activism of people affected by leprosy. I have also noted how, once “awakened”, they pay close attention to the wellbeing of their family members as well as their own physical care.

Showing me her fingers, Mrs. Hla hla of Myanmar once told me:“I suffered a lot because of these. I don’t want my daughter or other young people to end up like me. That’s why I am not afraid to speak openly and say, ‘Leprosy is curable. Seek treatment without delay.’”

In Tampoi settlement, southern Malaysia, I met a father of two who made a living helping an elderly lady left severely disabled by leprosy. His hands and feet bore witness to his own struggle with the disease. When his daughter was one year old, he had noticed a white spot on her hand. Suspecting leprosy, he took her to a clinic, but it was a false alarm. Several years later, he saw another patch on her body: this time there was no mistake. His daughter was put on treatment but continued going to school as usual.

A Way Forward

I wonder if we have sufficiently appreciated the fact that people affected by leprosy do not want others to undergo the sufferings they themselves have experienced. If we are to reduce the burden of leprosy further, then we must take advantage of this sentiment and encourage it. Individuals and families affected by leprosy need to be invited to take ownership of the diagnosis and the treatment, since they are the ones who benefit most.

Recalling Mr. Sasakawa’s comment, it is not feasible today to expect that governments will be able to send out health workers indefinitely to search for every new case. I believe it is those with personal experience of leprosy, their families, and the groups they form, who could play this role.

We can’t expect governments to send health workers looking for every new case indefinitely.

Since the 1980s, some 16 million people have been treated with multidrug therapy. If we include their family members, we are talking of tens of millions of people who have been impacted by leprosy. Empowering just 1 percent of them to look out for their families and neighbors would boost our capabilities tremendously.

Of course, empowerment derives from diverse factors, including the existence of local support groups and associations, and individual attainment of social and economic status. But it also comes from raising people’s “leprosy literacy” through various tools, measures and opportunities.

To encourage the greater involvement of people affected by leprosy, Sasakawa Memorial Health Foundation, in collaboration with the International Federation of Anti-Leprosy Associations’ Temporary Expert Group, plans to compile successful examples showing how strengthening participation of persons affected by leprosy and their families, or SPP, can have a positive effect on various aspects of leprosy services.

I am not opposed to the idea of having health workers examine household contacts of confirmed cases, nor do I dispute the possibility that preventive treatments may have a positive — if not lifelong — effect. I believe, however, that what is more sustainable over the long-term is empowering families and local communities to recognize the disease and act on that knowledge.

Leprosy has shown it cannot be wiped out in a single campaign. The key to fighting the disease is sustainability of quality leprosy services.

Let us believe in the great potential of the people and groups impacted by leprosy. They should be thought of as a wonderful asset. Surely they underpin the solution to achieving a world free from leprosy and its consequences.

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AUTHOR: Kay Yamaguchi

Kay Yamaguchi is an advisor of Sasakawa Memorial Health Foundation.