It was in India in 2004 that I first used the expression, “You are the main actors.” I was talking with people affected by leprosy, and voicing my belief that they themselves have a vital role to play in eliminating leprosy and its accompanying stigma. After long years engaged in the fight against the disease on both the medical and social fronts, I am convinced of this.

At different meetings and press conferences, and also at the UN Human Rights Council, I make a point of inviting people affected by leprosy to come to the fore where they can be seen, heard and acknowledged. In India, I assisted with the formation of the National Forum, the increasingly influential network of people affected by leprosy. Recently, in that country, in Bihar State, representatives of Bihar Kushth Kalyan Mahasangh, a leprosy welfare society, sat directly opposite the state health minister to discuss housing, land ownership, pensions and other pressing issues. As a result, the state authorities are now in the process of reviewing their policies.

I was delighted when the WHO organized a meeting in Manila recently to draw up guidelines for strengthening the participation of people affected by leprosy in leprosy services. The WHO is at last recognizing what people affected can contribute to national programs. No longer being cast exclusively in the role of recipients of services, they are being invited to speak out and work alongside other stakeholders. This is an epoch-making development. It is a path to restoring dignity.

Among people affected by leprosy there will be those who hold back because of their lack of experience. I say to them: “Fear not. You have enormous potential and ability. Embrace the WHO’s shift in thinking. Your input as the primary stakeholders in leprosy will go a long way toward eliminating the disease and bringing an end to stigma and discrimination as we strive for our goal of a leprosy-free world.”

Yohei Sasakawa, WHO Goodwill Ambassador

No.45PDF

MESSAGE: Primary Stakeholders

MANILA REPORT: From ‘Clients’ to ‘Partners’

INTERVIEW: Don’t Forget Us

COLUMN: Questionable Questions

HUMAN STORY: Man with a Message

AMBASSADOR’S JOURNAL: African Sojourn

NEWS: Japan’s Leprosy Literature

FROM THE EDITORS: TERMINOLOGY