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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

MANILA REPORT: From 'Clients' to 'Partners'

A new era of involvement beckons for people affected by leprosy in leprosy services.

Delegates are all smiles at the end of the Manila meeting.
Delegates are all smiles at the end of the Manila meeting.
"Unique and important," "a milestone," "historic" were just some of the descriptions applied to a two-day meeting on June 9-10 to develop guidelines to strengthen the participation of people affected by leprosy in leprosy services.Hosted by the WHO at its Western Pacific Regional Office in Manila, the meeting reviewed draft guidelines prepared by a WHO-appointed task force on identifying ways that people affected by leprosy can be involved as partners in leprosy services: not merely as patients. Some 50 national program managers, representatives of people affected by leprosy and other experts took part in the discussions, which took their cue from the WHO's Enhanced Global Strategy for Further Reducing the Disease Burden Due to Leprosy (2011-2015). In that document, for the first time, people affected by leprosy were acknowledged to have a major role to play in leprosy services, "especially in the area of advocacy, awareness and rehabilitation."How to realize this was the task undertaken in Manila. Chair Jose Ramirez, Jr. (USA Coordinator for IDEA) commented, "The end result of our deliberations will result in more inclusive practices."

Areas of Partnership

Using the Enhanced Global Strategy as a framework, the draft guidelines indicated 14 areas of potential partnership, including planning and management of services, training and capacity building, stigma and discrimination, prevention of disability, and research. Task force member Dr. Wim van Brakel (Royal Tropical Institute) talked the meeting through some of these. "We need to make an inventory of where we are now. It is not as if we are starting from zero," he said. Subsequent presentations showed that the involvement of persons affected by leprosy in leprosy services is already happening at various levels. Speakers including Sophea Leng of Cambodia and Maria Graciela Baez of Paraguay spoke of their experiences working, respectively, in rehabilitation and counseling. Baez, who herself received psychological help from another person affected by leprosy, said, "People affected by leprosy can be good counselors because they have important experience and can help others to recover their dignity, security and self-belief."

Challenges

With the draft guidelines being the work of several different contributors, there was a consensus on the need to simplify objectives, be consistent in the language used and ensure that guidelines would be of assistance to the people they were intended to serve ・namely, national program managers ・who needed to be persuaded that participation by people affected can benefit their work. One program manager who sounded a positive note was Dr. Alcino Ndeve (Mozambique). He said that he had a health minister who was committed to leprosy and who chaired an annual meeting of leprosy stakeholders. Mozambique was putting in place the "humanization of health care" and he would be incorporating the points raised into his country's national program. "They cannot be treated as projects, they must be part of the program," he said.Representing a group of people affected by leprosy from Mali, Coulibaly Oumar (AMHL) addressed the national program managers in the room when he said, "This is a complex, diverse topic. It is not easy to find a common formula that may be applied to all the countries in all the contexts. I think all program managers should be creative, given the context and the realities you are facing."

Concerning resource mobilization, Dr. Joseph S. Kawuma (GLRA) saw a role for people affected by leprosy, especially in the context of leprosy control programs that are facing situations of diminishing resources. "I am asking to hear in clear terms whether organizations of people affected by leprosy indeed have a clear role to play in mobilizing resources ・financial and human ・to supplement the more or less desperate situation for leprosy control in some settings."

'A KIND OF EMPOWERMENT'

In his closing remarks, Dr P.K. Gopal (IDEA India), a member of the task force, spoke of his satisfaction that such a meeting had taken place. "This is a historic event・ kind of empowerment, enabling people to work with the government. This is a beginning."How the guidelines are accepted by governments will be the test of their effectiveness. The task force is now working on revising them, with a view to issuing them early next year.