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WHO Goodwill Ambassador's Newsletter For The Elimination Of Leprosy

REPORT: Let's Hear It for CLAP

A multi-sectoral national coalition on leprosy takes shape in the Philippines.

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Participants in the 1st National Workshop of Organizations of People Affected by Leprosy, held in Manila in March.

Any attempt to control or eliminate leprosy has to go beyond killing the bacteria, since leprosy is far more than a medical condition or public health concern. The effects of stigma and discrimination associated with the disease are often worse than the disease itself, extending to other members of the family.

Since leprosy is made more complex by its social dimensions, it is important to take into consideration the perspectives of those affected by it. They must be an important part of all the processes that concern them, and their right to chart their own future must be respected. Proceeding on this basis will pave the way toward a more comprehensive, sustainable and holistic approach to improving the quality of life of people affected by leprosy.

EXISTING NETWORKS

In the Philippines there are many formal and informal groups and networks of people affected by leprosy, distributed throughout the country's eight leprosy sanitariums. Many have been around for years and have been increasingly recognized and supported by the government, NGOs and religious groups.

However, there has not been sufficient discussion among them about how they should work with the government's leprosy control program and other departments, whether they should have a shared vision, and how they might establish and strengthen partnerships with other groups, such as people with disabilities, to bring about positive change for people affected by leprosy at every level.

To help chart a course for the future, a three-day national coalition-building workshop was held from March 7 to 9 in Manila.* The meeting brought together different stakeholders in leprosy in the Philippines, including government agencies and NGOs, as well as leaders of almost 20 people's organizations.

It resulted in the formation of the Coalition of Leprosy Associations in the Philippines, or CLAP, made up of organizations that believe in the same vision and share the same objective of improving the quality of life of people affected by leprosy and their families.

The coalition will provide different people's organizations with a platform for advocacy and lobbying on issues such as economic deprivation and social exclusion. It also provides a formal structure under which NGOs and government organizations can network on programs and activities that relate to people affected by leprosy. In addition, the coalition can become a potent and effective partner in the implementation of the WHO guidelines on strengthening the participation of people affected by leprosy in leprosy services.

This coming together as a national coalition would not have been possible without the recognition that this is a multi-sectoral and multi-disciplinary concern and that leprosy is everybody's business. It is an acknowledgment that people affected by leprosy are not only clients on the receiving end of policies but also partners with a role in addressing the social dimensions of the disease as well as in supporting leprosy control.

Now we have come together, the bigger challenge will be to stay together and work together to build a truly inclusive society. Going forward, the role of funding partners and other government agencies in nurturing this effort will be critical.

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AUTHOR: Arturo C. Cunanan, Jr.

Arturo C. Cunanan, Jr. MD, MPH, PhD is Chief of the Culion Sanitarium and General Hospital, Department of Health, Philippines.

FOOTNOTE

*Organized by the Culion Sanitarium and General Hospital (Culion Leprosy Control and Rehabilitation Program) in collaboration with the National Leprosy Control Program (DOH), Sasakawa Memorial Health Foundation and Culion Foundation, Inc.