Don’t be Alone, Don’t be Afraid: Partnerships Fostered Between the NTD Programme and Communities in Liberia

By Karsor Kollie, Laura Dean, Anna Wickenden and Sally Theobald

Ma Grace, Pa Abraham and Pastor Joseph stood strong to tell their testimonies of life with either lymphatic filariasis (big foot) or leprosy in Maryland County Liberia. Their inspiring journeys of overcoming challenges and being part of community life meant that they were important advocates for the NTD programme, bringing much-needed visibility and inclusion of people affected.

Their key educational messages to their peers – others from Maryland with lymphoedema or leprosy, school children and community health volunteers and community health workers were:

1. Don’t be alone, don’t be afraid, speak to others

2. Visit the health centre

3. Take your drugs

This was an exciting and historic event to celebrate World Leprosy Day, increase awareness of the integrated approach to morbidity management and launch the LF/Onchocerciasis MDA programme; and the first time that people affected by these diseases came together. This created an important space for patients to meet together, many for the first time, and further support to strengthen these exchanges with each other will have impact on many levels.

Community health volunteers and workers play a critical interface role in NTD and other health programmes, linking communities and health systems. One community health support supervisor shared her experiences of contributing to “Ending the Neglect and Stigma: to achieve zero disabilities in girls and boys affected by NTDs” (the theme of the day’s event); and also explained how they provide psychosocial and medication support. This important cadre of “foot soldiers” was appropriately celebrated. They also demonstrated how to measure clients and distribute medicine.

Karsor Kollie, director of the NTD programme and COUNTDOWN country manager, provided awareness and education on the different focus NTDs: Buruli ulcer (everlasting sore), lymphatic filariasis (big foot/big water bag), leprosy and onchocerciasis. He broke down complex concepts into clear, digestible chunks and the audience were really engaged.

We also heard from Dr Evelyn Kandakai, ambassador for the NTD programme and former Minister of Education. She began by thanking the audience for maintaining peace in the recent elections. She then had three key messages:

1. Be a friend to people affected by NTDs

2. Cooperate with programme work

3. Make Liberia environmentally friendly

She asked the audience to “put their arms around the Ministry of Health and Karsor Kollie.”

Dr. David Ross, CEO, Task Force on Global Health, launched the MDA programme against LF/Onchocerciasis in Maryland County. The MDA programme is supported by the Centre for Neglected Tropical Diseases (CNTD) at the Liverpool School of Tropical Medicine and funded by the Department for International Development (DFID). The launch included several participants including the NTD Director, former Deputy Chief Medical Officer (DCMO) and Director of Community Health taking part, being measured, given the appropriate number of pills, and swallowing the mectizan and albendazole to demonstrate that the medicines are safe, and everyone should take advantage of them.

Reflecting on the day, it was great to see partnerships celebrated at different levels of health systems. The emphasis on the critical role of patients, communities and CHVs and the importance of their ownership and agency was refreshing and important. Strengthening these partnerships will be critical in meeting the challenges ahead.