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

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

Patients in Attendance

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 and
  3. Take your drugs.

Zero disability

Community health volunteers and community health 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). They 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 such as 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 in Liberia. 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 and 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 Mass Drug Administration against the LF/Onchocerciasis in Maryland County. This included several participants including the NTD Director, former Deputy Chief Medical Officer (DCMO) and Director of Community Health taking part. They were measured using the height pole, given the appropriate number of pills, and swallowed the mectizan and albendazole to demonstrate that the medicines are safe, and everyone can safely take 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 Community Health Volunteers (CHVs) and the importance of their ownership and agency was refreshing and important. Strengthening these partnerships will be critical in meeting the challenges ahead.

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