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 CNTD-supported, DFID-funded, Mass Drug Administration against Lymphatic Filariasis/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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Introducing COUNTDOWN’s newest partner: UL-PIRE

At the end of 2015, DFID approved the continued inclusion of Liberia within the COUNTDOWN consortium following successful control of the Ebola epidemic. The COUNTDOWN ‘family’ were elated with this confirmation from DFID, emphasising team Liberia’s integral importance within the COUNTDOWN consortium. Given the critical focus on implementation research for COUNTDOWN and the Liberian Ministry of Health (MoH), as plans for the inception year got underway in Liberia, it was clear to the MoH that they needed to engage with a national research partner.

The MoH underwent a transparent and systematic approach to selecting a research partner that would be able to support implementation research for COUNTDOWN in Liberia. Initially, the MoH identified the core competencies that the research partner must have. These were: strengths in COUNTDOWNs core research areas (social science, health economics and evidence synthesis); good financial management capacity; and infrastructure able to support additional staff. Once core competencies had been identified, the MoH identified five possible research partners. Based on their alignment to the above criteria, these five partners were reduced to three by a team at the MoH. Members of the MoH then made site visits to each of the three remaining research partners to understand more about their work and explore synergies with the COUNTDOWN programme. Following these site visits, with the support of the LSTM programme management team, the MoH identified the most suitable implementation research partner for COUNTDOWN Liberia.

Following this detailed selection process, COUNTDOWN are delighted to introduce the University of Liberia-Pacific Institute for Research and Evaluation (UL-PIRE) as our newest implementation research partner. Fred Sosu, Research Coordinator from UL-PIRE was able to attend our recent partners annual review meeting and it was a great pleasure for all involved in the consortium to understand more about UL-PIREs work and explore in detail their involvement in the partnership. UL-PIRE has a wealth of experience in the delivery of health systems research projects as well as those that span other disciplines such as agriculture, water, sanitation and education.  Project evaluation, survey development and administration are core competence strength. With a strong focus on ethics and community engagement they provide unique and innovative perspectives from the Liberian context.

As the inception year continues within Liberia, the Liberian MoH and all other COUNTDOWN partners are very much looking forward to a long and fruitful partnership with UL-PIRE.

The Ebola outbreak and the wider health system: understanding impact and the way forward in Liberia

By Laura Dean, Anthony Bettee, Kate Hawkins, Sally Theobald and Karsor Kollie

During the recent Ebola outbreak Liberia lost over 185 of its professional health workforce. Trust between health workers and communities broke down and resources were diverted from routine health system activities to control the outbreak. This resulted in the near collapse of the health system as well as changes in the disease landscape and increased vulnerabilities related to the social determinants of health for many people.  As the health system is rebuilt, it is critical that the full impact of the outbreak at all levels of the health system is understood from the perspective of different stakeholders, in order to put forward strategies to strengthen the resilience of the health system.

Small grant

In collaboration with the Ministry of Health in Liberia, COUNTDOWN colleagues were recently awarded a small grant for research engagement from the Thematic Working Group on Health Systems Research in Fragile and Conflict Affected States. We will use this to convene two stakeholder meetings, one at the national and one at the county level that explore the impact of the Ebola outbreak on the health system with a specific focus on  the Neglected Tropical Disease (NTD) control programme. We aim to highlight the opinions of people whose voices are often not heard at such meetings, for example community members and frontline health staff. We hope these meetings will provide a unique opportunity to gain deeper understanding of the impact of health system collapse on vertical programmes and explore how these programmes can help support the wider system.

The Neglected Tropical Disease Programme in Liberia

The NTD control programme in Liberia is an integrated programme established in 2012 that engages with the health system from central Ministry of Health to the community level. During the Ebola outbreak the NTD programme ceased activity in order to support Ebola control, however it is now slowly beginning to resume activity. However before it starts up fully there is a need to understand in more detail the challenges faced in NTD control both prior to and since the Ebola outbreak. The stakeholder meetings allow reflections on the operations of the NTD control programme prior to the Ebola outbreak, as well as assessing how the Ebola outbreak may allow for a revitalisation of the programme to achieve a scaled-up, equitable response to NTDs in Liberia.

Follow up

As a result of the meeting we hope to develop a research agenda for health systems with specific focus on NTD control in Liberia that we can begin to address within COUNTDOWN. The engagement of international stakeholders from other Ebola affected countries such as Sierra Leone aims to increase the transferability of this research agenda and its findings, as well encouraging south-south collaboration and lesson learning as health systems are rebuilt. Watch this space for more information and outputs from COUNTDOWN’s first stakeholder meeting in Liberia!

Image: Courtesy of UNMIL/Emmanuel Tobey

COUNTDOWN launches in Liverpool with a special guest from Liberia by @sci_ntds

By Alan Fenwick, Imperial College

The presence of Dr Anthony Bettee at the COUNTDOWN launch was poignant because he had flown from Liberia. In two weeks, providing there are no new cases, Liberia will be declared Ebola free. However during the last 9 months almost 200 health workers have paid the price for their dedication and loyalty and lost their lives to Ebola infection. Despite this tragic result Liberia is ready to restart treatment of schistosomiasis and STH. We wish them well.

Other speakers included Nana Biritwum and Margaret Gyapong who were both brilliant. Louis Albert Tchuem Tchuente gave the Cameroon perspective.

The project will be directed by Professor Russell Stothard and I hope he thrives and grasps this exciting DFID funded research project.

COUNTDOWN Research Consortium calls ‘time’ on Neglected Tropical Diseases (NTDs)

The COUNTDOWN research consortium has been launched today following a £7 million grant allocation from the UK Department for International Development (DFID) earlier in the year.

As part of the push towards universal access to health services, there is international consensus that NTDs such as onchocerciasis, lymphatic filariasis, soil-transmitted helminthiasis, schistosomiasis and trachoma, must be tackled more effectively and NTD control programmes need more assistance.

Where some of these diseases can be treated with a combination of antihelminthics and antibiotics they continue to cause ill-health and disability on a massive scale.

Pharmaceutical companies provide much of the needed medicines for free and Mass Drug Administration (MDA) programmes have managed to deliver these drugs to millions of people living in need.

COUNTDOWN will trial and evaluate new approaches to drug distribution, which target those who are currently overlooked and excluded. It will also examine how NTD programmes can be better integrated into broader health system responses.

COUNTDOWN Director, Professor Russell Stothard, said: “I would like to thank the UK Department for International Development for financing COUNTDOWN. Through a multi-disciplinary partnership which brings together researchers from Cameroon, Ghana, Liberia and Nigeria, the UK, and USA, we hope to create new knowledge which will kick-start other countries’ responses to NTDs and provide practical health systems guidance on how to speed-up and scale-up action.”

The partners in the COUNTDOWN consortium bring a substantive network of contacts in the NTD community including funders, academic and research institutions, drug companies, Ministries of Health, non-governmental organisations (NGOs) and policy stakeholders such as the World Health Organisation. This will ensure that COUNTDOWN benefits from the best research intelligence from within the NTD community and stays well informed.

NTD Programme Manager Nana-Kwadwo Biritwum said: “Ghana’s NTD Programme has made good progress over many years of programme implementation with its control and elimination strategies. The challenge now is to ensure elimination of lymphatic filariasis, onchocerciasis and trachoma. This end game stage poses technical challenges and can best be addressed by projects or initiatives such as COUNTDOWN 2020”

COUNTDOWN is working to support the achievement of the 2020 targets set out in the London Declaration on NTDs.

Partners in the COUNTDOWN Consortium include: the Cameroon Ministry of Public Health; the Centre for Schistosomiasis and Parasitology in Cameroon; Ghana Health Service; FHI 360; Liberia Ministry of Health and Social Welfare; Pamoja Communications and Liverpool School of Tropical Medicine (LSTM) which also acts as host and administrative hub of the Consortium.

The consortium’s Twitter handle is @NTDCOUNTDOWN and its website will go live early 2015.