This week’s Kigali Declaration on Neglected Tropical Diseases is a major milestone in global health. Professor Gail Davey OBE, Director of the NIHR’s Global Health Research Unit on Neglected Tropical Diseases, Professor of Global Health Epidemiology at BSMS and a leading authority on stigmatising skin diseases, argues that the Declaration both embodies the principles of partnership and ownership by low and middle income countries (LMICs), and provides the mechanisms to put these into practice over the next decades.
Neglected tropical diseases (NTDs) are a group of chronic infectious diseases that affect people in many low and middle income countries. Although they are preventable and often treatable, knowledge of NTDs within healthcare systems is limited and more than 1 billion people worldwide suffer extensive pain, disfigurement and disability, as well as discrimination and social stigma that contribute to a cycle of poverty in affected areas.
The Kigali Declaration, launched on 27 January 2022, is the political brawn behind the strategic brains of the World Health Organization’s NTD Roadmap 2021-30. It is a significant document, with commitments by governments, industry and NGO partners to deliver ambitious targets on a host of diseases, which affect an estimated 1 billion people globally, but are both treatable and preventable.
Right at its heart are the principles of partnership and country ownership. These principles have driven the exhaustive process of consultations with national governments, mayors and local government leaders, intergovernmental bodies, pharmaceutical companies, NGOs, research institutions, youth and more under the ‘Uniting to Combat NTDs’ banner. These same principles will continue to drive the implementation of the commitments that have been pledged this week.
Unsurprisingly, the launch of the Kigali Declaration - intended to be linked to the 26th Commonwealth Heads of Government Meeting - has twice been delayed by Covid-19. Now, at last, the moment has come, and the Kigali Declaration will be launched virtually on 27 January 2022, with a stream of events and engagements to amplify and embed the commitments. But virtual events are by definition remote, and can seem disengaged from realities on the ground.
This is why my colleagues and I will be in Kigali next week, at the invitation of the Government of Rwanda, which is at the forefront of efforts to tackle NTDs in Africa. We will then run a series of training workshops with our partners in Rwanda, Ethiopia and Sudan, one way that our NIHR-funded partnerships on NTDs are bringing the ‘remote’ to life.
Gail Davey, Profesor of Global Health Epidemiology at BSMS
Partnerships to tackle podoconiosis and stigmatising skin diseases in East Africa
Rwanda, whose capital city give the Declaration its name, ranks high among NTD-affected countries in Africa for its progress against intestinal worms, river blindness, and bilharzia.
On 30 January, we are hosting a real-life event in Kigali with Rwanda’s Minister of Health and University of Rwanda, as well as health leaders from elsewhere in Africa as well as the UK, to highlight our successful partnerships and progress on tackling the debilitating disease podoconiosis. This progressive leg swelling condition affects people in every Rwandan district, reducing productivity and causing great suffering through the stigma it attracts. It is a significant public health problem across East Africa, and Rwanda has shown important leadership in ‘owning’ the condition and planning for its elimination. Given the size of the country and the strength of its health system, it could be the first country to eliminate podoconiosis.
For the past five years, our NIHR Global Health Research Unit on NTDs at BSMS has also been working with our partners in Rwanda’s much larger northern neighbours, Ethiopia and Sudan, to study diagnosis, prevention and treatment of podoconiosis other NTDs that cause leg swellings, like mycetoma, and debilitating skin infections such as leprosy and scabies.
While partnership is implicit to this work, we realised it should not be taken for granted. So we have explicitly examined the partnership process and propose an academic partnership maturity model based on the Capability Approach (itself borrowed from development science). We’d encourage other groupings formed in the wake of the Kigali Declaration to use similar reflexivity. Better understanding of the level of maturity of their partnership will enable more realistic and value-driven engagement.
Our mostly biomedical Global Health Research Unit is complemented by a parallel programme, the Social Sciences for Severe Stigmatising Skin Conditions (5S) Foundation, also funded by NIHR and addressing the same NTDs in the same three countries, but from a predominantly medical anthropology perspective. Although now halfway through its life, the Covid-19 pandemic has meant that the full 5S Foundation team has never been able to meet in person – so this will be an excellent opportunity to network and share knowledge.
A doctor preparing to treat patients with podoconiosis in Ethiopia. Credit B.J. Visser
We are also delighted that NIHR will fund Phase 2 of the Global Health Research Unit on NTDs. This will enable a further 5 years’ research and action on podoconiosis, mycetoma and scabies in partnership with institutions in Ethiopia, Sudan and Rwanda, with partners including the University of Rwanda and the Rwanda Biomedical Centre. The new programme comprises 12 research projects, focusing on the causes of disease, geospatial mapping, diagnostics and drug development, and understanding how interventions can be implemented in real world settings.
The Global Health Research Unit and 5S Foundation can directly support country ownership, as we are in Rwanda. The event on 30 January will enable the Rwanda Ministry of Health to reflect on its lead role in the writing of the Kigali Declaration, and enable the Rwanda Biomedical Centre to showcase its work against scabies, rabies, snakebite, leprosy, yaws, river blindness, intestinal worms, bilharzia and podoconiosis. And vitally, it will give a voice to those who have too long been voiceless, those affected by NTDs.
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