Published: 28 January 2022
The Kigali Declaration on Neglected Tropical Diseases, launched on 27 January with CMO Sir Chris Whitty and several heads of state, is a major milestone in global health. Professor Gail Davey, Director of the NIHR’s Global Health Research Unit on Neglected Tropical Diseases, 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 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.
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. This is why my colleagues and I are in Kigali this week, at the invitation of the Government of Rwanda, which is at the forefront of efforts to tackle NTDs in Africa. We are running 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.
Partnerships to tackle podoconiosis and stigmatising skin diseases in East Africa
Podoconiosis is is a painful and progressive leg swelling condition that 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.
Over the past five years, our NIHR Global Health Research Unit on NTDs at Brighton & Sussex Medical School 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. 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.
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.
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 enables the Ministry of Health to reflect on its lead role in the writing of the Kigali Declaration, and its work on towards the elimination of several NTDs. Rwanda's progress shows that these chronic diseases are treatable and preventable, and we welcome the world’s commitment to addressing the challenge.
Professor Gail Davey, OBE is a professor of epidemiology at Brighton and Sussex Medical School, University of Sussex. She is Co-Director of the NIHR’s Global Health Research Unit on Neglected Tropical Diseases, and of the 5S Partnership, funded by the Research and Innovation for Global Health Transformation programme. She is also co-Chair of the NIHR Global Research Training Forum.