In a world focused on stopping Covid-19, I’ve watched as many of the diseases already largely ignored by governments and scientists have been pushed further into the shadows. This is despite the fact that they kill, disable, disfigure and debilitate hundreds of millions of the most marginalised and vulnerable communities.
These diverse and neglected diseases most affect people living in poverty in tropical and sub-tropical regions, without adequate sanitation and in close contact with infectious vectors, domestic animals or livestock.
On top of the physical harm these diseases cause, they also damage people’s wellbeing and that of their families and communities. Those affected often experience stigma and discrimination – even within their own families – which can lead to isolation, mental illness and deepening poverty.
On 28 January, the World Health Organization launches a new ‘roadmap’ to focus and mobilise governments to tackle several of the world’s most neglected tropical diseases. Endorsed by WHO member states in November 2020, the roadmap comprises a range of targets set to be achieved by 2030.
Whilst progress has been made in controlling and even eliminating some of these diseases in certain countries, several of the targets are ambitious – not because they require vast investments in research to develop complex pharmaceutical treatments and vaccines, but because these diseases and the people they most harm remain forgotten or at the bottom of governments’ and development funders’ priorities.
Take podoconiosis, a highly neglected condition I have worked on over the past 20 years. Podoconiosis is a progressive, debilitating form of leg swelling caused by many years of barefoot contact with irritant soil in highland tropical areas. It affects some of the most disadvantaged people in 27 countries across three continents. Podoconiosis is commonly misunderstood, causes great ostracism and distress, ruins the livelihoods of people that suffer from it, and is so neglected that it does not even feature as one of the 20 diseases included in the roadmap.
There are an estimated four million people affected globally, with many more millions at risk, yet podoconiosis is preventable and treatable and may be the only non-communicable disease which can be eliminated in the foreseeable future.
In the absence of the political commitment and action needed to eradicate podoconiosis and treat and care for those already affected, people are left to suffer in silence and isolation.
The voices of affected people must be heard in the design and implementation of treatment and prevention programmes, as well as efforts that seek to address the poverty and inequity experienced by affected communities.
There must be a deeper exploration of what it means to be affected by each disease, local people’s understandings of the conditions, and how the disapproval they face from their communities impacts their daily lives.
We need more knowledge through research so that advances in treatments and therapies are translated into elimination and control programmes that reach all affected people and help to change behaviours, whether this is face-washing to prevent the eye disease trachoma or shoe-wearing to prevent podoconiosis. Research and advocacy must also highlight and help to address the social, political and economic conditions that make people more vulnerable to these diseases. If mass drug treatment and other strategies are divorced from the realities and experiences of communities, then they may inadvertently exclude and stigmatise people and are likely to be less effective or even fail.
Supporting and strengthening research capacity and leadership in endemic countries is vital. Local evidence produced by domestic researchers can be far more persuasive for politicians and senior officials who may be less willing to listen to advice presented to them by flown-in foreign experts and consultants. Without this ownership, efforts are less likely to be defined and delivered by national and local governments, nor integrated and prioritised in national health plans and budgets as the new roadmap seeks to motivate.
The new roadmap is a valuable tool for mobilising and coordinating commitments and actions over the next ten years and to target the outcomes needed to improve lives. However, if it is to be translated into real transformative changes that benefit affected and vulnerable people, then these diseases must not be seen as solely medical conditions to be treated with drugs and therapies. They embody the failures of health systems, governments, and societies to tackle the structural inequalities and injustices that allow these cruel and ignored diseases to thrive.
The author is by Gail Davey, Royal Society for Tropical Medicine and Hygiene
This opinion was originally published by Thompson Reuters Foundation News and is part of the 5S Foundation project partnership led by the Brighton and Sussex Medical School (BSMS) in partnership with IDS
