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The WHO IGAP and the global fight against epilepsy

Prof Arjune Sen

UK research, global reach

The WHO IGAP and the global fight against epilepsy

Date Published: February 27, 2023

Author: James Matejka

The Intersectoral Global Action Plan (IGAP) for epilepsy and other neurological conditions – published by the World Health Organisation (WHO) in May 2022 – is one of the most significant recent developments in the global fight against epilepsy. In this Research Blog, Professor Arjune Sen, Consultant Neurologist at The John Radcliffe Hospital and member of the #Every1EndingEpilepsy research steering group, discusses the international process of the WHO IGAP, the next steps for collaboratively implementing its recommendations, and the particular challenges faced in low and middle-income countries.

What is the WHO IGAP?

In November 2020, the World Health Assembly (WHA) adopted the proposal of the WHO to develop an IGAP to address the shortfalls and challenges in health services for people living with epilepsy and other neurological conditions. The WHO IGAP report was then approved in May 2022. The IGAP covers a 10-year period from 2022-31 and builds on existing global resolutions, commitments and reports which have previously highlighted challenges presented by epilepsy. This is the first time that epilepsy and other neurological disorders have been recognised as a distinct field by the WHO, representing a unique opportunity for changes to policy and practice that will undoubtedly inform future research into epilepsy and brain health.

What impact could the WHO IGAP have?

The IGAP aims to reduce the stigma, impact and burden of epilepsy and other neurological disorders, including associated mortality, morbidity and disability. It also seeks to improve the quality of life for people of all ages with neurological disorders, as well as promoting brain health and development.

Integral to this, governments around the world are tasked with responding to the recommendations, potentially bringing about real change in policy and practice whilst raising awareness of epilepsy internationally. Importantly, a key strategic objective of the IGAP is to ‘…foster research and innovation and strengthen information systems,’ highlighting the value of ongoing studies in epilepsy.

What work will be done in the UK and internationally to implement the IGAP recommendations?

We will need a concerted effort across the epilepsy community to realise the potential of the IGAP. The WHO have laid out objectives and ambitions – it is up to all of us to deliver those goals.

A great example of the UK efforts towards implementing the IGAP recommendations in the UK is the pioneering #Every1EndingEpilepsy programme, a national epilepsy research collaborative, funded and led by Epilepsy Research UK. This programme brings together key stakeholders to develop a programme of work that will radically advance research through investment, collaboration and action. I am honoured to be a member of the #Every1EndingEpilepsy steering group.

The #Every1EndingEpilepsy programme will provide a roadmap to the UK government to enable implementation of recommendations from the IGAP, as well as the UK Epilepsy Priority Setting Partnership. Epilepsy is desperately underfunded and has been so for decades. There is an enormous mismatch between research monies and the number of people affected by the condition. Therefore, our campaign will seek a commitment from institutional funders to a research investment of £100 for each of the estimated 600,000 people living with epilepsy in the UK. That’s £100 for every 1 in 100 – a £60 million accelerator fund.

You are a neurologist in the UK, how does epilepsy care and research differ here to that in low and middle income countries?

At a time when the UK National Health Service is under such extraordinary pressure, we can forget that, compared to most of the world, we are fortunate. When I landed in Zimbabwe in 2017, I doubled the number of neurologists in the country. That seems staggering, but at that time there was one neurologist for a population of 16 million people. Now there are two. Such statistics are reflected across low to middle income countries. Ghana, for example, has six neurologists for 30 million people. Yet most people with epilepsy live in low to middle income countries. Seizures also carry greater risk in such settings. There are huge diagnostic and treatment gaps whilst epilepsy remains deeply stigmatised and can be attributed to possession or thought to be contagious.

What, though, has always struck me in low to middle income countries, is the warmth and generosity of the people – be that people with epilepsy, their carers or the clinicians. It is not possible to generate enough neurologists quickly, so research needs to focus on improving access to care and availability of treatment. Much of epilepsy in resource-limited settings is preventable. For example, reducing birth trauma, preventing infection and reducing head injuries will all reduce the incidence of epilepsy. Also, multidisciplinary working is crucial. The Epilepsy Pathway Innovation in Africa Study and Oxford Martin Programme on Global Epilepsy, bring together large collaborative groups across a range of specialities, medical and non-medical, to tackle epilepsy.

Perhaps most importantly to improving epilepsy care in low and middle income countries, is that research needs to be culturally contextualised. Only by doing this will endeavours be sustainable. I think it also important to mention that work in resource-limited settings has direct translational benefit to the UK. We learn more from our global colleagues than they do from us. Such bidirectional learning is essential to drive improvements here and abroad.

What do you hope the WHO IGAP will lead to for research into epilepsy?

The WHO IGAP specifically states the aim that ‘The output of global research on neurological disorders doubles by 2031.’ This will be measured by the number of articles published in peer-reviewed journals. I would be delighted to see this goal realised across the breadth of epileptology. All research is important, be that investigation of the causes of epilepsy, development of new technologies to accelerate diagnosis, novel strategies to help the treatment and management of epilepsy, mitigation of risk, implementation research and social engagement. Epilepsy is an inequitable condition. It affects people in resource poor settings more than in the UK and so I would also wish to see greater global partnership in research. This is what will drive better epilepsy care for all.

Read more about the WHO IGAP and how Epilepsy Research UK are responding to it here.