Opinion: A call for global action and renewed momentum on epilepsy

This year’s World Health Assembly can be a turning point in the fight against epilepsy. Photo by: Shutterstock

When the World Health Assembly meets later this month, national governments will have an essential opportunity to sustain progress on a devastating — but solvable — global health challenge: Epilepsy. This is a critical moment, as the World Health Organization’s focus on epilepsy is set to fade after 2018, which could stall efforts to help tens of millions of affected people worldwide. Now is the time for member states to take action to maintain WHO’s commitment to fight epilepsy.

Epilepsy is often overlooked as a public health concern, despite its wide-reaching impacts. It is the most common chronic neurological disorder globally, affecting over 50 million people—more than the number with HIV/AIDS. This burden falls primarily on the world’s most vulnerable populations, as almost 80 percent of people with epilepsy live in rural and low- and middle-income areas. Though there are effective medicines for epilepsy, 75 percent of these people do not get the treatment they need.

As a result, people with epilepsy and their families often face damaging stigma, high psychosocial costs, and significant health impacts. Due to educational gaps, the disease is widely misunderstood and stigmatized, causing people with epilepsy to isolate themselves, limit their daily routines, and avoid seeking care. This burden can be lethal. Research has found that epilepsy can increase the risk of premature death.

These impacts are especially tragic because epilepsy can be treated effectively and affordably. Seizures may be successfully controlled in approximately two-thirds of the cases, and after several years of successful treatment, antiepileptic drugs may be reduced or withdrawn in some children and adults without a subsequent relapse. Further, cost-effective treatments are included in the WHO Essential Medicines List.

Recognizing these challenges, WHO passed a landmark resolution on epilepsy in 2015. This resolution encouraged countries to prioritize epilepsy and established a three-year reporting period to track progress. However, the reporting term is set to expire in 2018, which threatens to derail international momentum on this issue.

As epilepsy continues to take a heavy toll around the world, this outcome would be disastrous. While countries have achieved some progress since the resolution, much remains to be done.

We are therefore calling on WHO member states to continue focusing on epilepsy both at the national level, through prioritizing national strategies to tackle this condition, and at the global level, ensuring that a new progress report on the 2015 resolution be prepared again at future World Health Assemblies, such as in 2021 and beyond.

Together, governments, civil societies, and the private sector can spark transformative change to provide information and care to every person with epilepsy. We believe that three areas of focus are essential:

  • Leadership and governance: We need international and national leadership to achieve tangible change for people with epilepsy. In particular, national governments can formulate patient-centric policies to promote greater awareness, seek additional funding for education, and allocate resources to epilepsy research.

  • Awareness raising and advocacy: Epilepsy awareness is critical to fight stigma, enable social inclusion, and improve quality of life. By adopting a “whole-of-society” approach, we can mobilize community leaders, schools and school teachers, grassroots public health workers, and people with epilepsy and their families to strengthen public awareness and education. This will address educational gaps and raise awareness across communities, including in schools, workplaces, social groups, and health centers.

  • Care: We need to address the barriers that prevent people with epilepsy from accessing appropriate care, particularly in rural and underserved areas. Innovations in service delivery — such as introducing epilepsy at the primary care level, providing omnichannel education for nonspecialist providers, and leveraging technology to remotely provide health services — can all help to bridge the care gap. Improving the availability and coverage of antiepileptic treatments is also crucial to reducing the current burden of epilepsy.

By focusing on these areas, we can continue to drive progress and deliver hope for the tens of millions of people with epilepsy. As the 2018 WHO progress report documents, national governments in Africa, Asia, Europe, and the Americas have been working steadily to improve epilepsy education and care. We must build and expand on these efforts in the years ahead, but we’ll need action from WHO member states to do so.

Further systematic reporting at the World Health Assembly would be one of the most effective ways to maintain momentum toward achieving more concrete global and national plans and solutions that will ensure a brighter future for those living with epilepsy. National governments must act now to secure a continued WHO commitment to address the impacts of epilepsy worldwide. Most of these issues will be discussed in depth in a dedicated event to be held on May 22 featuring representatives from WHO, civil society, government, medical, and industry communities.

This year’s World Health Assembly can be a turning point in the fight against epilepsy. We have the tools to ease the burden of this disease around the world — we just need to sustain our focus.

Editor’s note: This opinion piece is jointly authored by Martin Brodie, president of the International Bureau for Epilepsy, Samuel Wiebe, president of the International League Against Epilepsy, Bruce Lavin, adjunct professor of Biomedical Science at Georgia State University, and head of external engagement and policy, Neurology Unit, UCB, and Mario Ottiglio, a managing director at the High Lantern Group.

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