When the Problem with Epilepsy Treatments Goes Beyond a Lack of Medication

Antiseizure medications cost as little as $5 per year, so how is it possible that 80% of people with epilepsy in Africa do not receive the medical treatment they need? This is the nagging question that our client, the BAND Foundation, wanted help in addressing.

As Program Director at Geneva Global, I began to work with Gardiner Lapham at the BAND Foundation to solve this problem, a continuation of ongoing support in this area. We quickly learned that the scope of the problem is dramatic and isn’t all about drug procurement. Over ten million people with epilepsy live in Africa and most don’t have access to antiseizure drugs or epilepsy care. There are a multitude of factors that contribute to this: stigma and discrimination; distrust of medical providers; lack of prioritization in national health agendas; weak health care and drug delivery systems; and limited provider knowledge around how to treat and diagnose epilepsy, to name a few.

We asked ourselves: how can we help to narrow this so called “treatment gap” from the other side of the world? We chose to work directly with people affected by epilepsy and the community organizations that champion their cause. We wanted to understand the specific needs of epilepsy advocates and how we could help them to amplify their voice and collective action for change.

The BAND Foundation and Geneva Global came together with the International Bureau for Epilepsy (IBE), working closely with their African-based chapters, to explore what kind of support might help them have a greater impact. We conducted a series of interviews and questionnaires that helped us better understand the needs of our local partners. Many had a background in medicine, or community outreach and support, but not as many in advocacy. There was an overwhelming demand for basic tools and guidance on how to influence communities; traditional and local leaders; those in the medical field; and even national level government and ministries.

Armed with a clear direction of need, we worked with our partners to build an epilepsy advocacy toolkit. Providing real-life examples from their peers; step-by-step instructions based on actual situations; tips for engaging communities; and a spectrum of tools and templates gives community-based organizations looking to expand their advocacy and impact a step-up in taking advantage of the opportunities available to them. The toolkit provides guidance on how to use tried and tested models.[1] It includes a detailed explanation and how-to guide on common advocacy planning tools like the 5 Whys?, PESTLE analysis, stakeholder analysis and developing “SMART” objectives – all explored through African based examples focused on epilepsy. It also includes many examples of advocacy in action by peers with the intention of creating a greater sense of community and demonstrating success of others in similar situations.

The toolkit was developed through a collaborative process with IBE Chapters and leadership; the BAND Foundation; Geneva Global; and a collection of international experts from international organizations and health professions. It responds to identified needs of community organizations, providing practical ideas and templates to design and develop effective advocacy campaigns. With significant input, case studies, and experiences from IBE chapters, the toolkit captures the real-life situations local advocates are likely to deal with.

Alongside the development of the toolkit, the BAND Foundation is providing additional small grants for parallel advocacy work, along with in-depth trainings on the content of the toolkit to help elevate the work, impact, and asks of community-based organizations to the national and international level. The toolkit also talks about what is going on at that international level and provides information and insights on how to engage with these larger platforms. Hearing the voices of advocates from these communities is vital not only in developing practical and workable solutions at the local level, but also at the international level. Their insights are invaluable, and the toolkit aims to provide guidance and how and to whom to raise their voices.

While 2020 saw the introduction of the draft resolution on Global Actions on epilepsy and other neurological disorders at the World Health Assembly, there is a great deal of work still to be done to ensure the prioritization of epilepsy at the national and international levels. Local organizations can play a key role both informing and putting pressure on health ministries, local governments, and international bodies and together can have a bigger impact than lateral international pressure alone.

Significant success in reducing the burden of epilepsy can only come from work grounded in local expertise and action. The Epilepsy Advocacy Toolkit is one step forward in equipping a new generation of advocates with the tools they need to bring about change.

[1] For more information about each of these tools see the Advocate’s Toolkit for Making Epilepsy A Priority in Africa, 7 Feb. 2021 (Module 2: Planning Your Advocacy p. 15 and Annex 2: Tool Templates p.56)