Treating and defeating epilepsy in low resource settings

In this blog for International Epilepsy Day 2015, Alex Wright, MSc Consultant for the Department of Mental Health and Substance Abuse at the World Health Organization shares her experiences in this blog on supporting the implementation of the WHO Programme on Reducing the Epilepsy Treatment Gap​.

Upon arrival to WHO in early 2014, I was tasked with supporting the implementation of the WHO Programme on Reducing the Epilepsy Treatment Gap. What I’ve learned over the past year is both fascinating and astonishing. I’d like to share some of this learning here. 

Epilepsy is a noncommunicable neurological disorder that affects over 50 million people worldwide. Four out of five people with epilepsy globally live in low- and middle-income countries (LAMICs)and up to 70% of people with epilepsy can actually be seizure free when provided with anti-epileptic medicines. 

Epilepsy is characterized by recurrent seizures and has many causes. Examples include head injury, neurological infections and brain damage at birth. In many cases, the cause of epilepsy is unknown.

Despite the existence of inexpensive and effective anti-epileptic medicines (which can cost as little as US$ 5 per year per person!), approximately 75% of people in LAMICs don’t receive treatment. In some countries in Africa, an estimated 90% of people with epilepsy go untreated. This difference between the number of people with epilepsy who need treatment and the percentage who actually receive it is called the ‘epilepsy treatment gap’.  The size of the gap is shocking. It is especially unjustifiable given that affordable, effective solutions exist that would allow millions of people with epilepsy to live normal lives. 

While working with countries in different regions of the world, I’ve discovered that the reasons for the epilepsy treatment gap are numerous and can vary from one country to another. One of the barriers to accessing treatment is the stigma and discrimination that people with epilepsy and their families experience not only in low- and middle-income countries, but also in high-income countries.

Misconceptions about epilepsy are rife in certain communities, with people wrongly believing that epilepsy is contagious, that it’s caused by spiritual possession, or that people with epilepsy cannot go to school, work, or have families. In some countries, these misconceptions are reflected in laws that violate the human rights of people with epilepsy. The lack of knowledge around epilepsy can often dissuade people with epilepsy from seeking treatment, for fear of the societal exclusion that may follow.

There are other contributing factors to the treatment gap. Examples include inadequate capacities of health care systems, a lack of trained health-care providers, inequitable distributions of resources, limited availability of anti-epileptic medicines, and low prioritization of epilepsy.

WHO and its partners have long been working to reduce the epilepsy treatment gap and raise awareness about epilepsy. Nearly 20 years ago, the Global Campaign Against Epilepsy: Out of the Shadows was established as a partnership between WHO, the International League Against Epilepsy (ILAE), and the International Bureau for Epilepsy (IBE). The campaign sought to raise general awareness and understanding about epilepsy, and support countries to close their epilepsy treatment gaps. As part of this initiative, projects were carried out in countries such as Brazil, China, and Georgia, to name a few.

As a specific example, the project in China was carried out in six provinces and demonstrated that it was possible for trained, non-specialist health-care providers to diagnose and treat people with epilepsy. Importantly, the treatment gap in the project area of the participating provinces was reduced by 12.8%, which was a statistically significant reduction. Following the success of the programme the government has scaled up this project to cover 75 million people in 18 provinces, and has trained over 24,000 public health workers in epilepsy management.

This brings me to the current work being conducted through the WHO Programme on Reducing the Epilepsy Treatment Gap. The WHO Programme is a four-year project that is piloting an improved model of epilepsy care in four countries: Ghana, Mozambique, Myanmar and Viet Nam. The Programme supports the pilot countries and their Ministries of Health to improve access to epilepsy treatment and reduce the stigma surrounding epilepsy.

More specifically, the WHO Programme supports countries to expand the skills of non-specialist health-care providers to diagnose, treat and follow-up people with epilepsy through training and supportive supervision. The WHO Programme also mobilizes NGOs, community groups and volunteers to raise awareness about epilepsy and support people with epilepsy and their families. This awareness-raising comes in a variety of forms, including community meetings, radio talks, school visits, and communications materials such as videos, posters, and brochures. 

Several actions are also taken to assist with health systems strengthening. These activities help to ensure sustainable access to anti-epileptic medicines, support the availability of strong and functional referral systems, and enable better monitoring of epilepsy within health information systems. A number of normative tools and protocols have been developed by WHO for activities such as training, communications, and monitoring and evaluation. These tools are available on request. 

The work of the WHO Epilepsy Programme is an important step towards closing the treatment gap for thousands of people with epilepsy in LAMICs. Now in its later stages, we are beginning to see the impact that the WHO Epilepsy Programme is having on participating communities. For example, Programme Coordinators in Ghana report that stigma is decreasing in their communities. One Coordinator reported that a man from his village brought a woman with epilepsy to the clinic for treatment. Since then, they’ve gotten married and had a healthy baby. They are role models for the community.

Despite these successes, there is more work to do. To support work beyond the WHO Programme, a Global Information Kit on Epilepsy has been developed. The Information Kit contains information about epilepsy, descriptions of the WHO Programme in the pilot countries, and recommendations for action. The Information Kit will be available shortly, so please check the website.

At the recent 136th session of the WHO Executive Board, a draft resolution was passed on the ‘Global burden of epilepsy and the need for coordinated action at the country level to address its health, social and public knowledge implications’. The draft resolution had broad support from a wide variety of countries, and indicates the strong momentum and political commitment that surrounds epilepsy at this time. 

I’m grateful for the learning I’ve attained through my work and to have the opportunity to see the impact it’s having on communities. I encourage each and every person to find out more about epilepsy, ensure they know the facts, and do their part to help close the epilepsy treatment gap.

To find out more, visit the WHO Epilepsy website pages where you can view and download more resources.

Youtube video: WHO: Epilepsy, Treat it, Defeat it

Learn more about International Epilepsy Day 2015

References and further reading:

1. AFRO. (2004). Epilepsy in the WHO African Region: Bridging the Gap. Brazzaville, Congo.
2. Barucha, N., Carpio, A., Diop, G. Chapter 11: Epidemiology in developing countries. In Engel, J., Pedley, T. eds. (2008). Epilepsy: A comprehensive textbook. Philadelphia: Lippincott Williams & Wilkins
3. De Boer, H., Mula, M., Sander, J. (2008). The global burden and stigma of epilepsy. Epilepsy & Behaviour, 12(4), 540-546.
4. Diop, A., de Boer, H., Mandlhate, C., et al. (2003). The global campaign against epilepsy in Africa. Acta Tropica 87(1), 149-159.
5. EURO. (n.d.). Epilepsy in the WHO European Region: Fostering Epilepsy Care in Europe.​
6. Meinardi H et al. on behalf of the ILAE Commission on the Developing World. (2001). The treatment gap in epilepsy: the current situation and ways forward. Epilepsia, 42, 136-149
7. World Health Organization, International Bureau for Epilepsy, & International League Against Epilepsy. (n.d.). Global Campaign Against Epilepsy: Out of the shadows. 
8. WHO (2005). Atlas: Epilepsy Care in the World. Geneva: World Health Organization
9. WHO (2004). Epilepsy in the WHO Africa region, bridging the gap: the Global Campaign Against Epilepsy: “Out of the Shadows”. Geneva: World Health Organization.
10. World Health Organization. Fact Sheet No. 999: Epilepsy. Geneva: World Health Organization