Hesperian Health Guides
Improving care for people with epilepsy
HealthWiki > Epilepsy and Seizures > Chapter 1: Introduction > Improving care for people with epilepsy
But given the amount of time that has passed, little progress has been made to help people with epilepsy until more recently. It is worth looking at that progressâ and at the challenges that remainâsince the World Health Organization (WHO) began suggesting that governments prioritize epilepsy as a global health issue.
Global campaigns against epilepsy
In June 1997, WHO launched the campaign âOut of the Shadowsâ to improve epilepsy awareness and treatment worldwide. The campaign pledged to address âthe hidden sufferingâ of more than 40 million people throughout the world affected by epilepsy forced to âlive secret lives because of ill-informed public attitudes.â WHO organized this effort with the International League Against Epilepsy (ILAE), an association of doctors and scientists, and the International Bureau for Epilepsy (IBE), a network of national epilepsy organizations. (Hesperian worked closely with both organizations during the development of this book.)
The campaign had two general goals: 1) to raise awareness that epilepsy was a treatable brain condition, and 2) to identify peopleâs needs and encourage governments and health agencies to promote diagnosis, treatment, and care for people with epilepsy.
Little changed for people with epilepsy during the campaignâs first phase, so in 2001, WHO launched a second phase to move from awareness to practical action. The campaign began demonstration projects to create real-world models of diagnosis, treatment, care, and prevention, and to encourage government health ministries to develop services and reduce the treatment gap and stigma. This second phase built upon two learnings from the first phase: 1) without access to treatment, working to end stigma cannot succeed, and 2) medical training on epilepsy is poor, and health professionals need better epilepsy education.
WHO funded four demonstration projects in 2012 in Ghana, Mozambique, Myanmar (Burma), and Vietnam. By May 2015, these projects were showing good results, and all 194 countries attending WHOâs World Health Assembly approved a resolution urging all countries, particularly low- and middleincome countries, to develop national health care plans for epilepsy. As the Eswatini Epilepsy Organization summarized a few years later: âThere is very little investment in epilepsy by countries⊠Anti-epilepsy medicines and neurologists are scarce in poor countries⊠Epilepsy is not prioritized by governments.â
In 2019, WHO, ILAE, and IBE published Epilepsy: A public health imperative, the first report to summarize conditions facing people with epilepsy worldwide. Using the experiences of the demonstration projects as a guide to what was possible, the report promoted changes that would ensure people with epilepsy receive the care and treatment they deserve and need.
âStigma is a significant contributor to poor physical and mental health in people with epilepsy.â
âWorld Health Organization, Epilepsy: A public health imperative, 2019
In only a few years, the demonstration projects had increased the numbers of people accessing treatment by 23% in Ghana, 45% in Myanmar, and 38% in Vietnam. Thousands of people participated in campaigns to reduce stigma. However, when the demonstration projects and their funding ended in 2017, the numbers of people getting treatment declined significantly.
These low-cost demonstration projects successfully proved that treatment for epilepsy was achievable in any country if its government committed to provide it. Unfortunately, many governments have not made epilepsy a priority and treatment remains out of reach for most people with epilepsy.