World Health Organization unanimously approves plan to improve epilepsy care, reduce stigma

By Nancy Volkers, ILAE communications officer

 

On 27 May 2022, World Health Organization Member States approved the Intersectoral Global Action Plan on Epilepsy and other Neurological Disorders (IGAP) at the 75^th World Health Assembly in Geneva, Switzerland.

Four international organizations and 116 Member States spoke in support of the plan, which passed unanimously.

IGAP will address the challenges and gaps in providing care and services for people with epilepsy and other neurological disorders that exist worldwide and ensure a comprehensive, coordinated response across sectors.

“ILAE is grateful for the attention to the needs of people with epilepsy on part of the WHO, as well as to the Member States supporting its approval,” said J. Helen Cross, president of ILAE.

In November 2020, the Seventy-third World Health Assembly adopted resolution WHA 73.10 to develop IGAP in consultation with Member States. In January 2022, a revised draft was approved at the 150^th session of the WHO Executive Board.

IGAP includes two global targets specific to epilepsy to be achieved by all Member States by 2031:

• All countries will have increased service coverage for epilepsy by 50% from the current coverage in 2021.
• 80% of countries will have developed or updated their legislation with a view to promoting and protecting the human rights of people with epilepsy..

ILAE has developed a 90-80-70 action cascade as part of its roadmap to support the urgently needed expansion of  health and care services for people with epilepsy. The aims of the action cascade are that by 2031:

• 90% of people with epilepsy are aware of their diagnosis as a treatable brain disorder
• 80% of people with epilepsy have access to affordable, appropriate, safe anti-seizure medication
• 70% of people with epilepsy receiving treatment achieve adequate seizure control

“We look forward to working with all partners to achieve the IGAP targets, which will improve care and quality of life for people with epilepsy and their families,” said Dr Julie Hall, ILAE’s Executive Director.

Focus areas

To meet the global targets, IGAP includes proposed actions for Member States, the WHO Secretariat, and national and international partners in several areas:

Access to services for epilepsy – Approximately 70% of people with epilepsy can be seizure free with treatment. However, treatment gaps exist in every country in the world. The current treatment gap estimate is 75% in lower-income countries and is substantially higher in rural areas.

Engagement and support for people with epilepsy – People with epilepsy and their families are stigmatized and discriminated against as a result of the misconceptions and negative attitudes that surround epilepsy. This leads to human rights violations and social exclusion. In some settings, children with epilepsy may not be allowed to attend school; adults may not be able to find suitable employment or to marry.

Epilepsy as an entry point for other neurological disorders – Epilepsy can be secondary to other neurological conditions, such as stroke or traumatic brain injury. It also can occur along with other conditions; for example, 19% of people with epilepsy also have migraine, and about 26% of adults with epilepsy also have intellectual disability.

With support, the IGAP will help to strengthen the prevention, detection, care, treatment, and equal opportunities for people with epilepsy and other neurological disorders worldwide.

About epilepsy

• Epilepsy affects people of all ages, genders, races and income levels.
• Poor populations and those living in low- and middle-income countries bear a disproportionate disease burden which significantly impacts on economic and social development.
• In many parts of the world, people with epilepsy and their families suffer from stigmatization and discrimination due to ignorance, misconceptions and negative attitudes surrounding the disease. They often face serious difficulties in education, employment, marriage, and reproduction.
• The risk of premature death in people with epilepsy is three times higher than the general population. Important causes of death and injury include sudden unexpected deaths in epilepsy, status epilepticus, burns, drowning and suicide.
• Excess mortality is higher in low- and middle-income countries and is associated with lack of access to health facilities, large treatment gaps, and a failure to address the potentially preventable causes of epilepsy.
• Epilepsy often co-exists with and can be compounded by other comorbid health conditions, including other neurological disorders, necessitating a synergistic approach.

Learn more about IGAP or review the revised draft.