Global Advocacy

WHO Publishes Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders in All Six UN Languages

The World Health Organization (WHO) has published the Intersectoral global action plan on epilepsy and other neurological disorders (IGAP) in all six UN languages.

In May 2022, WHO Member States adopted the IGAP which aims to improve access to treatment and care and quality of life of people with neurological disorders, their carers and families as well as promote brain health across the life course. It includes actions to be undertaken by all stakeholders to attain the global targets.

The strategic objectives of the global action plan address issues such as policy and governance; effective, timely and responsive diagnosis, treatment and care; promotion and prevention; research, innovation and information systems; and a public health response to epilepsy.

Neurological disorders are the leading cause of disability-adjusted life years* and a 2020 Lancet paper cites them as the second leading cause of death globally, accounting for 9 million deaths a year. Despite the high global burden of neurological conditions, access to both services and support for these conditions is insufficient, especially in low- and middle-income countries.

“The burden of neurological disorders is compounded by stigma and discrimination, which can hamper life opportunities, increase the risk of poverty, and lead to difficulties in accessing care,” writes Dr Tedros Adhanom Ghebreyesus, Director-General of the World Health Organization, in the foreword to the publication.

“The IGAP is a major step forward in global efforts to deliver an integrated and comprehensive response, which will allow more people living with neurological disorders to access the treatment and care they need and to live free of stigma and discrimination,” said Dr Dévora Kestel, WHO Director for Mental Health and Substance Use.

Developed by WHO in consultation with Member States and other key stakeholders including people living with neurological disorders, the action plan was endorsed at the 75^th World Assembly in May 2022 under decision WHA 75 (11).

The action plan outlines five strategic objectives: to raise policy prioritization and strengthen governance; to provide effective, timely and responsive diagnosis, treatment and care; to implement strategies for promotion and prevention; to foster research and innovation and strengthen information systems; and to strengthen the public health approach to epilepsy.

Actions suggested under each strategic objective are aimed at countries and partners, with WHO providing technical support and guidance in the implementation of the plan.

There are 10 global targets with measurable indicators to track the achievement of the objectives by 2031. To achieve these targets, the plan also outlines the close collaboration required between stakeholders in the health sector and beyond, as well as the need to support the participation and empowerment of people with neurological disorders, their carers and families.

IGAP Unpacked

Did you know IBE has developed a resource to serve as a practical guide for our chapters and epilepsy advocates to support IGAP-related activities?

“IGAP Unpacked” offers our regions and chapters:

• a compact translation of what IGAP is and why it is important for our global community
• how IGAP can be successfully leveraged as a policy framework to make epilepsy a global public health priority
• concrete recommendations for IGAP-directed policy advocacy and implementation actions
• key facts and figures around epilepsy and links to important resources in the field

The guide is available in English, Spanish and French.

Where Are We After One Year of IGAP?

We were pleased to join our colleagues International League Against Epilepsy and the World Federation Of Neurology for a recent webinar celebrating one year since the Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders (IGAP) was unanimously approved by World Health Organization Member States.

At this event, IBE President Francesca Sofia spoke about what IGAP means for people with epilepsy and other neurological disorders.

The video replay is now available to watch.

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

Below you can read how IBE pushed for IGAP adoption in the 18 months leading up to its approval.

In November 2020, the 73^rd World Health Assembly (WHA) adopted resolution 73.10 – Global Actions on Epilepsy and Other Neurological Disorders, which requested the World Health Organization (WHO) Director-General to develop an intersectoral global action plan on epilepsy and other neurological disorders. The action plan should address the challenges and gaps in providing care and services for people with epilepsy through a comprehensive, coordinated responses across sectors.

In early April 2021, the IBE, ILAE, WFN and ICNA submitted a joint letter with detailed comments in response to the Discussion paper circulated by the WHO.

IBE sent a survey asking chapters from every region in the world to identify their priorities (view results). IBE consolidated these comments and sent an official response to the WHO Brain Health Unit.

In May 2021, a Summary of consolidated comments received by WHO in the first round of consultation was published on the WHO website.

On 16 July 2021, ILAE and IBE hosted a virtual roundtable discussion with over 160 participants from 50 countries including representatives from Ministries of Health, Education and Employment to Inspire a Decade of Action guided by the Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders.
Click here to read the roundtable report or watch the full recording here.

Over autumn/winter 2021, ILAE and IBE continued to collate and consolidate feedback from our community, which was used to inform the final draft of the IGAP We also created a position statement which was used in our outreach to member states.

Ultimately, the draft IGAP was adopted on January 27th 2022 at 150th session of the World Health Organization’s Executive Board. This was then presented to the World Health Assembly for final approval by all Member States in May 2022.

The full discussion on IGAP from the World Health Assembly can be accessed via this link – where you will also hear IBE deliver its statement. You can read our statement here or access our full position paper here.

Thank you to the following Executive Board members who were vocal in their support of the IGAP: Japan, Malaysia, Oman, Russian Federation, the Philippines and Tunisia. Other Member States who showed support were: Australia, Botswana, Brazil, Burkina Faso, China, Ghana, Grenada, Guinea-Bissau, India, Israel, Jamaica, Kenya (on behalf of all African member states), Madagascar, Rwanda, Thailand, the UAE, the UK and the USA.

Then, finally, in May 2022, IGAP was unanimously approved by the 75th World Health Assembly in Geneva, Switzerland. To mark its passing, IBE, the International Child Neurology Association (ICNA), the International League Against Epilepsy (ILAE) and the World Federation of Neurology (WFN) hosted a webinar on 28 May 2022 to discuss: What next?

You can watch the webinar at the link below and stay tuned for future updates as we move towards implementation!

Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders: What’s Next? 

Epilepsy is one of the most common, chronic, serious neurological diseases, affecting 50 million people of all ages, all genders and all ethnic groups around the world. Epilepsy is a treatable condition still the burden of epilepsy is often neglected in public health agendas. Up to 70% of people with epilepsy could become seizure free with appropriate diagnosis and use of cost-effective, and commonly available, antiseizure medicines.

Epilepsy: a public health imperative is a call for sustained and coordinated action to ensure that every person with epilepsy has access to the care and treatment they need, and the opportunity to live free from stigma and discrimination in all parts of the world. The report is the product of a long-standing collaboration between WHO and leading nongovernmental organizations working in the area of epilepsy, the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE).

Click here to access the report

Despite the very low cost of antiseizure medicines, more than 75% of people with epilepsy in Africa do not receive treatment. Left untreated, people with epilepsy face devastating social consequences, including stigma, discrimination and human rights violations.

Visit the IBE Africa website here to learn more about our work in the region.

In 1997, the IBE, ILAE and WHO established the Global Campaign Against Epilepsy (GCAE) using the tagline ‘Out of the Shadows’. The GCAE was launched in the WHO Headquarters, Geneva, Switzerland in June 1997 and in Dublin, Ireland of that same year during the 22nd International Epilepsy Congress. The campaign focused on epilepsy awareness, acceptance and education.

On May 5, 2015, 194 WHO member states endorsed an epilepsy resolution titled ‘Global Burden of Epilepsy and the Need for Coordinated Action at the Country Level to Address Its Health, Social and Public Knowledge Implications’. This historic resolution – WHA68.20 (link) consists of 4 sections:

1. Recognition of the global burden of epilepsy
2. Need for country-level actions such as urging member states to take specific actions in the areas of health policy, health care action plans, health care coverage, education and research, and public engagement
3. An invitation for multilateral engagement and
4. A call for the WHO Secretariat to improve health information and surveillance systems to get a clearer picture of the global burden of epilepsy and its economic impact, as well as to measure progress in improving access to care for people with epilepsy.

• Advocate’s Toolkit For Making Epilepsy A Priority in Africa
• Advocate’s Toolkit For Reducing Epilepsy Stigma in Africa
• Report on the 21 States