IGAP report 2022-2031

Published: October 12 2022
Last updated: May 12 2023

The intersectoral global action plan on epilepsy and other neurological disorders 2022 – 2031 (IGAP)

On 27 May, the 75th World Health Assembly approved the Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders 2022 – 2031 (IGAP). By doing so, the World Health Organisation (WHO) is pushing its member states to prioritise brain health over the next decade: each country must therefore be committed to improve access to care and treatments for neurological conditions, as well as prevent new cases and promote the importance of brain health.

The plan was voted for by all 193 member states of the Assembly, including the UK, and aims to reduce the impact of epilepsy and other neurological conditions on people, improving their quality of life.

Each country is urged to meet five strategic objectives by 2031:

  • raise policy prioritization and strengthen governance
  • provide effective, timely and responsive diagnosis, treatment, and care
  • implement strategies for promotion and prevention
  • foster research and innovation and strengthen information systems
  • strengthen the public health approach to epilepsy

The IGAP was built on a vision of a future world in which brain health is valued, promoted and protected throughout all stages of life, and people living with neurological conditions reach the highest possible level of health, with equal rights, opportunities, respect and autonomy.

On a global scale, people with neurological conditions are experiencing a significant level of discrimination and human rights violations. In the United Kingdom, only 42% of working age people with epilepsy are employed: this is among the lowest rates of employment in the country. Research by the Trade Union Congress (TUC) also underlines that people with epilepsy are paid, on average, 11.8% less than non-disabled workers. If the pay gap and the low rate of employment are not worrying enough, people with epilepsy also struggle to have a stable work life as a result of their condition: indeed, in a recent Neurological Alliance survey, 47% of people with epilepsy said that they were forced to leave employment at some point in their life. This reflects a level of discrimination much higher compared to people with other neurological conditions.

The WHO, through the implementation of the IGAP, wants to erase the systematic barriers faced by people living with epilepsy, reducing the stigma, impact, and burden of neurological conditions.

Thanks to the six guiding principles set out in the plan, the Organisation is also encouraging countries to adopt Primary Health Care and Universal Health Care that are people-centred: this means that people with neurological conditions such as epilepsy should have access to care and treatment without any discrimination or risk of financial hardship. This includes guaranteeing essential, effective and affordable medications and other health products. Moreover, the IGAP is calling for scientific evidence and best practices in order to develop public health policies that are cost-effective, sustainable and affordable.

In the UK, the debate regarding medical cannabis and epilepsy is broad and needs scientific attention. Right now, the National Institute for Health and Care Excellence (NICE) recommends the use of Epidyolex, a purified cannabidiol (CBD) oral solution, to people suffering from two severe epilepsies: Dravet syndrome and Lennox-Gastaut syndrome. The inclusion of this cannabidiol in the NICE guidelines came after some research involving children with these rare and serious epilepsy syndromes who hadn’t seen effective results from other types of medication.

As the IGAP is pushing towards scientific evidence and new research, the UK is now urged to invest in the research to make sure more people with epilepsy can safely access medical cannabis and CBD-based medicines.

The WHO recognises the economic cost the IGAP will have on countries. The best way to finance this plan is to do it efficiently: creating a stable, properly funded program to access care and treatment will not only reduce the financial impact of out-of-pocket health and social care cost for people with neurological conditions; it will also reduce long-term costs for governments. Such programs will have to be created as a joint collaboration across relevant ministries, to better manage the strategic objectives before 2031. In the UK, this means that the various Secretaries of State will have to effectively work together to implement and guarantee fairer and more adequate support for people with disabilities.

The requests from the WHO are that, by 2031, countries will have increased service coverage for epilepsy by 50% compared to 2021. Moreover, by the same year, 80% of countries will have developed or updated their legislation in order to promote and protect human rights for people with epilepsy and other neurological conditions.

The IGAP marks a big step towards the recognition of epilepsy and its wider implications. By setting out guidelines and objectives for countries to follow, the WHO is urging a drastic shift in how we perceive and look after people with epilepsy.

Epilepsy Action is pushing the UK Government to work on an effective program based on the IGAP that can help people with epilepsy and other neurological conditions to live a dignified life.