International League Against Epilepsy
Your Excellences, Honorable Ministers, Ambassadors, Delegates
On behalf of the ILAE, representing professionals engaged in epilepsy care and research in more than 100 countries in all 6 WHO regions, we thank Director-General and the 144 WWO EB for addressing the access to medications.
Epilepsy accounts for a significant proportion of the world’s disease burden, affecting over 50 million people worldwide. However, epilepsy is treatable: up to 70% of people with epilepsy (PWE) could become seizure free with appropriate use of anti-seizure medicines.
PWE require this treatment for many years, often for a lifetime, and the abrupt withdrawal of medicines can have life-threatening consequences, including status epilepticus. It is essential to ensure that access to anti-seizure medicines is sustained over time to ensure uninterrupted treatment. The need “to improve accessibility to and promote affordability of safe, effective and quality-assured antiepileptic medicines“ was stated in the WHA Resolution 68.20.
Still an aaccess to effective anti-seizure treatment remains out of reach for the majority of PWE, particularly in low and middle income countries, where up to 80% of people with epilepsy lives. Estimates of the treatment gap there is close to 90%, higher in rural versus urban areas. This is unacceptable, as the acquisition cost of epilepsy medicines can be as low as US$ 5 per one year of treatment per patient.
Understanding of financial, educational, sociocultural barriers to accessing antiseizure medicines is crucial. Numerous actions should be undertaken at the international, national, district, and community levels to improve all key components of the access: rational selection, availability, affordability and appropriate use.
The ILAE is respectfully requesting the Director-General and the Executive Board for the development on the Global Action plan on epilepsy; the access to antiseizure medications should be one its priorities.