Blog Author: Action Amos – Vice President of International Bureau of Epilepsy

When Cyclone Idai struck Mozambique, 27-year-old Augusto, who was living with his elderly parents, was forced to flee. For three months after the incident, he was left without access to medical care or his epilepsy medication. His situation is typical of numerous low-income nations, not just Mozambique. This could perhaps occur in a region where there are already problems with medicine access. It is a dual tragedy that is frequently disregarded. The alarming climate-related disasters of recent years have demonstrated the urgency of taking immediate action to combat environmental damage and protect the populace from its devastating impacts.

Floods and droughts are occurring increasingly frequently in parts of Africa, with recent ones hitting Madagascar, Mozambique, and Malawi. Forcible migration, split communities, homelessness, famines, health issues, social isolation, and poverty are just a few of the immediate effects. Although populations (especially marginalized groups) around the world are affected, the issue is worse in low-income countries, which are the least to blame for climate change.

People with epilepsy are one such marginalized group, and I shall talk about them here because of my lived experience. For instance, in Malawi, the “Vulnerable group” is an indicator displayed on the datasheet for assistance, and epilepsy is typically never taken into account when counting such vulnerable groups. Most often, people with epilepsy are ignored. The cause of this exclusion emanates from a lack of participation in pre-disaster consultations.   This results in exclusion from any potential relief assistance. Additionally, having epilepsy adds to the cost of life because one must seek out assistance, which is nearly impossible during or after a disaster.

Epilepsy is often taken care of under Mental Health legislation in the majority of African countries and under Disability Laws in a few other countries must thus do not get urgent and inclusive attention due to competing demands from other groups under these categories. Climate Laws are so silent when it comes to the inclusion of vulnerable groups by subgroups. This calls for a demand that vulnerable populations must not be grouped in disaster response frameworks and humanitarian action programs; rather, there must be subcategories by their “names”.

Persons with epilepsy must participate in discussions on mitigating and adapting to climate change through their representative organizations. Articles 11 and 12 of the UN Convention on the Rights of Persons with Disabilities particularly call for inclusion in decision-making and that this is a right that should not be violated.

Interestingly, the International Bureau of Epilepsy will be conducting a Need Survey, and notably one of the topics covered by this survey will be climate change and its impacts. A Commission on Climate Change has also been established by the International League Against Epilepsy which is a welcome development to see the medical fraternity considering this. As the effects of climate change worsen, the time to get involved is now !!!!!

We’ll take you to Kenya next week for a High-Level Engagement organized by the Kenya Association on the Welfare of Persons with Epilepsy (KAWE) and the International Bureau of Epilepsy, which has been made possible by the BAND Foundation and Whitten Newman Foundation.