Epilepsy, as discussed in article I penned for this newspaper in the recent past, is a medical condition requiring greater awareness and acceptance. My article described the hardships that persons with epilepsy (PWE) experience on a daily basis, and how the general public can play a role in improving such situations. From public stigmatization to the lack of access to proper treatment, it is agreed that more should be done for PWE. As such, an ongoing Global Campaign Against Epilepsy “Out of The Shadows”, a joint initiative by the International League against Epilepsy (ILAE), the International Bureau for Epilepsy (IBE) and the World Health Organization (WHO), has strived to improve the acceptability, treatment, services and prevention of epilepsy worldwide.

In Malta, approximately 4,000 citizens have epilepsy. This is a significant number of individuals that require some form of assistance, whether medically or communally. In Malta, efforts to achieve these objectives started in the mid-90s though the Caritas Malta Epilepsy Association (CMEA). It is admirable to see how far CMEA has come from its humble beginning in 1996. Founded by a group of volunteers, passionate in their quest to better the lives of PWE, it has become home to circa 300 members. CMEA has been involved not only locally but also internationally in ensuring that the issue of epilepsy is addressed. As a full member of the IBE inducted in May 2001, it is admirable that CMEA plays a significant role to improve the situation particularly in the area of raising awareness and increasing accessibility to treatment for PWE.

CMEA, as the Maltese member organisation of the IBE, has worked closely with its parent organisation in promoting education and local awareness about epilepsy in Malta. CMEA work includes talks on television and radio, lectures at schools and parishes, in-service courses for educators, and seminars for police recruits, among others. CMEA also collaborates with the Department of Clinical Pharmacology and Therapeutics at the University of Malta, and the Epilepsy Society of Malta, which is the Maltese Chapter of the International League Against Epilepsy. This work carried out by CMEA is most commendable, and should inspire others to follow suit and join the cause in their own individual capacity.

At the recently concluded 13th Epilepsy and Society European Conference held in Slovenia between the 28th and 30th August 2013, organizing committee member Victoria Dimech, who is also CMEA’s Secretary, ensured the conference was used as a platform for the exchange of information. This would be beneficial to the people she and CMEA serve in Malta. Dimech also co-chaired a session entitled “Switching Brands: what are the issues?” to share her opinion on the important aspect of the use of originator vs generic medicines in epilepsy with the rest of the conference. CMEA advisor Prof, Janet Mifsud, who conducted a session on the current state of epilepsy care in Europe post the European Declaration, also joined her. This conference was successful in engaging not only PWE and their families but also nurses, psychologists, neuropsychologists and epilepsy carers.

Epilepsy can have significant social and economic implications. Although progress has been made in recent years, more needs to be done to further improve the existing conditions faced by PWE. Being the Vice President of the Epilepsy Advocates Intergroup at the European Parliament, I feel that the Maltese are most fortunate to have an organization such as CMEA.

One of the European Parliament’s latest efforts is its Written Declaration on epilepsy. Furthermore, a draft amendment to source funding for the “European Study on the Burden & Care of Epilepsy” has also been submitted for Budget 2014.  It can be viewed as a step forward in addressing the issue on a larger scale, creating a wider platform for future discussion.

As the shift moves towards collaboration with various agencies to achieve our common goal, I applaud the groundwork carried out by CMEA, which continues to inspire my work on the issue of epilepsy.