From the Information Officer

Improving Epilepsy Care

One of the primary goals of the ILAE is improving care of patients with epilepsy around the world. What improved care actually means and how it will be accomplished will depend on where in the world we are talking about, as the needs vary considerably. It is clear, however, that in much of the world even the most basic resources are limited or entirely missing. This lack of resources has arisen for many reasons. At one level epilepsy is not considered a pressing problem in relation to other medical issues within the medical community, or epilepsy carries such a social stigma that those who suffer from the disorder and their families do everything possible to deny the existence of the seizures. One can’t treat a disorder that, in the minds of many, doesn’t exist or doesn’t matter. As Nico Moshé points out in his note in this issue, part of the problem may arise because we have been creating a positive picture of epilepsy so that this terrible stigma can be removed. In doing so we may have lessened the urgency of uncontrolled seizures, which has, as a consequence, reduced the resources that are available to care for patients with this often devastating condition.

The problem of adequate care is further exacerbated by the lack of effective therapies in many parts of the world. This absence of treatments comes from a number of sources, not the least of which is socioeconomic: many countries and their citizens are unable to pay for the simplest treatments or to sustain those treatments over the many years that someone may live with epilepsy. Another reason behind the inadequate treatment is that there are no professionals (physicians or nurses) who have appropriate training or background in epilepsy. As a result the basic diagnostic and treatment infrastructure doesn’t exist, or the majority of patients with epilepsy don’t have access to it. Yet our goal is to overcome these obstacles to ensure that everyone who needs epilepsy treatment gets it. Looking at the problem from a distance, it seems almost insurmountable. In this issue of Epigraph as well as in several past issues, we have presented several different approaches that have been successful or show great promise for improving access.

The issue of developing the expertise in a sustainable manner is addressed by Marco Medina, 3rd Vice President of the ILAE and Dean of Medicine at the National Autonomous University in Honduras. In his article he describes the problem of a limited number of neurologists in Honduras and how the problem was solved in a way that ensures long-term access to specialty care from specialists who have the expertise to address the issues that are specific to the country. Another means for improving care is providing support to colleagues in countries in which there may be only a handful of professionals who have a significant interest in epilepsy. In such situations it is easy for the specialist to feel isolated and to become discouraged. In his article, Lionel Carmant, of the North American Commission, describes the efforts on the Caribbean island of Hispaniola, including the Dominican Republic and Haiti, to establish and maintain specialized clinics. The situations in the two countries are very different, but the effort is the result of local interest that is encouraged by individuals and organizations. In the cases of Honduras and Hispaniola, the success was driven by the local recognition that there was a problem. The problem was solved in a locally appropriate manner, with some encouragement and suggestions from outside advisory groups. This approach may be a useful model for other countries to follow (and we have written about such successful local-distant partnerships in previous issues). The local initiative is the key to long-term sustainability of the enterprise.

In many countries, however, that kernel of enthusiasm doesn’t exist or professionals with interest in epilepsy don’t know where to turn. The ILAE and its Regional Commissions have been working to overcome this barrier. A recent example is described in the article by past ILAE President, Giuliano Avanzini, in which he describes a recent workshop in Ghana that was co-sponsored by the ILAE and the International Brain Research Organization (IBRO). The course was designed to introduce many key concepts regarding clinical epilepsy and the basic science underlying the disorder. Courses like this one and many others that have been developed by the educational arms of the Asian, Latin American and European Regions are often the critical first steps in developing better epilepsy care. Although courses such as these are in and of themselves not really sufficient for developing local expertise, the courses are often critical for showing that there are better treatments and that scientific research is helping to make real progress. These programs also help to identify and encourage local professionals to develop further skills in epilepsy. These courses also allow young healthcare workers to make outside connections that may serve as resources. The courses can also identify promising and committed young talent that might benefit from further training.

In many ways these articles provide an outline of how the League might help to develop programs of improved epilepsy care in countries that at the moment don’t have local epilepsy expertise. The actual approach could vary depending on the specific conditions in a country, but the key aspects would include creating enthusiasm for the field and identifying interested individuals. The next step could involve more intensive training or interaction with mentors as has happened in a number of regions. The ultimate success though will come through the initiative of the local medical community. Although partnering with established programs is extremely important, as Marco Medina indicated, what ensures success is the local desire to be successful as well as conditions that are supportive of the goals. As we look to our goal of improving epilepsy care, we should keep these factors in mind.

Edward H Bertram
Information Officer