In 2000, epilepsy accounted for 0.5% of the global burden of disease,²² and appreciation for epilepsy as a public health problem is growing as the full range of medical, psychological, social, and economic morbidities associated with the condition are being recognized and quantified.²⁰ Use of such measures as the disability-adjusted life year (DALY) to more fully capture the burden of nonfatal, chronic diseases has played an important role in placing epilepsy on the public health agenda in many regions. Of the approximately 50 million people with epilepsy, over 80% reside in developing countries, and less than 10% of these individuals are receiving treatment.³⁰ A very productive collaboration, The Global Campaign Against Epilepsy, has evolved between the World Health Organization (WHO), International Bureau for Epilepsy (IBE), and the International League Against Epilepsy (ILAE).¹⁴ This consortium’s work is aimed at reducing the treatment gap, decreasing the social and physical burden of epilepsy, educating health care personnel, dispelling stigma, and providing support for prevention of epilepsy. These efforts are laudable, but these international efforts rely on individual health care providers working in developing countries to seek and/or accept the role of advocate and push forward the agenda of improving the lives of people epilepsy within their own community, city, country, or region.

No “how to” manual is available to describe the process whereby one would begin to improve epilepsy care for a population. Epilepsy texts typically provide advice on individual case management and sometimes provide guidance on the resources and organization necessary to develop an Epilepsy Surgery Center. Undoubtedly, there are many ways in which a motivated neurologist could approach such a mission, and the most appropriate tactics will vary greatly depending on the physicians’ expertise, available time, the burden of disease he faces, the resources and organization of the existing health care system, the local beliefs surrounding epilepsy, and more. Nevertheless, it may prove useful for physicians who have the opportunity and inclination to provide epilepsy care in less developed regions to learn about experiences elsewhere.

The Chikankata Epilepsy Care Team (ECT), located in a rural region of Zambia’s Southern Province, has been providing care to a large population of people with epilepsy since 2000. The ECT came into existence after efforts to understand the burden of epilepsy in the region in 1994 eventually resulted in local support (both community- and hospital-based) for the development of such a team. The ECT has since played a significant role in country-wide programs aimed at decreasing epilepsy-associated stigma and narrowing the treatment gap. This chapter provides an overview of our perspective on how care providers “in the trenches” might undertake efforts locally to improve epilepsy care, and goes on to describe the potential to expand such work to a national level under the right circumstances. We will also discuss other “success stories” we’ve encountered or learned about in the literature.

Epilepsy care provision in less developed regions is negatively influenced by several factors (Table 1).

Barriers to care for people in less developed settings are complex, multifactorial, and depend on economic, social, and cultural factors usually considered outside the realm of medicine. Yet, failure to recognize and address these barriers in the organization of health services delivery as well as in the approach to individual patient care will doom any attempts one makes to provide care to such vulnerable populations.

Consider the role that local health beliefs may play in determining whether a person with epilepsy is ever brought to your attention for care. Given the often violent and entirely unpredictable nature of seizures, these events are frequently interpreted as the result of supernatural or spiritual forces. As such, even people who would seek care at a health center for a fever or cough may take their seizure-related problems to a traditional or evangelical healer. Health care providers, who may have little formal education and no training in epilepsy, may hold similar beliefs regarding seizures that occur outside of acute infections. Only educational programs aimed at first-line health care providers and case-finding endeavors in the community will overcome these problems.

Even if someone wishes to seek medical care for their seizure disorder, medical services may not be accessible. Health care centers offering even first-line anticonvulsants may be either prohibitively expensive or too geographically distant from the person’s home to be a feasible source of care. Primary health care centers, usually staffed with nonphysician care providers, are often supplied with only the most basic medications, so that even if the health care provider is able to diagnose the condition and knows what treatment is needed, the treatment may not be available. These barriers are only exacerbated by the continuing brain drain. Physicians from regions such as Africa are leaving developing regions in droves as a consequence of the poor working and social conditions in the home country and the wealthy, aging West’s need for a larger pool of health care providers. Finally, epilepsy-associated stigma further may decimate the social capital of the person suffering from epilepsy, making it even more difficult for them to garner the community support needed to seek care. For example, women with epilepsy in Zambia often lack the usual male protector, having been largely abandoned by their families. Therefore, these women are particularly vulnerable to sexual assault if they travel alone. So, although most Zambian women can safely seek medical care alone or accompanied only by their children, this is not true for women with epilepsy, who need an adult to travel with them. The barriers to care listed in Table 1 are certainly not exhaustive, and each setting undoubtedly offers unique barriers. These can only be appreciated if one develops a dialogue with experienced, empathetic health care providers,
community leaders, and most of all people with epilepsy who are actively struggling with the barriers.

Developing or expanding epilepsy care services requires careful planning and input from stakeholders in the health care system. As neurologists, we may simply assume this is a reasonable health care priority. However, this is not always a safe assumption. Recognize that any program must eventually be self-sustaining. And therefore, the program must have enough value to warrant eventual support within a system that is probably chronically underfunded and that encompasses many other competing health care needs. Eventually, any investment in epilepsy care entails a lost opportunity to invest in some other aspect of care. One must ask the key question: Is epilepsy a significant enough problem in this community, given the other health burdens present, to warrant long-term investment?

This is not a trivial question. But before taking the issue to key stakeholders, some objective data is required to assess the true burden of the disease in the population. The most obvious measure of the epilepsy burden in a population is the prevalence of epilepsy. Standard methods have been described that are ideal for epidemiologic purposes.¹⁹ But the burden of epilepsy cannot be captured in a simple prevalence number. One must consider a far broader range of epilepsy-related morbidity and mortality to appreciate and express the full burden of disease (Table 2).

Formal studies to quantify the burden of disease may offer some academic currency and open doors to extramural funding opportunities. But even simple, hospital-based studies may offer data and insights into the burden of disease in a region sufficient to guide decision-making regarding resource allocation. For example, if your hospital has a busy burn center, consider a study to determine the proportion of burn victims who were burned during a seizure. If the number is substantial, then resources presently allocated to the burn center might be partially directed to epilepsy care, with the goal of burn preventions. Improving epilepsy care has been associated with a decrease in severe burns in some regions.