In my final round of Epilepsy Awareness visits for schools and community groups, I had become familiar with the question “Je kifafa ina tiba?” (Is Epilepsy curable?). The question would come immediately I was introduced to speak. A clear impression of a people who already know what epilepsy is, their concern is just whether the condition is curable. The knowledge and experience of epilepsy is profoundly culturally mediated and the meanings attributed to the condition can have a great impact on its social course.
Epilepsy is the most common serious neurological disorder and is one of the world’s most prevalent non-communicable diseases. It is estimated that the condition affects approximately 50 million people, around 40 million of them living in developing countries. In transitional and developing countries, non-communicable diseases account for a high proportion of the total mortality and disease burden. Professor Kioi, the former chairman of National Epilepsy Coordination Committee (NECC), said: "Epilepsy needs to be brought into the agenda of non-communicable diseases.”
NECC Assistant Chairman Dr. Eddie Chengo ascertains that; Epilepsy is a common disorder, particularly in poor areas of the world, but deriving accurate figures on the epidemiology of epilepsy in low- and lower-middle income countries is very difficult. There have been very few surveys to gather appropriate data and such studies tend to be expensive, especially for countries whose health research funding is likely to be very limited.
Professor Newton and Professor Hector Garcia, both welcome Trust Senior Research Fellows, conducted a comprehensive review of academic articles about epilepsy in developing countries in order to piece together a picture of the burden of the disease in poorer parts of the world.
The study revealed the enormity of the treatment gap in poorer nations, with over 60% of people living with epilepsy in low- and lower-middle-income countries not accessing appropriate care. This is partly due to poor adherence to prescribed treatment but there remain huge barriers to accessing care, particularly in rural areas. The stigma associated with the disorder and cultural beliefs around causation is identified as a major problem, along with distance from a health-care facility and inadequate skilled manpower.
The epilepsy burden could be easily reduced by addressing some of the risk factors. “Sadly, adequate facilities for diagnosis, treatment and on-going management of epilepsy are virtually non-existent in many of the world's poorest regions. Many people with epilepsy or their families do not even know that they have a disorder that can be controlled with biomedical treatment, so it is vitally important that awareness is raised and medical care improved in these regions," added Professor Newton.
Various studies in developing countries have shown that many constraints and difficulties hinder the adequate treatment of epilepsy. These factors, outlined below, are not restricted to one particular social sector but exist in the economic, political, and cultural frameworks of societies.
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Different perceptions and understanding
Cultural beliefs vary from country to country and may influence individuals’ health-seeking strategies. For example, people may not seek treatment with antiepileptic drugs if epilepsy is not seen as a condition that can be treated by western medicine. This is equally true of people in both industrialized and developing countries. In both settings a lack of knowledge about the cause and treatment of epilepsy, possibly dependent on levels of education, may lead to a degree of stigmatization of people with epilepsy. Differences in perception, lack of knowledge, and illiteracy can also lead directly to problems of compliance with medication regimens.
Lack of prioritization
Despite its importance and the existence of an often-effective remedy, epilepsy is not generally recognized as a public health priority. Where there are low budgets for health, resources are inevitably prioritized for conditions perceived to be more important than epilepsy, such as infectious diseases. Data showing the cost-effectiveness of treating epilepsy rather than other health problems would be invaluable in convincing health planners of the need to prioritize epilepsy treatment. Unfortunately, there has been few studies on this issue: urgent research on the subject is therefore required.
Supply of antiepileptic drugs
Ideally, the choice of antiepileptic drug for each patient should be based on seizure type and/or syndrome as well as the individual person’s needs. Unfortunately, in most developing countries both the choice and supply of drugs are limited. As the population sizes and the prices of antiepileptic drugs in these regions are similar, it is clear that relatively small quantities of these drugs are available. Furthermore, in inadequate and poorly-resourced health care systems, whether under structural adjustment or not, any type of antiepileptic drug is usually in short supply. In such systems the normal determinants for drug treatment are the drugs cost and availability.
The profitability of antiepileptic drugs for pharmaceutical companies and distributors can be an additional factor in their supply and use. The profit margin on a drug such as phenobarbitone may be too small to make it commercially viable for the companies producing it or for pharmacies. Although the profit may be too low for producers, paradoxically the price may be too high for consumers. In view of such problems concerning the supply of antiepileptic drugs, it has been argued that the non-availability of antiepileptic drugs is the most important obstacle to the care of people with epilepsy.
Bridging the gap
Community-based approach. A study done on engagement of Community health volunteers facilitated by Foundation for People with Epilepsy (FPE) organization in 2015, attributed the reduction of seizures in more than 80% of the participants. Community health volunteers identified people with epilepsy. Predefined protocol and simple epilepsy diagnostics tools, suitable for use by non-physicians enabled the health volunteers to take a leading role in identifying possible epileptic seizures, education, adjustment of drug doses, monitoring treatment, and ensuring compliance.
This study model established an important precedent for treatment projects led by community health volunteers. It emphasized the feasibility of delivering appropriate care in developing countries through the primary health care system.
Sustainability. Although the study model efficiently treated people with epilepsy and provided methods which could be adopted elsewhere, an additional constraint has jeopardized their achievements in the longer term. The programs came to a halt after the people who had established them moved away.
The sustainability of a program depends on community participation and therefore needs to be societal as well as integrated into primary health care. Community and family members who take care of people with Epilepsy, testify on the important role such medical sustainability programs have impacted positive change on their loved ones.
Mama Dennis, a resident in Malindi-Kilifi County, who looks after his first born son living with Epilepsy, attributes the reduction of seizures and wellbeing of his son to the sustainable medical program as having been initiated by Cheshire Disability Services Kenya. "Dennis improvement has constantly been contributed by adherence to medication", says the mother of three whom by the time of our visit, she was busy at the shamba looking after her cattle while Dennis was relaxing at home. Hers is just one of the many success stories affiliated with Cheshire's medical support program for people with Epilepsy in the larger Coastal region.
Issues of sustainability are not only essential to an intervention's success but also have important ethical aspects. Antiepileptic drugs provided in the cases above if not sustained it is unclear what happens to the people with epilepsy after such a program is completed. If drugs were provided free of charge, did this continue? If not, had patients been warned that they would have to pay for their treatment? Did drug costs rise after treatment? Were patients able to access a similar level of care after the program was completed? Moreover, if drug supplies cease after the perceived life-cycle of an intervention, patients who have been treated may face an increased risk of status epilepticus. This means that what begins as a program or intervention model may end up increasing mortality.
The treatment gap can only be properly closed if poverty and inequalities of income are dealt with at the local, national, and global levels. At the local level this may mean ensuring that primary health care operates within a community development framework where, for example, there are literacy and income-generating programs.
These approaches may also prove to be of value in the treatment of other non-communicable diseases. However, in contrast to other chronic non-communicable diseases, such as diabetes and heart disease, there is a high social burden and stigma attached to epilepsy. These psychosocial issues would not, therefore, have to be included in programs for other diseases.
Although mortality among people with epilepsy is high, the chances of remission are also high and therefore the probability such people being young, fully contributing members of society is higher than with heart disease, where the afflicted population is more often elderly and non-contributing. Unfortunately, it is difficult to provide more concrete proposals at present. However, after the Global Campaign Against Epilepsy has been operating for some years its relevance to other non-communicable diseases should be re-examined, to discover what lessons have been learnt and which approaches may be appropriate.