Editorial from Lancet Neurology

Volume 9, Issue 10, October 2010, Page 941.

Epilepsy is a devastating and sometimes fatal disorder, yet many people with epilepsy are still not receiving the care or support they deserve. 70% of people with epilepsy are likely to respond to drug treatment but, as highlighted in a report published on August 26, 2010, by the Global Campaign Against Epilepsy (GCAE), many of those in Europe are not given that chance. This appalling situation exemplifies a serious underlying problem—that many governments, communities, and health-care providers are not taking epilepsy seriously.

At least 6 million people in the WHO European region have epilepsy. The proportion of these patients who are missing out on treatment, the so-called treatment gap, is around 40% across the region and more than 90% in some areas. Differences in access to treatment between countries are perhaps not surprising, given that the WHO-defined European region stretches from western Europe to include the Russian Federation and several central Asian republics, and that national income, life expectancy, and health-care systems vary greatly. However, services also differ within countries, according to level of urbanisation and socioeconomic factors, and access to care is particularly poor among migrant groups.

Some people with epilepsy and their families do not seek medical attention because they are not aware of how serious epilepsy can be or of the potential benefits of treatment. Others do not seek help because they fear the diagnosis could harm their prospects with potential insurers, employers, or marriage partners. Legislation needs to be reviewed and revised, to remove and prevent discrimination, as with the recent standardisation of driving licence regulations across the European Union. Awareness campaigns are also urgently needed, to educate citizens that discrimination should not be tolerated and to ensure that people with seizures are not afraid to seek help or speak out about their experiences.

Most of those who do seek medical advice will initially be seen by primary health-care professionals, some of whom have relatively little experience of epilepsy. Early diagnosis can lead to earlier freedom from seizures and improved quality of life. This is especially important for children; for example, early treatment of epileptic encephalopathy can prevent the disorder from becoming intractable and limit the devastating effects on cognitive development. Efforts are being made to educate these front-line professionals about epilepsy: the GCAE, which is a collaboration between WHO, the International League Against Epilepsy (ILAE), and the International Bureau for Epilepsy, is running a pilot demonstration project in Georgia following the success of similar projects in rural China and Brazil, and training is being provided for physicians, nurses, and other professionals under the auspices of the ILAE. Such training must be extended, to ensure that all people with epilepsy receive appropriate treatment at the point of first contact, or after referral to specialist care where available. According to the most recent data, around 10% of countries in Europe have no epilepsy specialists and only about half have epilepsy surgery programmes; thus many patients with refractory epilepsy have no access to treatment that could greatly improve or even save their lives. More than 30% of countries have no neuropsychological or rehabilitation services for people with epilepsy, which is inadequate given the risk of behavioural problems, underachievement at school, underemployment, financial difficulties, depression, and suicide.

Although epilepsy can often be controlled, the available drugs are not cures, and more than a quarter of people have epilepsy that is refractory to medical therapy. Epilepsy research badly needs more funding, and research challenges highlighted in the GCAE report include better understanding of the role of genes, risk factors for sudden death in epilepsy, and how progression to chronic severe epilepsy might be avoided. Epidemiological and economic data are also sorely lacking: many of those in the report come from the 2005 Epilepsy Atlas and a survey completed a decade ago. Future reports must include newer data, but this is unlikely to be possible while epilepsy research funding remains largely neglected.

Cure and prevention of epilepsy are still distant goals, but in the meantime many people with epilepsy in Europe are needlessly struggling with poor health and prejudice. Epilepsy must be given a higher priority by governments, policymakers, health-care professionals, and communities, within all countries in the WHO European region, not just those of the European Union. The potential for good control of seizures in many patients should not be taken as a sign that epilepsy is not important. The 6 million people with epilepsy in the European region deserve better.

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