Bringing epilepsy out of the shadowsBMJ 1997; 315 doi: http://dx.doi.org/10.1136/bmj.315.7099.2 (Published 05 July 1997) Cite this as: BMJ 1997;315:2
Wide treatment gap needs to be reduced
- Rajendra Kale, Neurologista
The history of epilepsy can be summarised as 4000 years of ignorance, superstition, and stigma followed by 100 years of knowledge, superstition, and stigma. Knowing that seizures result from sudden, excessive, abnormal electrical discharges of a set of neurones in the brain has done little to dispel misunderstanding about epilepsy in most of the world. More than three quarters of sufferers remain untreated despite the availability in phenobarbitone of a cheap antiepileptic drug. Epilepsy remains a hidden disease associated with discrimination in the work place, school, and home.
Epilepsy—a state of recurrent and usually unprovoked seizures—is a truly universal disorder. People of both sexes, all ages, and every race, country, and socioeconomic group are susceptible to it. Its annual incidence is about 50 per 100 000 in the developed world, twice that in the developing world, and in some parts up to 190 per 100 000.1 About 40 million people worldwide have epilepsy; 100 million will have it some time in their life; and many more suffer its consequences as relatives, friends, employers, and teachers. Epilepsy accounts for 1% of the world's burden of disease, the same as for breast cancer in women or lung cancer in men.2 Yet, with appropriate treatment, three quarters of people with epilepsy can be seizure free.3
As 85% of the world's people live in developing countries most people with epilepsy live in developing countries: the industrialised economies bear less than 7% of the burden as estimated by disability adjusted life years.4 About 80-98% of patients in the developing countries are untreated.5 6 The reasons for this treatment gap have not been well studied, but they include failure to understand that epilepsy is treatable, limited neurological and medical services, early discontinuation of treatment by patients, recourse to traditional healers, and the cost of treatment. Not all antiepileptic drugs are expensive, however: in India one year's supply of phenobarbitone costs less than £4, and the drug is distributed free in government hospitals. Thus, the cost of drugs is not the main reason for the treatment gap.
Discrimination against people with epilepsy and ignorance about the disorder is worldwide. Patients often suffer more from the attitudes of others than from seizures. A survey in Germany in 1996 showed that about 20% of people interviewed thought that epilepsy was a mental disorder; a similar number objected to their children marrying a person with epilepsy.7 Seventeen states in the United States prohibited people with epilepsy from marrying till 1956, and denying them access to public places like theatres and restaurants was legal until the 1970s. Discrimination in developing countries is more blatant and widespread. In India, where most marriages are arranged, a girl with epilepsy has little chance of getting married, and a recent survey from Turkey showed that 70% of people thought that epilepsy resulted from supernatural causes.6
Negative attitudes to epilepsy are also reflected in charitable donations. In Britain, for example, the Charities Aid Foundation in 1996 showed that £215m was raised for cancer, nearly £9m for leprosy (of which Britain has no new cases), and only £2m for epilepsy—despite there being 400 000 people with the disorder.
The need for a global effort against this universal disorder is compelling. The first such initiative, “Out of the shadows,” was launched last month by the International League Against Epilepsy, the International Bureau for Epilepsy, and the World Health Organisation. According to president of the league and initiator of the campaign, Professor Ted Reynolds, its mission is to improve the acceptance, treatment, and prevention of epilepsy worldwide.
Part of the campaign is an awareness programme to emphasise that epilepsy is a treatable brain disorder, but there are also practical programmes to help governments identify and meet the needs of people with epilepsy cost effectively. The campaign will seek to implement research findings and identify regional and national centres of excellence. Funds will be raised from national governments, the World Bank, and pharmaceutical and related industries. Indicators of progress will include the number of governments that participate and a reduction in the treatment gap.
People with epilepsy have experienced misunderstanding and neglect for at least 4000 years. This campaign, which will run for four years, will hopefully bring epilepsy out of the shadows for the next millennium.