Indian Write- Ups

Epilepsy is a grave and hitherto-neglected health concern in India.

The prevalence rate stands at around 5/1,000 population (at this rate, present estimate of total epileptics in this country is about 5 million).

The maximum number of cases belong to generalized seizure which is different from western countries where partial seizure is the commonest variety. Generalized tonic-clonic seizure (GTCS) - primary or secondary may account for almost 70% of all seizure types.

The treatment gap, which is a measure of percent of patient population not receiving the treatment, is estimated to be up to 73.7 - 78% in India. India had only 700 neurologists (mostly urban-based) to a billion people as of 2002, compared to a 1:20,000 - 30,000 in the USA. But this should not become the reason for the undertreatment of epilepsy in India. General physicians must be enabled to undertake timely treatment and to ensure referral of non-responders. Societal prejudice against epilepsy precludes early presentation, diagnosis and therapy. Spreading awareness against the disease and against avoidable delay is of utmost importance to eliminate this gap. To this end, on the urban side, the various branches of the Indian Epilepsy Association issue their own booklets on epilepsy for physicians and the general public. Regular newsletters are also published. But these methods reach only a small segment of the hospital-going urban population. Larger segments of the population need to be reached, with a focus on rural areas. Radio and television should be utilized more, with the production of interesting and humorous plays or slides that can be flashed during prime time that send a message.

Alternate systems of medicine should be encouraged and scientific studies should be undertaken into their respective efficacies, given the faith of our people in these systems.

Out of the Shadows

The hidden suffering of more than 40 million people throughout the world, affected by epilepsy and having to live secret lives because of ill-informed public attitudes, was highlighted when the WHO jointly with 2 non-governmental organizations (NGOs) announced in June 1997 in Geneva, the start of "Out of the Shadows – A Global Campaign Against Epilepsy".

The 2 NGOs were the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE). The campaign was aimed at improving healthcare services, treatment and social acceptance of epilepsy, the world’s most common serious, yet treatable brain disorder.

It is medically possible for up to 70% of people with epilepsy to have their condition brought under successful control. However, mainly for social reasons, 3-quarters, or approximately 30 million, of those affected with the disorder do not receive any treatment at all, and these people are mostly in developing countries.

In1990, epilepsy accounted for nearly 1% of the world’s disease burden, and is comparable in this respect to breast cancer in women, or lung cancer in men.

Epilepsy Care in India

The past

In the early 1940s and 1950s, the only anti-epileptic drugs available in India were phenobarbital and phenytoin. These were often used together, as polytherapy. Most patients, because of lack of understanding, discontinued taking their medication after the first 30 tablets or so. This often resulted in treatment failure, which led patients to search elsewhere for a cure. This continues to happen even today. Patients who have a seizure recurrence are more likely to pursue another treatment option. At one time, patients in rural communities had on alternative but to try non-allopathic treatments, such as branding, fasting, tying amulets, visiting places of worship, or practicing Ayurvedic medicine. Patients would commonly assume the recurrences were retribution for past sins and stoically accept their fate. One basic reason for these attitudes was the almost total absence of proper teaching and training in practical epileptology in the medical schools. Neurology as a specialty started in India only in 1951; and epileptology has not yet received the emphasis, it deserves at under- and post-graduate levels of medical education¹.

Present Day Scenario

The emphasis on primary care ensures early diagnosis of epilepsy - before patients accumulate a lifetime total of 30 seizures². Primary care physicians and paramedical workers are also in a good position to provide treatment with regular follow up to monitor changes and track patients compliance. Such follow up is often lacking in major teaching institutions because of a failure to communicate or because of the long distances (up to 500 km) between patients’ home and the hospital. Those who need secondary or tertiary care can be referred by the primary care physician.

The urban poor, who constitute nearly 10% of the country’s population, have on choice but to go to the local family physician or hospital. As is the case in rural areas, primary care physicians should be educated about simple, practical epileptology.