Section Editors Johan A. Aarli, MD Oded Abramsky, MD, PhD, FRCP Global Perspectives Mamta Bhushan Singh, MD, DM (Neurology) Correspondence to Dr. Singh: mbsneuro@gmail.com Supplemental data at Neurology.org EPILEPSY IN DEVELOPING COUNTRIES: PERSPECTIVES FROM INDIA India, with a population of 1.2 billion, has an esti- mated 12 million persons with epilepsy (PWE). As 70% of Indians are agrarian, more PWE live in vil- lages and small towns than in big cities. However, most doctors and hospitals providing epilepsy care are concentrated in a few large metropolitan cities. This sets the stage for many of the ills that plague epi- lepsy care in India. Untreated epilepsy. Reported estimates of treatment gap between the north and south of India and also between rural and urban populations vary (table e-1 on the Neurology ® Web site at Neurology.org.). For the most neglected regions, a treatment gap of up to 90% has been reported. While untreated epilepsy suggests failure of the health care system, it also constitutes low-lying fruit, where it would be cost- effective to seek out, diagnose, and initiate antiepileptic drug (AED) treatment in drug-naive patients. We know that if patients previously unexposed to AEDs are treated, at least half of them are expected to become seizure-free. In other words, the number needed to treat for such patients is 2. There are few other entities in neurology where outcome with treatment is expected to be so good. India is a young nation with more than two-thirds of the population below age 35 years. Improving treatment options and availability will empower PWE to not only improve their own lives but also participate in and contribute to society. Consequences of untreated epilepsy. Active epilepsy with frequent seizures is dangerous, depressing, and disabling. While medical consequences of seizures are recognized more easily, the social, economic, psy- chological, personal, and professional fallout often escape attention. If a child has epilepsy, there is a high probability of him or her dropping out of school. Young PWE are often discriminated against when seeking employment, forcing them to remain finan- cially dependent on family, friends, or society. Accep- tance and fulfilment in a marital relationship is frequently denied to a PWE, more so if the PWE is a woman. Stigmatization against PWE in society is widespread, deep-rooted, and pervasive. Seizures in untreated patients are often generalized and may lead to injuries and mutilation (figure). The severe disability associated with active epilepsy and frequent ongoing seizures is often forgotten or overlooked even by experts in the field. 1 What causes the treatment gap? Illiteracy, poor health awareness in general, and cultural acceptance of alter- native, mostly unscientific, systems of therapy have been advanced as reasons for the treatment gap. While these may have been correct in the past and may still be true to some extent today, most Indian villages have urbanized to varying extents and infor- mation technology has made inroads in many previ- ously insulated communities. In a survey of 200 rural PWE, all knew that epilepsy was a medical con- dition and 97% believed they would benefit from modern medicine. 2 Increasingly, the only reason that patients cite for not ever having taken treatment in spite of having had active epilepsy for decades is lack of access to a doctor. The poignancy of this bottle- neck is further exaggerated because of the willingness and ability of thousands of these untreated patients to buy and consume AEDs if only they could get a pre- scription. While patients often know that medicines can help them, lack of information about the details of treatment, especially that treatment generally has to be continued for years, leads to a secondary treat- ment gap where a PWE prematurely stops treatment and loses seizure control. Deficit in primary care. Why is it so difficult for pa- tients in most of rural and semiurban India to consult a doctor? On paper, there is a hierarchy of functional government-run facilities responsible for primary health care needs at various levels, including villages. On the ground, however, these services are inconsistent and patchy, and there is in effect no reliable, uniform primary health care system present throughout the country. There are regional disparities, nonuniformity of available resources between states, and varying degrees of participation from public and private sectors. The cost of health From the Department of Neurology, All India Institute of Medical Sciences, New Delhi, India. Go to Neurology.org for full disclosures. Funding information and disclosures deemed relevant by the author, if any, are provided at the end of the article. 1592 © 2015 American Academy of Neurology ª 2015 American Academy of Neurology. Unauthorized reproduction of this article is prohibited.