STOP-Epilepsy is a Department of Biotechnology-Wellcome Trust India Alliance supported clinical and public health research initiative to improve epilepsy care across three Indian districts: Gauriganj in Uttar Pradesh, Bhimavaram in Andhra Pradesh and Nawanshahr in Punjab state. We report our formative experience during a team visit to Bhimavaram to
assess the baseline level of care provided to people with epilepsy through the primary health care system. This assumes importance in view of the most recent adoption of the Intersectoral Global Action Plan (IGAP) for Epilepsy and Neurological Disorders by the World Health Assembly.
Bhimavaram is a newly carved district in coastal Andhra Pradesh in South India (Fig. 1A). According to the latest census, the district has a population of 2,10,000. People are mostly occupied by paddy cultivation or fish farming (Fig. 1B).
Our team visited two primary health care centers (PHCs) in the district. Reaching the PHCs took a few hours largely because navigating the pot-holed road was quite a challenge. At the two primary care centers, Turputallu and Gollavantippa, we interacted with the medical officers, pharmacist, auxiliary nurse mid-wifes and the Accredited Social Health Activists (ASHAs) (the community health workers, each of whom covered approximately 1000 population in the community). The PHCs each provided primary care service to approximately 50,000 populations.
We asked the medical officers how commonly they saw people with epilepsy during clinics. At Turptallu (Fig. 2), the doctor replied, “Not too many. I would see about 60-70 out-patients on any day and might see 1-2 people with epilepsy in a week”. At Gollavantippa PHC, the pharmacist informed us that the Tab. Phenytoin, 100 mg and Inj. Diazepam was available with the PHC pharmacy. “What about other epilepsy medicines?”, we asked. To which he replied, “Other epilepsy medicines are never prescribed and so, we never requisition other epilepsy medicines”. Clearly, there were few people with epilepsy if at all in the clinics and this the main reason cited for the lack of availability of epilepsy medicines.
At Turputallu, we sat with the ASHAs for nearly one hour and first asked with the help of a translator, if there were any people with epilepsy in the communities that they lived in and catered to. There was a long silence after which one of the ASHA workers said that she was aware of one such case in her village. We asked them about possible problems that people with epilepsy could face. One of them replied, “They are usually fine but during no-moon days, they can have problems”. Clearly, epilepsy remains moonstruck in this community.
At Gollavanitippa, the ASHAs were likewise asked if there were people with epilepsy in their communities (Fig. 3). At first, they all shook their heads as if to convey that there were none. As the interpreter persisted to question them, one said that she knew one family in her village, of which, a brother and sister both had epilepsy. The sister died prematurely and the brother is seeking treatment for epilepsy from a private facility. She also mentioned about one woman who was on treatment and married off some time ago. It seems that that the epilepsy was not declared during the marital negotiations and there has been considerable discord between the natal and conjugal family on this account. Then another ASHA was able to recall another person who was differently able and had epilepsy. She thought he was visiting a private practitioner but was taking his medicines irregularly on account of financial constraints. All ASHAs agreed that hiding epilepsy was fairly common among both genders and this was done primarily by families to avoid ruining marital prospects. Mercifully, however, recourse to indigenous medications or witchcraft was not common in the District. People would like to visit a specialist, funds permitting.
The World Health Organization encourages engagement of primary health care doctors and other workers in epilepsy care in regions where specialists are few and far apart. The actual state of affairs is that very few people with epilepsy visit primary health care centers. The community health workers are aware of a diminutive fraction of people with epilepsy in their communities (Fig. 4A). Where then do people with epilepsy seek care from? There could perhaps be alternative pathways of care, clearly not alternative medicines or sorcery in the case of Bhimavaram. Or do people with epilepsy remain under shadows? Despite the number of epilepsy medicines on WHO Model and National lists of essential medicines, the availability does not percolate to primary health care dispensaries (Fig. 4B). Not in the least, if care providers in primary care scarcely see people with epilepsy in their clinics, would they be able to assemble experience to manage epilepsy effectively? These are questions and issues that need to be carefully considered as we prepare to meet the ambitious goals of IGAP.