“He says that anti-seizure medications can have serious side effects. That’s why they can’t be stocked in our community health centre,” reports Jeevan, after returning from meeting the medical officer in charge at a nearby community health centre.
“The block medical officer told me that anti-seizure drugs could be dangerous in the hands of MBBS doctors,” says Pooja, who works in another district. “Even though we showed her the WHO mhGAP guidelines about primary care management of epilepsy.” I scratch my head. Essential medicines. They are essential and are still not where they need to be, on the shelves of people with epilepsy, and in the pharmacies of India’s community health centres (CHCs) and primary health centres (PHCs). “We need to tell Padmi’s story,” says Jeevan.
Padmi’s village is nestled among sugarcane fields. Her mother died two years ago from breast cancer. “I was only 18 years old then. My father worked as an agricultural labourer for big landowners around us.” Raju had been having seizures for many years, sometimes twice a month, sometimes more. “But he really tried hard to treat his “mirgi.” He had been to the government primary health centre and then to see so many different local doctors. Nothing helped. In the last eighteen months he had been taking medicines from an ayurvedic hospital in Rishikesh. They didn’t really stop his seizures either.”
One crisp morning last December, Raju told Padmi that he was going to plant trees by the canal. This time no family member could accompany him. Padmi had to cut grass with a neighbour. Her younger brothers were at school. When she came home with her big bundle of grass there was a big crowd around the house. “My bua (father’s sister) ran over and told me my father had drowned. A neighbour working nearby saw him have a seizure and fall into the canal but by the time he dragged him out it was too late.”
I looked around her small house with its bare walls while Padmi wiped her eyes. “We never got medicines to help my father’s epilepsy. Now he’s dead. After his death I also took down all the pictures of gods that were on our walls. They could not protect the lives of my mother and father so why should I give them any attention?”
The treatment gap for epilepsy in India is 60 – 80% and even higher in rural areas (1, 2). Treatment for epilepsy is rarely provided in government primary health centres or community health centres in North India and yet there are models of effective epilepsy care in rural districts in India that reduce the treatment gap and increase survival. (3, 4)
Padmi’s story of a poor family seeking but failing to find treatment for a common and potentially lethal illness is far too common. Will those in charge lift their heads from their paperwork and see people desperate to access effective care? Will a government capable of sending space missions to Mars, provide anti-seizure medicines and trained primary care doctors to its own citizens with epilepsy? Or should India’s poor just keep waiting for their god’s to save them?
Padmi has given consent for this blog to be published.
Kaaren Mathias is the programme manager for mental health, Emmanuel Hospital Association, India. This blog represents a personal view.
Competing interests: None declared.
1. World Health Organisation. Mental health atlas 2011. Geneva: WHO, 2011.
2. Tripathi M, Jain DC, Devi MG, et al. Need for a national epilepsy control program. Ann Indian Acad
3. Gourie-Devi M, Satishchandra P, Gururaj G. Epilepsy control program in India: a district model.
Epilepsia 2003;44 Suppl 1:58-62.
4. Nizamie SH, Akthar S, Banerjee I, et al. Health care delivery model in epilepsy to reduce treatment
gap: World Health Organization study from a rural tribal population of India. Epilepsy Res